Today I want to talk about something we all need to know, How to Recover After Being Glutened.
Disclaimer: Please understand that I, and others whose advice is cited here, have no expertise when it comes to your personal medical issues. Some who are quoted here do serve as medical professionals, but they have no knowledge of your specific medical needs and situation. Most of us whose inputs are shared here are not medical professionals. In this post, all of us can be viewed as volunteers sharing our experiences. Please consult your physician for medical guidance as needed.
glu·ten – noun: a tenacious elastic protein substance especially of wheat flour that gives cohesiveness to dough; verb: to make ill through gluten (past tense/passive, glu·ten·ed, e.g., “I’ve been glutened.”); glu·ten·ous – adjective: contains gluten.
Synonyms: evil, poison, torture, pain, misery, ____ (“fill in the blank” with your synonym).
Okay, I took some liberties with my dictionary entry above. The truth is that you won’t find the word “gluten” shown as a “verb” in the dictionary. You also won’t find “glutened” or perhaps “glutening” (as in “That was a really, really bad glutening!”).
Of course, you won’t find all the negative synonyms for gluten in the dictionary either, but for those of us on a gluten-free diet, all of these words/descriptions ring true. It’s like a visit to the “house of horrors” when we get “glutened.”
And whether “gluten” is in the dictionary as a verb or not, believe me, it’s an action word, which is the classic definition of a verb. In this case, the action that is being “done” to us by gluten is very real and sometimes hard to recover from.
I often get desperate emails, tweets, Facebook messages and phone calls from readers and support group members who took their first major gluten “hit” (yep, more slang, but equally accurate terminology) about what happens when one ingests gluten after going gluten free and beginning to thrive.
Sometimes they feel like they have the flu. Sometimes they feel like a “train wreck.” Sometimes they feel like their body that was starting to respond positively to the gluten-free diet is once again devastated … “condemned” … in ruins, if you will.
These individuals who contact me are looking for tips and solutions on how to feel better as quickly as possible.
They have families to take care of.
They need to be productive employees.
They need to feel human and be able to eat dinner with their loved ones.
They want to feel up to walking the dog.
They don’t want to lash out at their loved ones because gluten has taken control over their emotions.
They want to greet their partners with a smile and a kiss.
They want to bounce their toddlers on their knee or roll around on the floor playing with the little guys.
In short, they just want to function normally again.
I get what they are going through because I’ve been there more times than I’d like to recall (three times within a five-day period recently). I usually reply to the pleas for help immediately by firing off every answer that comes to mind in that moment—all solutions intended to detox/and or calm the bodily systems impacted by gluten exposure (brain, gut, skin, etc.—all of them).
While the only up side of being “glutened” is to remind one of how great it feels to live gluten free, it’s often a reminder opportunity that we’d gladly pass on. To make matters worse, one common response to being glutened is not being able to think clearly, a symptom most often referred to as “brain fog”.
Then there are the other common mental/emotional responses to being glutened, like anger, moodiness, depression, and anxiety. None of these conditions facilitate being able to research what to do to feel better … and feel better fast.
Tips on How To Recover After Being Glutened from Members of Gluten-Free Community
Today’s post shares my own best remedies for being glutened and input from many other members of the gluten-free community. I think you’ll find the guidance here really helpful. I learned a lot of new strategies that I plan to implement myself when the next time comes, because unfortunately unless one lives in a bubble, there will be a next time.
Me … Shirley (gfe—gluten free easily) ~ “My reactions vary greatly according to how much gluten I’ve been exposed to, but I tend to follow basically the same path to healing each time. First, I go for the activities that tend to help me get the gluten toxins out. I take hot steamy showers (saunas work well, too). I do Epsom salt baths. (FYI: My doctor and acupressurist have told me not to do them more than twice a week, several days apart. The reason? Good stuff is taken out of the body with the bad, and one must replenish that good stuff before pulling out more bad.) I sometimes get massages. I’ve gotten acupressure and acupuncture in the past, too. If I’m up to it, I do walk some as aerobic acitivity removes toxins. Yoga is often more my speed when I’ve been glutened though. I’m not talking about “stand on your head” (inversion) yoga moves. I’m just talking about simple movements that push those toxins out. I’m a big fan of the basic yoga videos (e.g., Rodney Yee AM/PM Yoga).
I tend to eat very little initially after I’ve been glutened. I sip on hot tea and chicken broth (made from bouillon) or actual stock and bone broth from my freezer. I sleep. I seek quiet time. I increase my daily probiotic and fish oil intake and I take digestive enzymes, including ones like Glutenease or Gluten Defense designed to help one digest gluten more readily. I’ve read that the “p” fruits/juices (e.g., pineapple, papaya, pomegranate, passion fruit) contain their own enzymes so I often add them to smoothies or beverages.
Frankly, I sort of throw anything with detoxing effects and/or antioxidants that I can handle at my gluten reaction. When I was first diagnosed, I attended a Gluten Intolerance Group (GIG) conference where Dr. Christine Doherty of New Hampshire gave a presentation on super foods and shared her “Super Juice” recipe (green tea, water, cranberry juice concentrate, pomegranate juice concentrate, cinnamon, and stevia) . (Dr. Doherty is a naturopathic doctor now practicing at Balance Point Natural Medicine.) I started making Dr. Doherty’s Super Juice recipe for friends who were battling illnesses and used it myself for when I was under the weather. Dr. Doherty drinks her Super Juice daily to help bolster her immune system and that’s a terrific approach, but I usually make it when I’ve been glutened or my health is otherwise compromised. I drink my Super Juice, cold, warm or room temperature, sipping on it until it’s gone. It’s really a terrific recipe. I contacted Dr. Doherty and she graciously agreed to share this recipe with my gfe readers—woohoo! Today’s post is already plenty lengthy, but you’ll find Dr. Doherty’s Super Juice recipe here.
UPDATE: One new product that I’ve found to be extremely helpful to me is activated charcoal. I really like the Bulletproof Upgraded Coconut Charcoal Capsules.” Update: Note that there is some controversy about how charcoal can adversely affect absorption of prescription medicines and supplements. Some doctors recommend that charcoal needs to be taken 2 hours before or after any medications or supplements. Keeping that in mind, I typically adjust my meds and supplements schedule slightly if I end up taking charcoal because I’ve been glutened. As always, consult your doctor or other medical healthcare professional.
Let’s see what everyone else has to say about being glutened and how they recover. (My sincere thanks to all of you who offered your thoughts and solutions!)
Alta (Tasty Eats At Home) ~ “I’m personally a big fan of green smoothies and other very clean “detox” type foods (I eat VERY carefully and very cleanly, and don’t even try to touch anything that remotely bothers my tummy), ginger tea (made with fresh ginger – I sometimes drink store-bought ginger tea but a glutening definitely deserves the real deal), cultured foods such as kombucha tea and Bubbie’s sauerkraut over the next few days, as well as bone broths, if I have any in the freezer. I try to get as much rest as I can grab. If I have heartburn (a common issue after a glutening for me), I try to incorporate apple cider vinegar in – it seems to help more than resorting to Prilosec or some other remedy. Sometimes a tablespoon in some water works wonders. I also prefer yoga to other exercise to allow my body to heal. Lastly, I warn my husband, if he doesn’t already know, that this glutening has occurred and to try not to take any emotional outbursts from me to heart. I have a tendency to get quite weepy and frustrated over nothing!”
A few days later, Alta sent me another comment on being glutened:
“So you know how I gave you all these things I do when I get glutened? Apparently I was lying. In real life, I ignore it and pretend I’m fine! LOL Sunday we went out to eat at a place we’ve been dozens of times without incident. I crunched down on what was likely a piece of breading from chicken fried steak or something. I had a mini-panic, spit it out, told myself that maybe it was a piece of fried potato and not what I feared, but damage was done. I’m not too bad off, but instead of taking care of myself, I worked in my kitchen when I got home, doing my usual Sunday prep for the week, plus made dinner for my sister and her family, cleaned up a bit, etc. I was dropping things and being forgetful and struggling but I ignored it. Yesterday I admitted to myself that I did indeed get glutened – my tummy wasn’t about to play along with these lies – and besides, from Sunday evening on, I was EXHAUSTED. Then, because I ignored better judgment, this morning, I was rewarded with a sore throat. Hoping it’s not really a cold – but I’m afraid I am learning my lesson – don’t take care of yourself, and your immune system can’t fight normal everyday stuff. Guess I should take my own advice, huh? LOL”
Alta and I exchanged a few more messages on this topic. I told her not to beat herself up and that denial often plays a large part in our gluten-free lives. She reminded me that “Denial” is one of the stages I wrote about in my Grieving Gluten post. While denial wasn’t addressed in exactly the same context there, it is always an important thing to acknowledge. We need to listen to—heed—what our bodies are telling us.
Many more weighed in with their remedies or thoughts on being “glutened.”
Ellen (Gluten-Free Diva) ~ “My first solution (which probably isn’t the best from a detox standpoint!) is to take a couple of ibuprofen. That always reduces the inflammation and helps me sleep. I then try to drink as much water as possible in the days following AND I try to eat as healthfully as possible with little or no exceptions. That always tends to work for me.”
Tia (Tia’s Kitchen and Garden) ~ “I don’t really have anything I do besides time. It has only happened a couple of times since I have had a strong reaction. Both times it was in the middle of the night, and if I hadn’t known for a fact that I hadn’t been drinking, I would have said I drank too much. That’s just what it felt like. So, I laid on the floor in the bathroom until I felt safe to go to bed. Then I just took it easy with food and drink the next couple of days, just like I was recovering from a hangover.”
Steve (formerly Gluten-Free Steve and The Grateful Celiac) ~ “For me, if I get glutened bad, I take it easy for a few days. Basic bland foods until my system gets back on track. Plain chicken with salt and pepper. Boiled potatoes. Maybe some bland noodles until my stomach feels better again. I’ve not found any super fast cure/treatment – I just never know what will help me feel better.”
Gigi (Gluten-Free Gigi) ~ “I always start with ginger tea: 2 teaspoons fresh grated ginger root in 8 ounces boiling filtered water. I take 3 to 4 cups of this for detoxing the system. In addition, to replenish minerals lost, I eat 3 black sugar cubes (from Asian market) per day. Plenty of room temperature water on top of this, up to 1 gallon per day. I limit foods to anti-inflammatory foods like kale, blueberries, green tea, ginger, etc. Smoothies are a great way to incorporate these into the diet when you’re under the weather, especially if you have severe GI symptoms from being gluten’ed.”
Erin (Gluten-Free Fitness) ~ “For me, if I’ve been glutened, I take digestive enzyme capsules as soon as possible, and then continue with them throughout the period of time I feel sick anytime I eat something. I stay very well hydrated and drink lots of water and soothing teas, like chamomile, mint, and marshmallow. If it’s really bad, I will take activated charcoal capsules. I keep any food intake very mild and minimal until I am feeling better, I generally stick to fruit and eggs or protein shakes if I feel really horrific, with some homemade yogurt for the probiotics. I will also double up on L-glutamine for at least a week, and if I’m not taking probiotic capsules at that point I will begin again.”
Naomi (Straight Into Bed Cake Free and Dried) ~ “I would second the Epsom salt baths and especially the bone broth. My personal solution has always been to cut everything out that is not healing for the gut, until things are back to normal. This means, no grains, nuts, pulses, sugar, dairy, alcohol or cocoa for a period of a week to four weeks depending on severity. Things to eat are: stews, soups and broths – drinking just broth every hour for the first 24 hours can help too. Slow cooked meals are the best, meat on the bone and easily digested vegetables such as squash, carrots, spinach, and leek are the best to start with. Adding a raw egg yolk to each bowl of stew (up to three per day) makes the meal even more nourishing and creamy! Then start bringing in fermented dairy (yogurt, kefir and cheese), nuts, pulses and finally grains and sugars when you are ready. The process takes a different amount of time for everyone.”
Maggie (She Let Them Eat Cake) ~ “If Pete has been glutened (he has celiac disease) he usually gets flu-like symptoms. Things that have helped in the past: lots of water, a low-glycemic diet for a few days, rest, lots of veggies and fruits, no foods that promote inflammation, nothing spicy, and if it’s really bad, a trip to our Naturopath who gives him a Homeopathic remedy. It’s basically the same treatment if the kids get glutened too. I am only wheat intolerant so I get bloated if I have wheat. A trip to the osteopath always helps me. We avoid western medicine where possible!”
Valerie (City | Life | Eats) ~ “For me, exposure to gluten results in joint stiffness, a headache, fatigue, a feeling of sensory overload, anxiety and, finally digestive distress coupled (illogically) with a ravenous appetite. The symptoms are the worst the first day, though I then have a couple of days of not feeling so great (kind of how I feel after getting a cold) and needing a lot of sleep. Food-wise, I focus on filling but easy to digest juices, smoothies and soups, as well as roasted or mashed sweet potatoes with almond butter. I generally start with smoothies and as I start to feel better get more ambitious in terms of prepping other things, though the last time I was glutened it was all smoothies for 2 days, and some roasted sweet potatoes which my husband made. I always think about doing things like restorative yoga or booking a massage, but never do much beyond going for walks, sleeping, and just generally focusing on what needs to get done (ie work, sleep, eat) and putting everything else on the backburner. I handle cross-contamination glutening in the same way food-wise, but need less rest, as exposure through slight cross-contamination (as opposed to inadvertent consumption of a more significant amount of gluten) tends to affect my joints and digestion more than anything else.”
Iris (Iris Higgins) ~ “A few things that help me or my housemate after being glutened: Yoga (especially kundalini yoga), Epsom salt baths, and drinking lots of water. Sorry that’s all I can think of…there really isn’t much that helps me other than time. It usually takes a day for me to feel normal again, and I just have to wait it out.”
Linda (Gluten-Free Homemaker) ~ “One thing that helps me after being glutened is to sleep. Quite often I react by becoming very sleepy, no matter what time of day it is. I find that if I can just drop everything, go to bed, and sleep until I wake up, then I feel much improved. I also find that taking enzymes along with food or shortly thereafter results in less severe symptoms. I try to take them when I am eating processed foods that are likely to have some contamination (such as breads or cereals) or when eating out. I use these gluten peptide enzymes. Just remember that the enzymes are taken as a precaution, not as a means to allow you to intentionally eat gluten.”
Sea (Book of Yum) ~ “After being glutened, I find I am dehydrated so I have to drink a lot of water. I also only eat very plain food, like a baked potato, the next day. Not a lot I can do, except wish it would be over and I felt like a human being again. :=(”
Lillian (Lillian’s Test Kitchen) ~ “When I’ve been glutened: I need to drink a lot of water, sometimes I vomit, I take a bath, take an anti-inflammatory (like OPC 3) and go to sleep. I’ll sleep for 12 hours easy. I try to also give myself a break and not expect myself to be on top of my game. But I also spend a decent amount of time being irritated about what’s going on and then reminding myself that it’s out of my control. I also do my best not to take any of my emotions too seriously over the next week or two since I know it makes me seriously depressed and bloated. That’s kind of it. I think. It’s been a little while since it happened.”
Wendy (Celiacs in the House) ~ “I take extra Align, eat lots of watermelon and pineapple and drink water. My symptoms are swelling and joint pain and the watermelon and pineapple seem to help me throw off all the water/swelling. Bromelain helps with that too.”
Heather (Celiac Family) ~ “I wish I had some wisdom to share for the kiddos who get glutened. Unfortunately, I don’t have anything great to add. Most of the time, I’m not even sure if my kids got gluten or if they just got sick. It’s hard to tell exactly what they’re feeling to know the difference. So, for my family, even the adults who get gluten, we just wait it out by eating right, drinking plenty of fluids, and getting rest.”
Kim (Cook IT Allergy Free, now at Healing the Gut) ~ “The main things that I do whenever I believe that my family members have been glutened is a three-step process: 1. I give them my Homemade Bone Broth – I add it to everything: soups, use it in their pasta and rice in place of water, I add it to my sauces. 2. I give them an intestinal healing supplement that enhances the mucosal layer of their intestines – it contains marshmallow root, cats claw bark, quercetin, slippery elm, turmeric, and ginger root. And 3. I also give them digestive enzymes for a number of days after to help take the stress off of their intestines while they are trying to recover. That is all I do. The biggest factor is time for them.”
Looking at all these inputs, the same words and messages seem to come through over and over again.
Heed. Hydrate. Heal. Observe. Note. Nourish. Observe. Remove. Rest. Recover.
We’ll improvise a bit and come up with the acronym HONOR …
HONOR your body after being glutened.
Heed what your body is trying to tell you. Don’t second guess yourself and dismiss your symptoms.
Hydrate by choosing hot or cold beverages (water, tea, smoothies), soups, etc.
Heal by choosing options cited that work best for you.
Observe what works and what doesn’t for you this time and every time you get glutened. Not all gluten exposures are the same.
Note the protocol that works for different symptoms.
Nourish your body with healing, non-inflammatory “food and drink.”
Observe (again) what works and what doesn’t.
Remove the toxins from your body with detoxifying foods, supplements, movement, and other activities (e.g., hot, steamy shower).
Rest. Get additional sleep. Don’t overtax your body. Listen to your body’s need for rest.
Recover by doing all of the things listed above, tuning in to what your own body needs for recovery. Tweak as necessary, each time you get “glutened” and during each day of recovery.
HONOR your body.
I hope you’ll find all these tips and ideas helpful when you need to know How to Recover After Being Glutened. Please share your own remedies to recover from being “glutened” in the comments. (Note: I’ll ask all to refrain from sharing information on any product that states that one can eat gluten safely as long as one consumes the product. Such a product does not exist. Please do not be fooled by such claims.)
Originally published November 11, 2011; updated May 5, 2022.
SherriS. says
I’m always surprised when I get glutened and it takes a day or two to sink in. I normally lie down feeling like a herd of elephants has walked over my tummy. I sip on ginger ale made with stevia and drink plenty of water. I always want a GF pre-made rice pudding. It makes me feel like it soothes my belly.
I normally try to limit milk in my diet…go figure.
Shirley says
Hi Sherry–Thanks so much for taking the time to comment, dear! 🙂 I think that it’s just human nature for us to be in denial and charge on … maybe thinking that it’s not gluten, that we have a bug, that we’ve overdone it, etc. Your remedies sound comforting for sure. I am not 100% dairy free and part of it is that comfort thing from dairy. But it actually makes sense because dairy has that same type of opioid effect that gluten does.
Shirley
Suzanne says
I have posted on this forum before. I have been gluten free for about a year, so I still consider myself new at it. A week ago, I was at a new restaurant in my town, in Costa Rica. They were serving Ceviche, and I could not eat the soda cracker, so I asked for some tortilla chips which are usually pure corn here. Well, they were homemade and I did not realize until the next day that I had eaten wheat. I noticed a strong craving for wheat in the grocery store the next day (which happens when I eat a little) and then I was on the couch exhausted with torpor and tiredness. I was like this on and off for three days. The only thing I could do was drink tanks of green tea, rest and take Sudafed, which removed the torpor and lasstitude immediately.
I have also been constipated since, and things are finally coming back to normal. My gut seems to shut down.
If I had ANY doubt that I cannot eat gluten…this experience removed it.
Thanks Shirley and all.
Suzanne
Shirley says
Suzanne–There’s a whole group of comments here that I swore that I responded to and yours is one of them. 🙁 The only “good” thing about getting glutened is the proof, once again, that one can’t tolerate gluten and how marvelous one feels on a gf diet in comparison, right? 😉 I always feel for those who get glutened. I know the pain (literal and figurative) and how long it takes to get back to normal.
Shirley
Suzanne says
Hi Shirley and all,
Hi Shirley, you DID answer, and the thread seems to have jumped ship! I am feeling great now. I have moved from Costa Rica and I am living in a new town, Ashland. Oregon with and incredible organic Co-op and an abundance of WHEAT FREE options. It is like being in GF heaven! I have lost weight on a GF diet and I am so happy to have my mental acuity back. I feel loved and loving as my Gluten Free life unfolds. Thank you for your support.
Shirley says
Hmmm, Suzanne, I see that now. I’ve got my tech person investigating as we need all those comments to show up! There’s much wisdom and support in them. 🙂 Yay on moving to gf heaven, your weight loss, and regained mental acuity (I know exactly what you mean—such a gift!). I’m so happy for you and your new gluten-free life!
Shirley
Suzanne says
Thanks, Shirley for your last comment. One of the things that I noticed about the mental acuity, is that wheat (for me) and gluten as a whole is absolutely detrimental to mental sharpness. In order to get my brain working again, I have been doing Lumosity (www.lumosity.com). It is a brain training website that gets everything working again with measurable results. It has been extraordinary for me. I had started to realize that my brain was not working properly, so I took steps to remedy it. I have been doing Lumosity for 6 months and it has changed my life. I could NOT EVEN TYPE!!! Now, I type quickly, do mental math, think quickly and I feel WHOLE. I highly recommend it. Thanks, Shirley
Iris says
Wonderful advice! As I was reading through, I kept nodding my head, thinking, yeah I do that! Didn’t think of it when you asked though…oops. I appreciated that Ellen mentioned taking an ibuprofen. I hate to do that too often but the truth is, it helps me a lot more than many other things. I’ll definitely bookmark this post as a reminder of all the things I can be doing for my body, not just when I’m glutened, but on a regular basis.
Shirley says
Hi Iris–Thanks! Well, that’s why I wanted to do this post because when folks ask for help, I can’t always remember all the good advice. Heck, I can’t even remember all of it for myself each time. Gluten-induced brain fog doesn’t allow one to know all the possibilities and responding on the run even when not glutened doesn’t either. I don’t think we should feel badly about doing what helps us. I think when we don’t usually take it that when we do it can be so much more effective. We all need to do what we feel comfortable with (within reason) and not beat ourselves up, don’t you think? 😉
Thanks again, dear!
Shirley
RM says
You should take Ibuprofen or other anti inflammatories to ward off the autoimmune attack from ingesting gluten. My boys have autoimmune brain disease and this temporarily stops the symptoms when they have an attack, and I have Hashimotos disease and know to take Ibuprofen when I have tender thyroid, a headache or a goiter. It helps cool off the inflammation. Celiac is autoimmune, so should respond the same way. Some naturopaths give their Celiac patients who won’t stop eating gluten low dose naltrexone to keep the antibodies low and the damage to a minimum, and it gets rid of excess opiates in the system caused by dairy and wheat.
Shirley says
Hi RM–A very belated reply I know, but I do appreciate your comment. I am aware of the use of low dose naltrexone by alternative practitioners for treating those recovering from gluten issues, but I didn’t know it was given to those who continue eating gluten. It makes me sad whenever I hear about celiacs continuing to eat gluten, but I do appreciate that info.
Shirley
Natalie T. says
I’m newly gluten free.. I found out October 2010, so needless to say I’ve been glutened fairly frequently unfortunately. I feel the gluten react negatively with my body within 5 bites of the food that is contaminated; but once I feel it it’s too late.. I will have terrible stomach pains that I feel I can only relieve if I squeeze my stomach right where the pain is coming from; always above my belly button right in the middle of my stomach between my left and right ribs. I know it sounds weird but squeezing as hard as I can will sometimes relieve it.. So I get the severe pains the same day and after 6-8 hours I get extremely nauseous. So i take usually 4 pepto bismal pills every 30 minutes for 3-4 hours and it usually gets better. Then the next day I wake up and almost immediately vomit stomach acids but the worst thing is I get no warning before I vomit so I have a trash can next to my bed when I’ve been glutened( just in case!!)And I get very dehydrated so constantly drinking water helps with the dyhydration and I eat peppermints like there going out of style because they really settle my stomach. During this time I’m extremely tired and remain exhausted for up to 8 days after being glutened. 8 days was the longest my symptoms have ever lasted. Not only am I tired, but my stomachache stays and I get migraines that are debilitating and nothing but complete darkness and sleep helps that.. I eat alot of chicken with rice soup and I eat alot of toast which I feel helps to soak up the excessive acid my stomach produces when I’ve been glutened. It kicks my GERD into high gear! Also I eat red apples. 3 or 4 a day and it really helps my dehydration and also works as a natural fiber supplement and allows me to get rid of alot of the “poison” quicker then if I didn’t. I also have SVT that is activated my gluten so I get severe erratic heartbeats that have had me in the hospital because I have a heart rate monitor that reads 246 per minute!! And I’m sure you all know 60-100 beats a minute is considered normal. So needless to say it’s alarming to read 246+ per minute; but I’ve found nothing that helps me with that that doesn’t involve an IV and a very expensive hospital bill by the end of the night.
It’s really great to read what things help other people heal
after being glutened. I’m only 19 and was sick for almost 3 years until we found out last year what was wrong with my
stomach and what was poisoning me. And I’m always looking for remedies that will expedite the healing process so I’m not missing a week of work at a time because I can’t move. Thanks so much for writing things like this are really helping me get used to this gluten free lifestyle!
Christine says
To the young lady that eats peppermint candies. Please make sure they’re gluten-free as you might be making yourself sicker and not even realizing it.
Try peppermint tea with agave, honey, stevia instead
Shirley says
Hey Christine–Thanks for the reminder on checking ingredients and the alternative suggestion. 🙂
Shirley
Christine says
The desire to massage your abdomen isn’t strange. You’re intutively wanting to move the qi and food to rebalance. Try placing your left hand above your navel, right hand below. Use enough pressure inward to move your organs when maing circular motions with your hands. Not too much or too little. Your abdomen will let you know. This can be done every day as a tonic treatment and when you’re not feeling well to help rebalance. You might try reading about Qi Gong, Nei Gong.
Shirley says
Christine–Thanks for adding this perspective and info. Will definitely check out it out.
Shirley
Shirley says
Hi Natalie–I think this is your first time commenting, so welcome. 🙂 I really appreciate you sharing your story. I don’t think any of it sounds weird at all. It demonstrates how varied and how serious reactions to gluten can be. As I shared in my very first post, I used to hold my breath when I would get severe cramps like that. They were in that same area as yours, too. I’d hold my breath and count waiting for them to pass. It’s very likely that others reading will see similarities between their symptoms of being glutened and yours. I’m so very sorry that you go through what you do. I sincerely hope with time that you will be able to avoid being glutened and continue to heal so you can avoid these serious symptoms. Thanks so much for sharing what does help you, Natalie. The standard wisdom says that being diagnosed and going gluten free easily will prevent a multitude of symptoms and illnesses later on in life, so that’s very encouraging. So glad that you are here at gfe!
Shirley
Shirley
ivan preudhomme says
I actually get that pain the same location between ribs when i eat gluten
Tia @ Glugle Gluten-Free says
Fabulous post, Shirley! This was so needed. I will be bookmarking it too. Thanks for all of the hard work on this one.
xoxo,
Tia
Shirley says
Hi Tia–Thank you! Thanks for your input, too. I think it’s so important for folks to see that reactions are all over the map and that we don’t always have immediate solutions. It’s nice to have a reference point now though. -)
xo,
Shirley
Emily says
After being gluten-free for one month, I decided to eat anything I wanted for one day and see what happened. (Yes, I’m in denial.) I certainly enjoyed that day, but the next four were miserable. Fatigue, headaches, anxiety, yuck! As much as I miss gluten foods, I’m not at all sure that 4 days of ick in payment for eating cake is worth it. 🙁
Thank you for all the ideas for how to recover. Many of them make lots of sense, although I do wonder how you go about making yourself do all these “good for you” things when you’re feeling tired and sick ? I feel like my willpower is the first thing I lose!
Shirley says
Hey Emily–It sounds like you are learning for sure. I’m pretty certain that you absolutely know that 4 days of suffering is not worth it. And really, there are so many amazing gf cake recipes. But you are so, so early in the process. You will learn, you will “get this,” you will move forward strong and healthy. Knowing that even a teeny tiny bit of gluten is damaging your body can be a pretty powerful motivator. And believe it or not, the longer you stay away from those products, the less you will want them or be tempted. As I was saying to another reader, gluten has an opioid effect. It has to be removed for a while before those cravings stop. I actually recommend staying away from gf breads and such for a while, too, so even that bread craving stops. Continuing to eat those products (that are so refined) not only doesn’t provide optimum health, but it also keeps all those carb cravings going. Without the cravings, one’s willpower can be incredibly strong. 🙂 Food for thought.
Shirley
glutenfreeforgood says
Shirley,
Great collection of tips and comments. “Honor your body” has definitely been my ongoing life-enhancing mantra, so I couldn’t agree with you more. A committed yoga practice, occasional nourishing cleanses, and a predominately whole foods diet helps to avoid (or at least mitigate) the potential for being zapped by gluten in the first place.
Second, it’s a healing answer if you are zapped. I mention yoga first because a committed yoga practice brings a deeper awareness of what’s going on inside, practically at a cellular level. The more we explore and understand our inner space, the more we appreciate and respect the magic of the human body. The more we appreciate that magic, the more we honor our bodies on a daily basis. We (our bodies) are constantly trying to find homeostasis (stable and balanced physiological processes). If we truly honor that and continually provide ourselves with the right cellular building blocks, we’re half-way there if we do hit some road blocks (gluten, toxins, viruses, stressful events, etc.) along the way. We’ve got a good foundation to work with. The healing breath work and movement of yoga helps detox the body and nourish the spirit. A warm environment also helps (via sweating), as does quality sleep and stress reduction. It’s about focusing on a healing and balanced lifestyle to begin with. As I always say, it’s very simple, but not easy. =) Emily (comment above) is so right. When you feel bad, willpower is so hard to find. It can be downward spiral. We’ve all experienced that. And, that’s why starting as strong and healthy as possible is so important. We need to take care of ourselves all the time, not just when we’re down and not feeling good.
Sorry for the ramble, but anyway, we’re all in this together, so supportive posts like this are wonderful. Good job putting all this together, Shirley. It will be a great resource for people.
Peace, love, whole foods and yoga.
Melissa
Shirley says
Hi Melissa–It’s a honor to have you weigh in on honoring one’s body all the time! You make such excellent points; it’s not a ramble at all. I love how everyone is weighing in for the overall good, but offering such different insights.
I appreciate your kind feedback, dear. I’m lucky to have so many blogging friends who are willing to contribute to the discussion! 🙂
xo,
Shirley
Wendy @ Celiacs in the House says
Shirley, this is such a valuable post on so many levels. It gives great advice on what to do, but it also shows the various and many symptoms we all have. Of course, this is exactly why gluten issues and celiac have been so hard to diagnose. What a collection of ways to feel rotten. It also highlights the emotional issues of not heeding what our bodies are telling us, beating ourselves up about it, the emotional rollercoaster of a gluten ‘hit’ and how easy it is to get caught up in that and not take care of ourselves. Beautiful job of using your network of gluten-free friends to compile a great resource. Looking forward to more of this from you!
Shirley says
Hi Wendy–Thanks, dear! You are so right about what all of these comments offer in the end. That emotional rollercoaster thing is an especially tough one to fight. So, we all need a cheat sheet of these symptoms and solutions posted nearby. 🙂
Shirley
Gigi says
This is terrific, Shirley! Thank you for including me, and thanks to all of the others who contributed… These are fantastic tips for taking care of yourself (or someone you love) after you (they) are exposed to gluten. Now, off to share this fantastic info with my readers!
xoxo,
Gigi 😉
Shirley says
Hey Gigi–You’re welcome, of course, but I have to thank you for your inputs, too. 🙂 Your ideas were mostly new to me. I, and many others, will be hitting our Asian grocery stores soon so we’ll be ready for the next time, thanks to you! 🙂
xoxo,
Shirley
Pat @ Elegantly, Gluten-Free says
When disaster strikes — that’s how I think of it when I’m glutened — all I can do is the same thing that works for any stomach flu: drink liquids, take it easy, eat “soft” foods (that’s whatever seems gentle to a tender tummy). Actually, whatever I eat afterwards doesn’t seem to matter; it still takes about as long to recover.
And don’t eat whatever that was, ever again. That’s if I actually know what it was for sure. I may not know the exact bite or dish that made me sick, but I certainly know the sickness.
Shirley says
Hi Pat–I have had a similar experience with the foods I eat after being glutened not always seeming to matter. Once those tummy problems have started, I sometimes find that it’s hard to get the tummy back on track.
Thanks for sharing, Pat. Hope you found some new things to try for the future. 🙂
Shirley
Ina Gawne says
Shirley – this is such a great post, thank you! I pretty much do what you do yoga, pro-biotics, fish oils, etc. The last time I was glutened was almost two years ago. It was a small amount of cross contamination and I was a complete trainreck – could not even do yoga…did my best it was hell for three days! Apparently, there is a natural product we can get at health food stores where I live, can’t remember the name, but it is supposed to work wonders if you have been glutened. Next time we travel I will definitely buy some! Thanks again for a great post! 🙂
Shirley says
Hi Ina–I am in awe that it’s been almost 2 years since you were glutened. Is eating out a rarity for you? I will be interested to hear what that product is.
Thanks, dear!
Shirley
Kim (Cook IT Allergy Free) says
Well, you certainly did it up right. This is such an awesome resource for people! I even learned some new ideas from this. I am anxious to see what some other commenters do as well. At least knowing there are some options can really help to take the stress out of it. Thank you, once again, Shirley, for watching out for all of us!
xo
k
Shirley says
Hi Kim–Thank you! I love this post and all the comments already. 🙂 Thank you so much for sharing your family’s tips! Even in a family, each individual may well respond differently so it’s nice to have a long list of options. 😉
xo,
Shirley
Ellen @Gluten Free Diva says
Shirley, this is such a terrific post for numerous reasons. It is a great resource, one which I will return to again and again, as well as a post that I will recommend to the clients I will be seeing as part of my Holistic Health & Wellness Coaching practice. (Personally, I think it should be a chapter in a book you should be publishing!!!). Reading each of the responses reminds me that we are in fact, as I’ve been learning, bio-individuals – we each have our own way of reacting to everything whether physical, emotional, spiritual, etc. and as you reminded us and Melissa reinforced, we must honor ourselves for our uniqueness. I very much appreciate Iris reiterating, much to my chagrin, my success with ibuprofen. Please know that it is my intention to take it as infrequently as possible, as I know it isn’t good, truly, for us. But now that I have this resource, and all of these great ideas, I will be likely to try some alternatives before reaching for the ibuprofen. The other thing I’m reminded of, as I read through the responses, is something that I struggled with before my Celiac diagnosis (sorry to go on so long, but I’m happy to have a place to write this!). Over the many years that I’m sure I had Celiac Disease but went undiagnosed, I learned to put up with and accept my “normal” state. But as I look back on my pre-Celiac days, my “normal” state consisted of headaches and stomaches and constipation and constant colds and tons of canker sores in my mouth and emotional roller coaster rides for me and everyone around me. But I was SOOOO used to it, that I never considered it anything but normal. Isn’t this what everyone goes through? Now, fast forward 5 years later (I was diagnosed in early 2006), I think that once again, I’ve gotten used to a new “normal”, but one that still includes some level of not being totally healed in my gut. This is something, thanks to this post and all the great responses, that I am going to pay attention to with an increased awareness. Thank you for this and so much more!
Shirley says
Hey Ellen–Thanks for the sweet words, especially about that book. 😉 I’m so glad that you are finding this post helpful. Many thanks go to you and all the others who were willing to be open in sharing your thoughts. I agree that what we think is “normal” before going gluten free is a long way away from what is really normal, which hopefully, all of us eventually learn/experience after going gluten free. But it’s easy to accep the dramatic improvement in health and still not be quite right. Sadly, I think that can relate to products that we think are safe, but are not, and dining experiences that are still giving us low levels of gluten. Other things come into play, too, of course. Dr. Tom O’Bryan has repeated his mantra hundreds (maybe thousands) of times—“heal the gut, heal the gut, heal the gut”—on healing the gut by eating anti-inflammatory foods and ditching the refined foods completely after going gluten free, but how many of us really do that? I know I have a long way to go still.
Thanks and hugs, dear!
Shirley
Tonia C says
Since I’m gluten intolerant rather than celiac sometimes this whole issue can be really tricky for me. Did I get glutened or am I coming down with a cold? In addition to the gluten intolerance I have a dairy intolerance and I had tyroid cancer and have no thyroid. I’m learning to just honor my body ALL the time. Maybe I got gluten or dairy, maybe I’m getting sick, maybe my thyroid levels are bad….when I’m exhausted, I stop fighting it and I sleep. When I’m hurting more than normal I take a hot bath, do some stretching. I give in to the feeling of being overwhelmed and ask my husband to deal with the kids and do something soothing for me- like knitting or sewing or whatever. In short, I put my needs somewhere at the top of the list which I have never, ever- in 34 years- done before. It’s been a huge change for everyone, not the least me, but it’s what I need to do if I’m going to grow old and watch my kids grow up, so I do it.
Emily says
What do you do if your husband is feeling overwhelmed and wants you to take the kids, too? I’m running into this a lot lately – it is awfully hard to “honor” your body’s needs when you have three small kids and a husband who doesn’t feel able to take over while I rest. 🙁
Amy Jane (Untangling Tales) says
Back when my three were little I wrote about helping Dad help. (http://untanglingtales.com/?p=171)
Maybe that will give you some ideas?
You’re in a tough place, I can tell. Can you swap babysitting with anyone? Are you in a place that has babysitting clubs? There was one in my area for a while where mom’s “paid” for regular babysitting by watching one anothers’ kids. They had a pool of moms and time and a system and everything.
I couldn’t keep up with it, but it was of great benefit for those whose life it fit.
Another thought (for the “next time”) is to double a meal like chili or baked chicken thighs and freeze the extras. That way when you’re knocked on your back you have something that only needs thawed, and the kitchen sink will do that for you.
Another thing my husband likes is just having easy meal ideas around: it takes all his creativity to keep the kids occupied, & trying to come up with food ideas can tip him over the edge.
Anyway (hope this doesn’t count as hijacking the thread), just email me through my blog or a comment if you want and I’ll try to give you some shortcut food ideas.
Though I’m sure the GF official foodbloggers have covered this somewhere already :}
Hope this gets easier as the kids get older. ((hugs))
Shirley says
Amy Jane–Just wanted to thank you for these helpful suggestions and sharing your post. My gfe tip sheets can be helpful to many in coming up with easier gluten-free meals. Also, my friend Kate at Gluten-Free Gobsmacked, who is the mom of two little ones and a full-time teacher asked her readers for help in cutting costs and getting meals on the table more quickly. She received lots of helpful advice. Her readers’ tips can be seen here. Hope all of these ideas will be helpful to many!
Thanks again, Amy Jane!
Shirley
Shirley says
Emily–If you don’t have other family members nearby who can pitch in and help, how about church members or support group members? Have you joined a local support group? They can be extremely valuable for needed emotional support and friendships with those who “get it”? I’ve made friends through the support group I lead (and another one I belong to) that I count as some of the most treasured friendships of my lifetime. While I don’t have a child at home any more, my friends and I have a wonderful support system (that’s the definition of friendship, right?). Maybe if you have friends/family members who you can help from time to time, they’d also be there for you. Most folks really want to help others, but so often the “others” are not willing to ask for help. Let your friends know you could use some help. They’ll probably jump at the chance to help out by taking your kids for a play date, etc. Just think about it … there might be some solutions you haven’ t considered or were unwilling to pursue. Because as has been shown here in comments, we doubt ourselves, we’re reluctant to ask for help, we try to “soldier” on, etc.
Hugs and healing to you, dear,
Shirley
Shirley says
Hi Tonia–Thanks for taking the time to comment and to express something many others struggle with … that “not knowing” thing. For me personally, I simply never get sick unless I get glutened. Folks will “poo poo” that, but it’s true. Others I know say the same. I can have similar issues to those I experience with gluten with dairy and soy, and even sugar as well, but they are not exactly the same. The longer that I’ve been gluten free, the better I’m able to recognize which is which. Thyroid health is a key factor in fatigue though, so you’re right to get those levels checked when you are not feeling right. (Especially for someone without a thyroid, they need constant monitoring.) It’s absolutely right to take care of yourself the way you are doing and ask for help. We women tend to suck at that frankly! But why should we be the Energizer Bunnies? We don’t need to be the biggest part of the “pie chart” for all the daily duties. The truth is that that’s often a large part of how we burn out our adrenals, another common issue with those of us who have gluten issues. Thanks so much for sharing, Tonia. I hope you’ll keep learning to recognize symptoms and avoid those tougher times, but yes, always, honor your body. 🙂
Hugs,
Shirley
Naomi says
Great post Shirley! It’s interesting to see how many of us are instinctively reaching for the fluids, bone broths and antioxidant foods. Keep sharing this instinctive wisdom!
x x x
Shirley says
Hey Naomi–Thanks, dear. I so appreciate your input to the post. I do believe that after going gluten free and learning to heed what else our body doesn’t tolerate, that we also start to learn what heals our bodies. Great point! 🙂
xo,
Shirley
Karen says
The first thing I do when I realize I’ve been glutened, is take charcoal capsules. Just like we learned in high school biology, charcoal absorbs whatever is in your gut and that includes helping move gluten out. Charcoal is cheap and you can find capsules in most pharmacies, health food stores, or vitamin shops. Charcoal absorbs toxins well. I take charcoal every two hours until things slow down….for me when I get glutened, my gut speeds up really fast. When things start to slow down, I add in enzymes and probiotics. I wait a couple hours after the charcoal and I double up on how much of those I take…then I alternate, charcoal, 2 hours later enzymes and probiotics, 2 hours later, charcoal…. I eat light keeping to tea, chicken broth and soups until things start to feel better. Rest, gentle exercise, if I’m up to it a hot epsom salt bath or a sauna. If I don’t have to work, I curl up with the fire and a movie and treat myself to a little extra downtime as much as possible to give my body a chance to rest and heal.
Shirley says
Hi Karen–I’ve thought about taking charcoal when I’ve been seriously glutened before, but don’t have a local store that carries it. Keeping it on hand would be a good idea. One of my doctors recommended it and you can see that others here use it after being glutened. I appreciate your comment and detailed instructions. Very helpful!
Shirley
Christine says
A couple of thoughts.
Using musilagenous herbs like Slippery Elm, Marshmallow, etc, can exacerbate rather than help as they tend to feed pathogens and inhibit probiotics.
Ibuprofen is very hard your kidneys and intestines, causing even more inflammation while also straining your liver as it works to detox your system. I don’t even keep it, Naproxin, aspirin or Tylenol in the house at all. I use Formula 303 (homeopathic) to calm spasms, anxiety, headache, insomnia, inflmmation. Traumeel (from Heel) is an excellent homeopathic for reducing inflammation. I use the tablets and topical gel. I also use other Heel formulas for Allergy, Asthma, Headache, Flu, joint pain, etc.
I like to keep it simple the first 48 hours and stick to liquids: purified water, broth, soup without chunky bits, diluted juice, unsweetened coconut beverage, weak Green tea, Rooibos tea, Ginger either fresh, chews or crystalized as tea, Chrysanthemum, Hawthorne Fruit (both aid the liver and help clear that heavy like bricks, crampy “stuck” feeling).
I tend to skip the probiotics until diarrhea and/or vomiting pass as well as daily supplements. I don’t like to overload those first 48 hours or so.
I really like “Yoga in Bed” (DVD and book). They are very gentle exercises that can literally be done in the comfort and warmth of your bed, chair. I do modified Qi Gong and Nei Gong (a form of mdical self-massage) in bed, comfy chair or possibly while standing in the bathroom.
I don’t do Epsom Salts or hot showers as I don’t tolerate heat. I’ve had TBI and gluten attacks my nervous system, making it difficult to sweat. I keep comfortably warm, making sure legs and feet are covered, especially knees even in summer. There are very important acu-points around the knees and feet.
I developed what I do to adapt to situations where a tub and/or shower may not be available, like when traveling.
Shirley says
Thanks, too, for these suggestions Christine. I haven’t heard about Yoga in Bed, but it makes perfect sense. 🙂
Shirley
InTolerant Chef says
Fantastic tips! I find my body tries to do most of the gluten purging for me (violently and messily!) But I’ll try these ideas after, as it certainly does take time to recover.And I’ll be ready for the next time the gluten gets me!
Shirley says
InTolerant Chef–So glad that you are finding the tips so helpful. Hope you’ll be able to put them into action and they’ll work for you next time. Although I don’t wish that “next time” on any of us.
Shirley
Christine says
Know now that your body has been healing for a while (it takes up to 5 years or better to fully heal, reduce risk factors), it can rally a more distinct allergic or intolerance response. You may be able to distinguish that there are other irritating/allergenic/intolerant foods for which you haven’t accounted.
This is something I suspected before going GF 4 1/2 years ago. I found that certain carbs, particularly grains of any kind, would trigger a number of GI symptoms. There’s a lot of scientific research backing the GAPS diet and limiting SCD’S (SPECIFIC CARBOHYDRATES DIET) so intestines can heal from a variety of diseases, including Leaky Gut Syndrome and Gut Disbiosis which go hand-in-hand with Gluten Spectrum, Crohn’s, Colitis, IBS, etc.
The most uncomfortable symptoms for me was/is getting an esophageal spasms at the Cardiac Sphincter, just above my stomach and diaphragm, right in the middle of my chest, as I was eating. If that gets triggered, I have to stop eating immediately. I often need to vomit, then get reflux, indigestion, cramping and diarrhea for several days.
While I’m not strict about the SCD for GAPS, I stick pretty close to their OK/forbidden lists.
I’m suggesting these because while you may think it’s just getting cross-contaminated/glutened, it may be other allergy/intolerance issues emerging as well.
Jessica says
I am so careful so I am usually pretty mad when I am glutened! I usually feel like the flu- super achy, stomach troubles, weak and exhausted. I drink lots of water, hot tea, fruit and plain organic tortilla chips (since we can’t have crackers!). I lay down and relax to make sure my body can use energy to get over the gluten. Seems to work, but I still hate it.
Shirley says
Jessica–Yeah … I understand what you are saying. It’s so miserable that we tend to beat ourselves up often thinking that we might have prevented being glutened. That’s unfortunate because as you shared, we are in no way up to being beaten up any more. 😉 There are some gf crackers that are worthy of recovering. Laying down/resting/sleeping makes sense for sure. But I do understand hating “it.”
Thanks for sharing your experience, dear.
Shirley
Carol, Simply...Gluten-free says
What a great post Shirley and so helpful to so many. You are the BEST!
xo,
c
Shirley says
Hi Carol–Thank you! You always make my day! 🙂
xo,
Shirley
megan says
I’ve only been gluten-free since last december but it seems like I get glutened All The Time, I usually just stick with fruits & veggies with the least amount of grains possible, especially corn and I also stay away from buckwheat and quinoa(too hard for me to digest). I usually sleep forever afterwards(about 12hrs) and I take it easy the whole time I’m still sick, I haven’t come up with a good solution yet so I’m so glad to hear other the solutions on this post!
Natalie T says
Hi Megan–
As you can see in my post I’m newly gluten free as well do I truly understand when you say I feel like I’m getting glutened all the time. I that’s what things like this are for. I’ve gotten ideas that may help tremendously!
Thanks for writing,
Natalie T.
Shirley says
Hi megan–Thanks for sharing what you’ve learned so far. It will be really helfpul to folks. After giving up gluten, many of us don’t want to give up other or all grains, but sometimes we find that’s necessary. Sleep is a common reaction/need after being glutened it seems. Interestingly enough, when I look back to illnesses before going gluten free, there were all weekends that I slept nonstop. Perhaps those were weekends that I was way overloaded on gluten.
Hope some of these ideas will work for you!
Shirley
Lexie says
So, so helpful! Thank you will share this one for sure.
Shirley says
Thank you, Lexie! I hope this combined post and response will “grow” and help so many. 🙂
Shirley
Michelle says
This is wonderful! Thank you for compiling this info for us all! In addition to other therapies already mentioned, I will take several capsules a day of Bladderwrack to help me recover from being glutened. It is a specific sea kelp that prevents the adherence of some unwanted microorganisms such as H. pylori to the cells lining the digestive tract, and I personally think it helps prevent the inflammatory gluten from adhering as well, and my other efforts (super hydration, juice/smoothie diet, etc) can flush it out sooner and I can be restored quicker. And according to Dr. Peter D’Adamo: “The fucose sugars in bladderwrack can beneficially impact immune system health by stimulating immunoreactions of the humoral and cellular types, and by enhancing the phagocytosis (or consumption of invaders) by your macrophages. These same complex fucose sugars also offer several advantages that counter the tendency to inflammation. Essentially they block the recruitment or inhibit an overly aggressive inflammatory immune response at sites of inflammation.”
Shirley says
Michelle–Thanks so much for the kind feedback and your response! I’ve never heard of Bladderwreck before. I’m definitely going to check it out as options for countering inflammation sound good to me.
Shirley
Heidi @ Adventures of a Gluten Free Mom says
Oh Shirley, this is such an great post! As you know, I never feel any outward symptoms when I get accidentally glutened which is extremely frustrating because it’s easy for me to continue eating foods (or at restaurants) and not know how much harm I am bringing to myself – until it’s too late and I have a serious medical complication.
If I could offer any tips, it would be to talk with your gluten-free friends who are sensitive to glutening symptoms and ask which foods cause them repeated “issues” and avoid those foods yourself. You have been a lifesaver to me in that regard, Shirley.
No symptoms does not equate with no damage!
Off to share this fantastic post!
P.S.
LOVING the new look over here at GFE!!
xoxo,
Heidi
Shirley says
Heidi–Thanks for sharing such a great suggestion! It’s definitely true that a lot of folks do not have visible reactions, and we don’t want them to wait for disturbing follow-up blood work, more serious medical condtions caused by gluten exposure, etc. So maybe “we can get by with a little help from our friends.” 🙂 I appreciate you sharing this one, Heidi. And thanks for the sweet words on the tweaks to my site, too. 😉
xoxo,
Shirley
glutenfree says
I would love to hear supportive ideas from people who get *skin* symptoms after being glutened.
The food and drink ideas are lovely, I’ve tried almost all of them, but for me, someone who gets excruciatingly painful DH skin symptoms, none of that detox stuff subdues the inflammation or pain which can affect my physical body for about 3-4 days, and up to a week after ingesting gluten accidentally.
I spent most of my early years being 100% holistic with treating my symptoms, never managing to be pain free and often causing more harm then good. Leaving my body in a state of inflammation overload, and having the pain and itchiness of the eruptions affect my brain and body, where I can’t think or work or do anything but painfully exist while waiting for the herbs and diet to do their thing, which they never did btw…, led me to finally try conventional western medicine to help heal. I reached a point where I understood from painful trial and error, that keeping my body in chronic inflammation ( from ineffective holistic measures to heal my DH gluten symptoms…) is much worse for me and my well being than taking a short course of treatment with western medications.
After being glutened I get very, very fragile for about a week or so. Can’t exercise much, feel like I’ve got the flu all over my body. Very exhausting getting sick and glutened. I am meticulous about eating nothing that could be allergy inducing after it happens. I stick mostly to bland foods, easy to digest for me. Black beans with sea salt, bananas, fruits like apple sauce, mangos, spinach. No nuts. Drinking water.
People with DH symptoms, or any peeps out there who get skin issues after being glutened – What do you do to help heal yourself…? I would love to hear any experience or inspiration for healing that you’ve got!. Thanx! !
Janice says
The iodine in salt and seafood can make DH worse..I have to watch that all the time and not overload with salty foods. Hope that helps. 🙂
Shirley says
Hi Janice–Thank you so much for sharing this info about iodine. I do know that many of my friends with DH use non-iodized salt.
Thanks,
Shirley
Ron says
The only thing I have ever found that works is Cetaphil lotion, BUT I HAVE TO USE IT EVERY DAY. as long as I do, I get nearly zero skin reaction to gluten… Really great stuff!
Jodi says
I had a rash on both of my forearms for nearly 4 months. My Dr. Said it wasn’t from the celiac and suggested I see a dermatologist. I was sure it was celiac related, so I started paying more attention to my personal care products. I realized that the rash started around the time we purchased Dove soap in bulk at Costco. It made me wonder, so I went to the store and purchased several different soaps including Ivory, Zest, and Burt’s Bees soap with royal bee jelly and started to experiment. Within a few days of switching soaps, my rash began to clear. I have had some reactions since then, and now use only Zest or Burt’s Bees. They seem to do best for me.
Jodi says
Sorry, my last post had to be cut off for a serious discussion with my wonderful husband. We are having serious “responsibility” issues with our 2 entitled teenagers. Lol. I also wanted to say that I was diagnosed about 9 months ago. I also have gastroparesis and wil be having knee surgery soon for a torl ACL and torn meniscus. Though I have been gluten free since my diagnosis, I am healing very slowly. I still feel tired, anxious, sluggish and depressed most of the time. I also have daily severe abdominal pain and rarely sleep well. I think part of the problem is that the knee injury keeps me from exercising like I used to. Before the injury I walked 50 to 70 miles per week and had two jobs while attending college full-time. I know that I have had celiac all my life, and through the years the symptoms became progressively worse until I could barely function anymore. The only thing that kept me going was my highly physical lifestyle. After the knee injury nearly 2 years ago, I gained 40 pounds and the celiac hit me like a freight train. That’s what led to my testing and diagnosis. I was wondering if anyone else has seen a corellation between activity level, weight, and the occurence of symptoms?
I am so glad I found this website. It’s wonderful!! Thank you for taking the time to help all of us. It is deeply appreciated.
Jodi in Douglassville, PA
Shirley says
Hi Jodi–Welcome to gfe, and thank you so much for your kind words and heartfelt personal story. My sympathies on teenager issues, too. First, thank you for specifically sharing what you learned about skin care products and your rash. Not enough good advice has been given on this topic, even from medical experts. If one has gluten-related rashes and skin conditions, most notably dermatitis herpetiformis, one should definitely not be using products that contain gluten. Just recently a study showed that nobody who is gluten free should be using skin care products that contain gluten. Dove does not list any gluten ingredients, but as a product of Unilever it is not specifically tested for gluten. Of course, it has other ingredients that may cause irritation. Interesting on the success with Zest. I’m already a fan of Burt’s Bees.
I hope others will offer more input for your specific questions, but what you’ve shared is not that unusual. The way I see it is that our youth and acitivity can keep some of us surviving fairly well for a long time, but then our body just cries “uncle.” Gastroparesis is definitely related to celiac and is, of course, a serious issue and joint and muscle issues, even injuries like yours, can be related to celiac/gluten intolerance, too. It sounds like you may well have more going on, Jodi. Have your thyroid, D and B levels, etc. been checked? Deficiencies in all of those can cause/contribute to the symptoms you’ve cited. You need a good doctor who will test you for those and ensure you get meds/supplementation if needed. The difference can be HUGE when those levels are where they should be.
Hugs,
Shirley
Christine says
I’ve lived with a torn ACL and MCL for 32 years. It happened in 1980: A partially torn ACL and avulsion fracture of the MCL from the Femur. There was no arthroscopic or reconstructive methods back in the day. I had open knee surgery where they pinned the bone fragment with ligament attached back to the femur and sutured the torn portion of ACL (which doesn’t work). I was placed in a full leg cast for 10 weeks and endured some painful physical therapy for months afterwards. It took a year to walk without a limp.
I had an ACL single-bundle allograft almost 5 years ago after decades of living with my sloppy, weak joint. The last bit of ACL finally tore out tripping over the cat.
I had as more trouble finding an ortho that would do the surgery than anything I’ve done in life, including taking licensing boards. I went to 8 different doctors. The arrogance, misogyny and sense of entitlement to insult me was appalling.
It took a year and a half but I finally got the reconstruction only to have an incompetent PT cause a blood clot and land me in the hospital and anti-coagulant therapy for 5 months.
Here’s some things I learned the hard way and hope you can avoid.
1.The surgical adhesive that’s used for ortho applications is made from BEEF AND PORK PROTEINS. I could not determine via internet research if it contains gluten or grain proteins. Allergic red flags should have gone up but didn’t and this may have contributed the clot forming right near the surgical site.
2. I react BADLY to Warfarin and Heparin for the same reasons: pork protein allergy and nobody cross-checking the use of these proteins in synthesizing the drugs.
3. This adversely impaired my healing of connective tissues and bone. It also made all GI symptoms 100 times worse than my “gluten lite” lifestyle of the previous 3 decades.
4.ASK QUESTIONS ABOUT EVERYTHING they plan to use on, in, near your body during surgery. You can’t ask enough questions! Most staff, even then most experienced are CLUELESS when it comes to gluten/grains/legumes used in surgical and medical supplies.
5 Understand that surgery, no matter how “minor” is major to your body when you’re Celiac/NCGS. Don’t ever forget that and treat yourself with tender loving kindness at all times.
6. Even if your insurance doesn’t cover the passive motion device to keep your leg moving right after surgery GET ONE AND USE IT! You most likely will be given a femoral nerve block which makes your leg a useless 40 lb chunk of meat for the first 24-36 hours. It needs to move to pump fluids, blood, waste away from the surgical wound and you won’t be able to move it of your own accord.
I’ve been through 3 surgeries on my Left knee over the course of 32 years. The sloppy loose nature of the joint has damaged not only the ACL and MCL but the PCL, LCL, Patellar Tendon, Quad Tendon/muscle, Patellar cartilage and joint capsule. But according to the arrogant orthos, it’s just laziness and arthritis so tough it out until you’re old enough for a knee replacement. GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!
I get aerobic exercise in a pool. Period. I can’t risk the 50/50 possibility of torquing my knee and tearing the allograft by walking on uneven pavement. I do modified Yoga, Taiqi, Qigong in the safety of my home at my tolerance. I LOVE the Yoga in Bed DVD. Even as simple as it is it can be the difference between being mobile and suffering in pain.
Remember that CAM is about creating/restoring balance. Too often the term “boosting immunity” is misused. It really takes an expert’s knowledge about herbs when it comes to striking a balance. what is often touted as trendy is counter-productive for any given individual.
M C Robinett, DC, MSTCM, NMD
Dia says
My daughter has DH, which none of the docs she visited over the years saw as anything but ‘acne!’ … she gets her hair care etc products at a local beauty supply, & recently has found some labled GF at Grocery Outlet!
Her 7 year old gets a rash on her hands if she uses the wrong soap; the dad in another GF family loves soapmaking, so she has her own ‘stash’ of safe soap!
I had an ‘itchy scalp’ from teen years on, & when my daughter switched to GF skin/hair products awhile after going GF, I switched too …. viola! No more scabs on my scalp! (at 59!) … my daughter’s hubby breaks out when he gets dairy (he’s also GF) …. so that’s also something we avoid!
Shirley says
glutenfree–Thank you for sharing what you go through and your logic for going more traditional routes. None of us should have to justify what we find works for us, but I’m grateful you were willing to share. As has been stated in so many of these comments, we tend to beat ourselves up enough, so let’s not feel guilty when we figure out what works. Your comments will help many reading—thank you again. I do hope you get more inputs/solutions from others regarding the skin manifestations of being glutened. My son experiences them and they are very difficult.
Shirley
Amy says
I had such a bad rash in my face. They thought I had lupus.It was a butterfly rash but it was extremely visible on my right side..purple and red bumps that look like acne..horrific.. I tried every dermatologist ..Everyone kept saying something different. FINALLY I found a Dr that was sure it was a gluten allergy in skin ( which I’ve only had internally in my stomach) he thought in was minute’s of wheat from beer because the way it wasnt in full whole foodand strained and strained it was only influencing my skin. Anyway..come to find out he was right..After going through numerous creams we found one that made all of my rash go away in about one week and I use it every time I have a flare up..just a TINY bit goes a long way.(prescription).BRAND Fougera hydrocortisone cream 2.5% its a dry cream that drys up not the oily ones that always made my skin itch more. Whit and yellow tube
Gretchen @gfedge says
Typically it takes several days for me to realize I’ve been glutened so damage control is all I can manage. My DH issue always takes 5-6 weeks to clear up completely. All of the suggestions are good ones. I also focus on green veggies, pumpkin, coconut milk, chia, and only home prepared foods. Really weird – but clear nail polish reduces the burning, stinging itch quite a bit. It always helped with chiggers so why not?
Shirley says
Wow, Gretchen, how interesting on the foods that work for you (especially pumpkin and chia, although I know the general merits of both) and very interesting on the clear nail polish helping. Will pass that one on to my son and other friends.
Thanks so much for commenting!
Shirley
Dia says
I’m also a huge fan of coconut milk & chia! I make coconut milk kefir, & my normal brekkie is a Tbsp of chia soaked overnight (usually in herb tea), & mixed in the AM with the kefir & fresh fruit (right now berries!) …
I love pumpkin, too … my daughter has DH, & if she uses products that aren’t GF, she’ll get an outbreak (or if her beautician forgets to bring the GF conditioner she brings along …)
Amy says
All “Bamboo” products in salon are gluten free .Its made by “Alterna”..all their product are free of chemicals, sulfate free and gluten free..I use it at my salon.Otherwise I ich on my scalp
Jeannie says
While Alterna products are free of many of the known nasty chemicals ie parabens, phthalates, dea, etc they are not free of all chemicals. There are still some questionable ones in there among a very long list of ingredients. Chemically derived fragrance being one of them. The term fragrance is almost always a mixture of literally thousandths of chemicals, all undisclosed and hiding under the word ‘fragrance’
They do advertise their products as being gluten free though.
Shirley says
Thanks for this info, too, Jeannie. When we start reading ingredients, we learn much more about products than their gf status for sure.
Shirley
Amy says
I was mostly making a statement as to safe gluten free products and cancer causing ingredients and non sulfate for itchiness. Alterna product are basically made by hippies/green haircare kinds of people and very is green company..so they use as green as they can and as safe as they can; without product going bad..I’ve been doing hair 10 yrs and It seem to be the most natural and def one a few that doesn’t cause a gluten problem on my scalp.So if your gluten intolerant and your heads been itching..check into it..made a huge difference for me.
Shirley says
Amy–Thanks so much for adding that info for Jeannie and others!
Shirley
Shirley says
Amy–Thanks for sharing that info! 🙂
Shirley
glutenfree says
Hi Gretchen! Thanks for writing. I’ve never heard of using clear nail polish before, but it sounds very interesting. I use a variety of medicines, both OTC and prescription. Not ideal, but I haven’t been told what else to do to manage. The doctors and research I see all center around gluten digestive issues. Which I’ve got too, but the skin stuff is crazy worse than the stomach pain for me.
Leeann says
A temporary fix for my skin issues is to take a Benadryl. It clears the itching and rash right up. The only bad thing about it is the drowsiness that it causes. I also get dizziness with gluten and it helps that too.
Shirley says
Hi Leeann–Welcome to gfe. 🙂 Thanks so much for taking the time to leave a comment on this post. Sometimes temporary fixes are needed to get through challenging symptoms. I’m sure others will appreciate the info you’ve shared on what works for you!
Thanks again,
Shirley
Ricki says
Great, great advice. I eat gluten-free even though I don’t have celiac disease, and everything here also applies to me when I eat too many refined carbs, too many “sugary” foods (though I never touch actual sugar), or just too much food, period. This is great advice to detox and heal for anyone. Thanks, Shirley. And I think we could all remember to HONOR our bodies a little more!
Shirley says
Thanks, Ricki. It’s always wonderful to receive praise from you, dear. 🙂 And yes on HONORing our bodies and the issues mentioned being potentially more than gluten alone, as well as these detox suggestions working for all.
Shirley
Kathleen Conner says
**My NP gave me great advice. As soon as I realize I’ve have had some gluten, I take Pepto-bismol tablets, and Immodium A-D. She said that the Pepto coats the stomach, and the Immodium coats the intestines; the coating prevents some of the gluten from reaching the bloodstream.
My husband and I can both testify that this trick can be a lifesaver, especially when traveling. Maybe this will help someone else as much as it has helped us.
Shirley says
Thanks for sharing, Kathleen. I’m sure this info will help others, especially when they don’t want to let gluten “run its course.” I do take Immodium if needed on travel. Usually it works. Pepto-Bismol has almost no effect on me, but I’ve read that it helps others. At home I try to get gluten out of my system “immediately” by not taking anything (although in reality I know that even an accidental gluten ingestion can take many months to be resolved). ‘
Thanks again, Kathleen!
Shirley
Robert says
Thank you for this posting and all of the wonderful comments for different perspectives. I accidentally glutened myself 2 days ago — my symptoms have seemed relatively mild so far. I did choose to get some Gluten-Zyme(Country Life) and Digest Spectrum and I’ve been taking those since then. My reaction so far has been moderate — no flu-like symptoms like the last confirmed glutenation I got a couple of years ago. Mainly inflammation, puffiness in the face/sinuses and feeling irritable and occasional mild brain fog and skin dry/itchy — hard to be sure what’s primary and 2ndary since it’s been so long since the last time. I’m curious to see how things progress as I recover. I’m going to try out some version of the bone broth — sounds delicious any time! Blessings to you and all struggling with this — and a wish/hope for expanded awareness to avoid the hole in the sidewalk on every corner.
Shirley says
Hi Robert–Ah, that old “hole in the sidewalk on every corner” … that’s certainly an appropriate metaphor! I hope you have recovered from being glutened. Sometimes the recovery can be fairly swift … sometimes it can take days and all that, of course, just relates to the visible symptoms. I’m not familiar with either of those products, so thank you for mentioning them. I do know that Country Life products are certifed gluten free by the GFCO and I greatly appreciate that. 🙂
Thanks so much for taking the time to comment.
Shirley
Linda says
Great post Shirley! Thanks for putting this together. It’s a great resource for people
Shirley says
Hey Linda–Trying to catch up with my comments still … thank you so much! I am grateful for your input as well as so many others’. We are all creating this resource together! 🙂
Shirley
Maggie says
Wow, this is incredible. What a great idea, first of all! And to see it all here in writing is amazing. Thanks for organizing this Shirley. It’s an invaluable resource! I love how so much of it is the same 🙂 Although food makes us sick, it also allows us to heal. I love that people who have been betrayed by food are still finding ways to love it, and to be loved back by it. xoxox
Shirley says
Hey Maggie–Those are really great points! Jeff Bland says “The food of one can be the poison of another.” (or something similar). Learned that one from Ali and Tom, and it’s so true. We are all constantly learning what troubles our systems and what nourishes our systems. I, too, love the overlap here. Hope that many will benefit from this pool of tips. Thank you so much for sharing your family’s!
xo,
Shirley
Gluten Dude says
This is surely a page I will bookmark. My problem is that I never know when I get glutened, because it always seems to be a two day reaction. And by that time, I just accept my fate and know that I will have a hellish few weeks ahead of me (as will my family as I am NOT fun to be around when I get glutened).
I am not sold on the over the counter enzymes but am totally for holistic healing of any kind.
Shirley says
Hi Gluten Dude–Thanks so much for taking the time to comment. I’m usually more prompt on replying, so please forgive me. Many are in the same boat as you, waiting 48 hours (or at least 24 hours) for a reaction. That does make it extremely difficult to pinpoint causes. What you’ve alluded to is what many experience. So unpleasant for all involved.
There are definitely individuals in either camp (enzymes or holistic healing) and sometimes there’s crossover. We all have to do what we feel most comfortable with.
Thanks again,
Shirley
Katie says
Very interesting to read all of the different bodily reactions and great tips on how to get past them. I’ve only ever just waited it out, but next time I will try some of these tactics. Thanks!
Shirley says
Hi Katie–Thanks so much for taking the time to comment! I don’t want you to get glutened agan. Ever. But I hope if it happens, that you will be able to call upon these solutions. 🙂
Shirley
Beth says
Wow…I came to this web site because I am only a month gluten free and I have had some small moments of being “glutened” and wasn’t sure if what I was experiencing was actually from the small amount I ate. But this is so supportive. Just reading that others get that aweful fog and anxiety etc. really helps. Because I think even my family doesn’t understand that gluten has been the culprit of so many things that were stealing my quality of life. I am really thankful I found your little community here! I have been in need of support…I am 35 and this is all so new to me!
Shirley says
Hi Beth–Welcome to living gf and to gfe! 🙂 It’s common to be uncertain of one’s reactions early on. I’m so glad this is helpful to you. Families can get better with their understanding of your gluten issues over time, especially as you become more sensitive and they witness your obvious reactions firsthand. But I think it’s important to note that others who do not react to gluten the way we do cannot truly “get it.” If we hadn’t experienced all the symptoms ourselves, we really wouldn’t “get it” either. Know what I mean?
So glad you found us, too! FYI– I’m usually much better on replying to comments. A little inundated with commitments right now. I’ll do better. 😉 Hope to see you again, soon!
Shirley
Janice says
I do love ginger in any shape or form and green tea. 🙂 They are good for any accidental glutenings as well as lots of broths and rest. Thanks for starting this post! Life is about learning!
Shirley says
Hi again, Janice–All those treatment options make so much sense, and provide comfort, too. We often want/need comfort after a “gluten wallop.” Thank you for sharing them. It looks like you’re new to gfe–welcome! I appreciate your input very much. 🙂
Shirley
Amy Jane (Untangling Tales) says
Thanks for publishing this. I know I’m one of those who has tweeted in a panic. (Hmm maybe panic’s one of my allergen-overload symptoms…)
This is such a useful compilation. And it helps to see how others get knocked on their butts, too. Immature, I know, but still helpful.
Thanks everyone.
Shirley says
Hey Amy Jane–First, you’re very welcome. It’s a long overdue post. One thing stands out about the gf community … we need each other and folks are immensely supportive! It makes sense to pool what we’ve learned and share it. 🙂 Yes, I think you were one who reached out for help on Twitter, so I thank you for being part of my inspiration for this post! 🙂 And great point on panic perhaps being in that list of gluten reactions. I think you are right. If anxiety, depression, anger, etc. are “there”—and they certainly are—why not panic? I think panic makes sense even if it’s not a gluten reaction per se though, especially for the newly diagnosed. You start having symptoms and you’re not quite sure what you are in for, so you want to head it off ASAP. Of course, that holds true for many of us who have long been gluten free, too. We KNOW what we’re in for and it’s not pleasant. Last, I don’t think it’s immature at all to be somewhat comforted to know that others experience the same sorts of issues. Almost all of us have had our symptoms questioned for very long, so that often continues on once we’re gf.
Thanks so much for taking the time to comment, Amy Jane!
Shirley
Danielle says
Reading these posts makes me so emotional, but in a good way. I did not know that anxiety and being an emotional wreck was a symptom. I had no idea why I have been feeling so depressed lately. I was told I was Celiac 3 months ago. It has been an on-going battle since then. I was sick all the time, and it even started to affect my ability to do my job. Constant depression, anxiety, looking like i’m 6 months pregnant, migraines, constipation, vomiting. I was starting to think that no one even believed me, because it was so constant. It is slowly starting to get better, after three months of being gluten – free. But now i’ve come to realize that no one realizes how much this affects every aspect of your life. My family, my boss, my spouse and friends do not know how this has been so tough for me, my spouse has even called me lazy because i get home from work and fall to sleep on the couch. I don’t even have the energy to clean my house, or go out and socialize, i always feel so uncomfortable in my body. My question is even though I have been gluten-free for three months, with about 4 to 5 attacks since then, how long will it take for me to feel normal again? or how long does it take the body to heal initially? It will be a god send when the day comes that i do not feel bloated, irritated, and having headaches.
Thank you so much for this blog, Shirley. You and your followers are an inspiration.
Shirley says
Hi Danielle–It looks like this is your first time commenting–welcome. I’m so glad that you found this post helpful. It always helps to know that you are not alone, that others have been through the same thing … that you are not crazy. My situation was very similar to yours. I missed a lot of time from work before going gluten free and after going gluten free, I initially got worse, not better. Some folks do go through a gluten detox/withdrawal. It’s documented. Gluten has an opioid effect so for some, it can cause withdrawal. Just like with withdrawal from drugs, the person affected does not feel better at first. There’s a personal story here. I had to go on Family Medical of Leave Act. That allowed me to just leave when I needed to go home and crash. I had zero energy. I wanted to go to some support group meetings (this was well before I started my own group) and the group leader arranged for me to ride with another member, but I was not up to driving to her house even. I remember feeling better incremently … at 3 months (which you are–yay!), 6 months, etc. I felt tremendously better at the one year point. I felt best at 2 years. It takes time to heal. And one can need additional support. Sometimes the gluten-free diet alone does not resolves all symptoms, get one back on track. Sometimes there may be other intolerances (temporary or permanent). For example, many who can’t tolerate gluten, also can’t tolerate dairy, at least initially. Many alternative doctors who treat those with gluten issues also recommend going off dairy for at least 6 months until the gut heals significantly. Removing the dairy helps heal the gut. Then dairy can be reintroduced. Sometimes folks can tolerate it, sometimes not. I went dairy free, soy free, sugar free, and more for 6 months. That may not be necessary for you, but it’s a possibility. Usually some good supplements are needed to help the healing process, too. They can expedite healing. I took high quality supplements for months. I still take some because I (per some experts like Dr. Peter Green) don’t believe that most folks who are diagnosed as adutls heal completely, so additional support may always be needed. It’s also possible that there are other issues caused by celiac or related that also need attention (adrenal fatigue; thyroid issues, which are a common cause of fatigue; etc.). It’s critical to have an excellent doctor obviously. We can chat more offline, but you’re totally right that your spouse and other don’t get it. As you heal and they see you transformed, they are more likely to though. And please remember, Danielle, that even three months in, you’re likely still getting some gluten. We just don’t know enough at the beginning to be 100% gluten free. Happy to chat more w/thoughts and ideas. Just send me an email. Big hugs, Shirley
Emily Mayfield says
It amazes me how lucky I am that food enzymes work so well for me. I’m my gluten exposure is mild the enzymes will completely mask the symptoms. I don’t ever use that as a crutch, only as a remedy for accidents. I haven’t had a massive exposure in a long time, but I think the enzymes, coupled with lots of fluids, something bland to eat and rest is the best solution for me. I’m on vacation this week and having a hard time eating at all, and have had a few minor exposures and right now I’m fighting the symptoms that I always deny exist… exhaustion, depression, achiness, moodiness…. that coupled with the aching belly are enough to send me to bed!!! Thank goodness for soft hotel mattresses.
Shirley says
Hi Emily–It’s terrific that you’ve found that digestive enzymes are so effective for you. Are there any particular ones you recommend over others? I know that many reading are new to digestive enzymes and would appreciate some more input on them. I am so sorry that you got glutened on vacation, dear. It happens way too often to those of us who are gluten free. Thank you, too, for sharing that you also try to deny their existence and that you experience the same symptoms that so many go through. I hope you have recovered by now and that you managed to enjoy most of your vacation still. And on a somewhat lighter note one has to wonder about the wonder of hotel mattresses? It doesn’t seem like one can find those great mattresses when shopping for a home one!
Big hugs and many thanks for your input!
Shirley
Deb says
Thank you so much for this forum! I was misdiagnosed with Crohns Disease many years ago, even though my symptoms were atypical. My granddaughter convinced me to try going GF about 9 months ago, and the improvement in my GI tract is amazing. I feel like I’m getting my life back, and I now firmly believe that my mother suffered for years from gluten intolerance. I really appreciate hearing the experiences of others.
Shirley says
Hi Deb–Welcome! 🙂 Many thanks for the kind feedback and sharing your story with us. First, I appreciate you mentioning your misdiagnosis. That can certainly happen and some gluten-free medical advocates will say that all with Crohn’s can benefit from a gluten-free diet. I’m so, so happy that you are one who has had such success! Many thanks to your granddaughter for convincing you to go gf. I hope you’re able to share your success with others as so many with GI issues are getting their lives back by going gluten free. I’m so sorry your mother was one who suffered, too. I believe that most of us can look at our family tree and see the symptoms/conditions associated with celiac/gluten intolerance.
Thanks again, Deb!
Shirley
Linda says
I take ibuprofen and stick to liquids for 1-2 days.
Shirley says
Hi Linda–Thanks so much for taking the time to share what has worked for you. Sometimes an “all liquids diet” is indeed the best.
Shirley
peggy says
Natalie T,
I do sympathize with you – I have gluten intolerance (had is for at least 40 years – not diagnosed just struggling but have now been diagnosed by doctor about 5 years ago) and lactose intolerance (I knew about that but no one believed me!) (Can’t have soy either) and like you I have SVT (my count went up over 300 beats per minute – my now normal reading is resting 40 and sitting 50 moving about 60 (Unless I exercise) after visiting the hospital numerous times for monitoring and injections, I finally had a Radio Ablation and I have never looked back (perhaps you can investigate this).
My “being glutened(poisoned)” results in me projectile vomiting for about 6-9 hours and being really weak and shaky for days afterwards (even with ensuring I have plenty of fluids) I have a similar reaction though not as severe to being given dairy.
I found it very interesting to read everyone’s “methods” in overcoming glutened. Perhaps one or two may be adapted to my needs.
Thank you Shirley for starting this website – I am learning a great deal.
All the best everyone
Peggy in Queensland Australia
Shirley says
Hi Peggy–Welcome to gfe and thanks so much for sharing your story with Natalie and all of us! Everyone’s personal stories and gluten reactions are so compelling. None of us would wish for anyone else to have them, but it is validating to know that others go through the same thing. So many commonalities and yet so many differences as several of us have said. I hope that you will be able to successfully use some of the tips shared.
Many thanks for your kind words, Peggy!
Shirley
Ron says
this may not be very popular of an answer, but it Really works for me.
after having knee surgery I was taking percoset pain killers (tylenol with oxy codone).
After eating from the wrong plate at dinner, and knowing I was going to be paying for our for days, in desperation I took an allergy pill, a chewable imodium, and a percocet.
Logically, I decided, I would be treating my 3 biggest symptoms diarrhea pain inflammation.
IT WORKED GREAT for the immediate symptoms and the next day. unfortunately the next 2 days were still bad like usual but at least it is a way to reduce a lot of the suffering.
This works for me on a regular basis, and I would love to know if anyone else has tried it.
Shirley says
Hey Ron–I appreciate you taking the time to leave both comments. Percocet is a pretty serious drug and, of course, it requires a prescription. Not news to most for sure, but feel that it’s my duty to point that out. Anyone considering such a treatment plan should definitely pursue the course of action with his/her physician. Known problems with Percocet are folks “needing” it to get through (i.e, addiction) and constipation, the latter already being something that those of us who have celiac/gluten intolerance may have too much experience with. Combining drugs can also be a concern, so please check out your self-medication routine with your own health care professional. But thank you for sharing your thoughts with us.
Shirley
Bernice Kenney says
Hi Shirley,
I found this article to be very interesting and surely helpful.
I have been on a gluten-free diet for 30 yrs. as of Oct/2011. During the first year of my diet I purposely ate oatmeal since I had read a lot of articles by “doctors” saying it was gluten-free or that people with Celiac could tolerate it. Not me, I had a strong reaction and have never eaten anything since that I knew had gluten in it. However that doesn’t mean I haven’t had reactions over the years. I generally get glutened about once or twice a year or less. I am extremely careful and rarely eat out. My symptoms include extreme intestinal cramps followed by explosive diarrhoea which tend to last 3 1/2 to 4 hrs. Needless to say I don’t leave the bathroom at all and have severe nausea and feel like I might pass out. A hot shower is very soothing after and gets rid of the rivers of sweat caused by the cramps. I was diagnosed with DH (skin condition) as well and found that my symptoms disappeared after being on the gluten-free diet for several months. I will get some blisters if exposed to sun for too long. I never thought about cleansing my system to help the aftermath, fatigue, headaches, “brain fog”, moodiness etc. but I am certainly going to keep your article close by for the next time I am poisoned by gluten. I am very interested in the “Super Juice” you mentioned in your article. I am a care giver for a handicapped woman who also has Celiac and has been on the gluten-free diet for just a year. I feel this will be beneficial to both of us.
Thank you so much for sharing your experiences and remedies.
Bernice
Shirley says
Hi Bernice–Thank you so much for taking the time to share your personal story and how you recover after being glutened. Welcome to gfe, too. I think you have been on the gluten-free diet longer than anyone I personally know, so what you have learned is valuable info. Re: your early oats experience, while certified gf oats are available now and some can tolerate them, it seems that all of us learn which “expert” advice works for us or not the hard way. And wht a valuable resource you are for the lady in your care! No other caregiver would get her gluten-free needs the way you do.
Thanks again, Bernice.
Shirley
Shannon Brown says
I got glutened Sunday at a restaurant that had been safe in the past. Tuesday, I was reading the advice here and was happy to see massage mentioned. Last week, I’d made an appointment for the special treat of an hour-long massage on Wednesday. Only 10-15 minutes into it, I started feeling significantly better.
On a side note, I’m like some here. I learned I was gluten intolerant last summer (plus casein and soy.) I feel better in general now – no more stomach pain – but don’t have as much energy as I used to. It sounds like that that should improve in the future.
Shannon
Shirley says
Hi Shannon–First, let me extend an official welcome to gfe! 🙂 Congrats, too, on your new blog, Enjoying Gluten Free Life! I know we’ll all be looking forward to what you share there. And I know I owe you an email. Will try to get to it before the weekend is out. 😉
How wonderful that your pre-scheduled massage helped you out with being glutened! Anything that gets the toxins out safely does help significantly. And who doesn’t want justification for a massage on a regular basis to keep the toxins at bay? 😉
It does take time to heal from gluten, plus as several of us mentioned there’s the detox/withdrawal that goes on and can completely zap a person. But as I mentioned in replies to several, do be sure that your doctor checks your thyroid, B, D, calcium, etc. levels. Celiac/gluten intolerance is largely a condition of malabsorption and even after one goes gluten free, often times, meds are supplementation are needed. We all need and deserve as much energy as we’re supposed to have.
Best of luck, dear … on healing and your blog!
Shirley
Dana says
I was recently diagnosed with Hashimotos and put on a gf diet. Since my condition is auto-immune, I have to be careful about things that boost my immune system. I’m not sure if it would be safe for me to try some of the recovery remedies posted. Is anyone else gf because of hashis? I would love to hear what works for you.
Shirley says
Hi Dana–It looks like this is your first time commenting–welcome to gfe! 🙂 Since nobody with Hashimotos has weighed in yet, I’ll repost this link on my gfe FB page and see if we can get any answers. I would think that many of the solutions here could be used safely as they are non-invasive, simple, common sense remedies like rest, hydration, etc., but we’ll see what others offer up.
Shirley
PattyBoots says
I’ve been diagnosed with Hashi’s for over 10 years; it’s just another part of the auto-immune spectrum. Did just fine for years until I hit that dreaded … well, um, CHANGE. I do not have a definitive CD diagnosis, even with biopsy, but given family history and gene testing, at least a gluten sensitivity problem is practically a given. I’ve only been back strictly GF, including not kissing the hubs after he’s been drinking beer without a thorough teeth breeshing, since the last Tuesday in September, so I can’t speak to glutening. We RARELY eat out (and didn’t before, because of having worked food service and knowing what goes on in the back of the house) so the chance of being glutened is drastically reduced.
But I really can’t think of anything that anyone’s posted here that would be “counter” Hashi’s.
Christine says
I don’t have Hashimoto’s but I do have a benign adenoma that’s recently gone Hypo-functioning. Guess what! I was put on Levo-thyroxin and had an allergic reaction to the med! The only way for me to optimize thyroid function is through nutritional support of minerals, vitamins and anti-oxidants. One thing to watch out for is eating too much cruciferous vegetables. They’re goitrogenic (from Wikipedia as it’s concise):
Cruciferous vegetables can potentially be goitrogenic (inducing goiter formation). They contain enzymes that interfere with the formation of thyroid hormone.[2][3] Cooking for 30 minutes significantly reduces the amount of goitrogens and nitriles. At high intake of crucifers, the goitrogens inhibit the incorporation of iodine into thyroid hormone and also the transfer of iodine into milk by the mammary gland.[4]
The only other item I can find that’s specifically indicated is the use of iodine supplements for any thyroid condition. While hypo-thyroid would seem to indicate the need for iodine, if there’s problem with DH or sensitivity, it may no be tolerable for the patient. Of course with hyper-thyroid conditions this is contra-indicated and always refer to your treating doctor.
The any of us can do for auto-immune issues as well as allergic/intolerant conditions is eat a counter-inflammatory diet and live a counter-inflammatory lifestyle. After all, auto-immune disease, simply put, is the inflammatory response, a normally healthy response for healing, gone amok.
Shirley says
Hi PattyBoots–Thanks so much for taking the time to comment. I value your input from a Hashimoto’s standpoint and as someone who eats gluten free–whether officially diagnosed or not, or having long-term experience.
Thanks again!
Shirley
Joan Redeen says
This is my first time posting…my 20-year old son was diagnosed with Celiac two weeks before Thanksgiving in 2010 – so we’ve been GF for one year! I do have to say that I have found so many wonderful recipes on your posts! My son also has Down syndrome and an extremely high tolerance for pain…so I struggle with knowing if/when he is having a reaction to something he’s eaten. He also has Hirschprung’s which is a disease of the large intestine. And he was just diagnosed with Eosinophilic Esophagitis…essentially his entire digestive tract has been compromised for years! His reaction to most everything that bothered him for years was to throw things up, almost instantaneously. He would state that food was stuck in his chest and proceed to throw up – before going GF he threw up almost every day! Prior to his diagnosis with Celiac we had years of frustration as doctor after doctor told me his daily throwing up was simply behavioral! My response to his throwing up had been to stop feeding him that day as I didn’t want him to throw up again – but now that I’ve read several of these posts it has given me some good ideas about what to do to help him! Thankfully I’ve stayed on top of everything he eats so it’s a rare day in the past year that we’ve had a problem and he has gotten very good about asking if items have gluten in them and not eating them if he is told yes. I am VERY thankful for your recipes and the ease of them and I’m thankful for this post – I’ve learned a great deal in the past year but I’ve still so much to learn!
Shirley says
Hi Joan–Welcome to gfe and thanks so much for taking the time to comment and share your family’s story. I greatly appreciate your kind words on my recipes, too. 🙂 Your son and your family has been through so much. Truly, my heart goes out to you all. I know that many will read your son’s symptoms and recognize their own. Vomiting is not often recognized as a symptom of celiac, yet many of us experience it. Just yesterday a friend told me about a family member whose doctor said “well, vomiting is not really a symptom of celiac” when she suggested that celiac could be a factor in this person’s symptoms. You are really doing an amazing job already, Joan! But I do hope that some of these suggestions will be helpful to you and your son.
Thanks and hugs to you, dear!
Shirley
Christine says
One last post about DH. I’ve lived with it most of my life. It was misdiagnosed as a child to be acne but what 9 year old kid has acne? All the topical and oral medications made it worse and damaged my intestines.
Then it was eczema and again the meds didn’t work.
I’ve been treated for food allergies, Candida, Epstein-Barr Syndrome and a host of other rather non-sense diagnoses.
Until I heeded advice from my mother’s gastroenterologist about going gluten-free, I would have never figured out why I had a terrible blistering, herpetic rash on my scalp, ears and neck.
I took me realizing that shampoo, conditioner, shower gel, soap, anything that contacted my skin, not just that I ingested, was a problem. This is one topic where I have a real problem with the prevailing consensus on celiac.com and in light of the recent article mentioned above, I feel somewhat validated in having figured this out several years ago.
Conventional allopathic treatments don’t work for me. The only medications they have to offer contain ingredients that are known allergens or cause me what’s known as “paradoxical reactions”, ie, make things A LOT WORSE, rather than better.
For me, being vigilant about being CC’ed, glutened, whatever you want to call it with topical exposure as well as ingestion is paramount. No using soaps in public bathrooms, etc. I wash with water only, then use non-alcohol herbal hand sanitizer or wipes I carry. I don’t share anything with anybody, except my spouse, who’s as vigilant as I am for his own health.
We have a gluten, grain, legume, SOY, chemical free household for both of us and all the pets.
Kay says
Day two after being glutened. I wasn’t as bad off on day one as I am today. I should have rested more yesterday, I suppose. Drank lots of liquids, but should have probably stuck with those instead of trying to eat. Hopefully tomorrow will be better. Today’s plan is to take it easy, try to take a walk in the sunshine, and drink lots of water. I think I’ll try some pineapple juice, too. I hadn’t heard of that trick.
Shirley says
Hi Kay–First, thanks for being a new reader of gfe, and for taking the time to share your experience and remedies. I’m so sorry that you were glutened though. Hope your day went better after following your plans. I did eat both watermelon and pineapple after being glutened last month and I really did find it helpful. I had heard of pineapple, but not watermelon before compiling this post. That’s a suggestion I’m happy to take any time, but especially when it works. 🙂
All the best,
Shirley
Mary says
What a wonderful post, Shirley…first chance to read through this morning and so glad I did!
Whenever I’m glutened I usually drink ginger tea, make a broth soup, and just wait it out. I’m affected for days which is why I’m so hesitant to ‘chance’ anything. Bloated, aching all over, brain fog, heartburn, and headaches are my strongest symptoms and it makes for a pretty miserable few days.
While traveling this summer, friends were surprised that I was never ‘tempted’ to order something that ‘seemed’ to be gluten free. I just wouldn’t take that chance. And it’s funny, why would I be ‘tempted’ to ingest something my body cannot tolerate?
The next time gluten sneaks it’s way into something I eat (and we know it’s inevitable), I will try some of the remedies mentioned here, watermelon sounds like one of the best (yum!)
You do such good work, Shirley! Thank you,
Mary
Shirley says
Hi Mary–I can’t tell you how much I (and I’m sure many others!) appreciate you taking the time to share your own recovery plan, as well as your reactions and commitment to staying 100% gf.
LOL on the watermelon, but I actually had the misfortune (too many gluten incidents on travel of late) to try it and I do believe that and the pineapple I ate at the same time helped me feel much better. It’s definitely a solution that I can endorse. 🙂
Many thanks for your kind words in closing, Mary! Hugs,
Shirley
Alta says
Shirley, I just realized I never commented on this post. I was reading through all of the comments today and thought “wow, what a helpful post” not just because of the content, but the discussion it inspired! So many ways that gluten can affect us, so many ways we can heal! Thanks so much for taking the time to put this together, and for taking the time to respond to each of your commenters. You are a gem in the gluten-free world.
Shirley says
Hi Alta–I’m quite a bit late in replying to your comment myself, so no worries on the delay at all. I am glad you got to comment though and your inputs to the post are very valuable. I’m sure you could see many folks identifying with the way you second guessed yourself. The discussion that this post (and even comments here on the post) has inspired really has been helpful to all of us. Last, you are too kind, but thank you!
Hugs,
Shirley
AmandaonMaui says
One of the best beverages to rehydrate me after being glutened is fresh young coconut water. If I can’t get fresh I’ll go for readymade in either can or aseptic cartons. It’s got a little bit of electrolytes to replace some of what is being lost due to diarrhea, or vomiting (not an issue of mine, but heard some people go through it).
I also have liked kombucha to replace the good belly bacteria, as well as probiotic capsules to help the flora in my intestines.
There’s not really something I can do for the brain fog other than just give myself the permission to go slower in my day. If the glutting is really bad I may even take a nap.
Thankfully my boyfriend is so supportive. He takes such good care of me when the gluten is bad. Thankfully I haven’t had that bad of a reaction in a while. While every reaction is bad, some are nearly debilitating.
The best advice I can offer is the old way of treating a cold. Fluids, simple food and rest.
Shirley says
Hi Amanda–Thanks so much for sharing what works for you! That makes perfect sense. I love coconut water and other light healing juices. I just got glutened again (from a “gf” product) and pineapple juice and coconut water have really helped me. I know that many swear by kombucha all the time, but especially after getting glutened.
The brain fog bothers me more than the other symptoms. It’s like being in a deep well in one’s own head I think. I was so glad when the brain fog mostly lifted from this last glutening. Thankfully, this experience was not as bad as many. I am pretty sure that’s because I realized after a few bites that there was gluten in the dish, so my exposure was somewhat limited. But you’re right that sometimes being glutened is totally debilitating … those can be rough days.
Thank goodness for supportive partners, family members, and friends. Thanks so much for sharing, Amanda, and nice job on summarizing the bottom line of what we need to recover!
Shirley
peggy says
Shirley, and all you helpful GFE’s,
I am learning so very much – and as I read I realized that I cannot tolerate iodine (naturally occuring iodine seems to be ok – just the “processed sort) and it seems it is all connected.
I am also “Chemical Sensitive” (allergic to petrochemicals and many “sprays including and especially Aerogard and all those ‘body insect sprays and roll ons”. – They give me an anaphylactic shock and I collapse – no heartbeat, no breathing – zip and I must be resuscitated and given oxygen) the same as beestings (some ants and wasps too although so far I have not collapsed from these but become very ill and unconscious and when I come to very sick for two to three weeks just from the venom) so together with my gluten intolerance/lactose intolerance/soy intolerance and I cannot drink water with fluoride, chloride etc in it either.
John (my DH and carer I cannot go anywhere unless he accompanies me due to the likelihood of being sprayed and we carry a bottle of oxygen with us)
manage these challenges pretty well but I find that it is very difficult to field those comments about my being difficult and I should just pull myself together and not be such a drama queen(or wanting to be the centre of attention – as if I’d want anyone to watch me being violently ill duh)
Knowing of my intolerances and allergies, John and I have been invited to various people’s homes for a coffee and then coffee and cake is provided but I just get an offhand “Oh, there’s nothing for you” even though we bring water which is ignored (but to bring something to eat is considered an insult to the host/hostess”.
Any suggestions as to deal with this sort of “Intolerance of a different kind”??
I am often just too stunned to think of anything (polite) to say(so just say nothing in a stunned sort of way) and John often finds these things under “the radar being in female speak” to notice and act on.”
I would dearly love to know how other people who have similar problems to me, deal with these comments and attitudes (which sadly includes family and friends) and any tips they may have.
I find that these attitudes stress me out more than actually having to deal with avoiding gluten etc.
Many thanks in advance and hoping for some tips,
Cheers Peggy
Shirley says
Hi again, Peggy–Thanks for sharing such a thoughtful comment in response to reading all the new comments. I’m sorry that you have been through so much and have to suffer others’ intolerance (a totally different kind of intolerance obviously!). I’m sure you know you are not alone in dealing with this issue. I went to a family event at my MIL’s recently. All that was safe for me to eat was water and potato chips. I just drank the water. I had eaten before I left home because I expected it. It’s very hard to understand folks who make no effort at all. It is truly unacceptable. That whole golden rule thing, you know? But I’ve learned that this is the way it is. My own family is always looking out for me, but other family members are pretty clueless and really not intersted in learning. My close friends are very caring and some can feed me safely. A few others who are not close friends don’t look out for me. I don’t really consider those who don’t support us to be friends. It’s one thing to be ignorant of what gluten free means, but I agree that it’s another to be uncaring and disrespecful of those with gluten and other food issues. I’ve actually started posts on this topic a few times, but have not finished them. Maybe it’s time, huh? I have many thoughts on the topic, so I’m sure we’d have lots of discussion.
Re: chemical sensitivities, I don’t have any of the severity you do (and I extend my sympathies on those … very, very scary), but I am very sensitive. I walk into those gift stores full of candles and such and turn around and walk right out. If there’s painting or anything occurring at work, I have to leave. One girlfriend gave me a candle for Christmas one year and I couldn’t even have it in my car long enough to take it home and give it away. (I always put these types of gifts outside on our porch before I give them to charity.) But that time, I immediately went to the store and returned it so I could breathe on the way home and not feel light headed or have a raging headache.
Thanks again, Peggy.
Shirley
Lauren says
Just in case anyone out there is in the same boat as I am…
My acupuncturist suggested that I had a food allergy based on some symptoms I was having. One of the main symptoms was a phlegm problem. I was having excessive phlegm every day. I also had really bad stomach pain almost after every meal, and that pain would last anywhere from 30 mins to the rest of the day. I would even sometimes get up in the morning and the pain was still there. I would just have to massage my belly and hope that I could get on with my day. I always thought maybe I was overeating all the time or this was just something I would have to deal with forever. I never thought it was a gluten issue.
At the advice of my acupuncturist, I did some research and the one common allergy that produces excess phlegm was gluten. The other is dairy, but I am vegan so I don’t get enough dairy to have an on-going daily problem.
I gave up gluten for about four months. I avoided it at all costs, ate mainly at home, avoided foods that might be contaminated or have hidden gluten. I noticed that I felt a lot better, the phlegm issues went away, my tummy never hurt anymore, and I also noticed that my skin cleared up, even the little bumps on my legs smoothed out.
For whatever reason, I decided that I would try to have gluten and see what happened. I had some pizza. I had no immediate reaction. I felt completely fine the next day. And the next day. I started to think that maybe it was something else other than gluten. I thought that maybe the whole time I was avoiding gluten I was also eating a lot less sugar. Then I started to think that maybe it was sugar. (Also – I don’t have insurance and there is no way I can afford an allergy test! So this is how I go about it!) I continued to eat wheat about once/day for about 10 days or so. I would eat wheat toast, pizza, whole wheat pasta, wheat tortillas for my burritos, etc. I guess in the back of my mind I was kind of doing an experiment. I went on to feel totally fine for about two weeks. Totally fine.
A couple of days ago I ate lunch: black beans, corn tortilla, romaine salad with balsamic dressing. Very simple and bland lunch. I immediately felt sick to my stomach after eating. It was painful. The rest of the day it hurt so bad I couldn’t even imagine eating dinner, it just hurt. Really bad gas pain sort of feeling accompanied by nausea. I woke up in the middle of the night in really severe pain, I thought I might have to go to the doctor. I thought I was having appendicitis or something like that. I cried it out and tried to stay calm. I was able to fall back asleep and in the morning I felt about 90% better. The nausea was hanging on just a little bit.
That day I still didn’t have much of an appetite and in the afternoon the tummy pain started to come back. And it’s been about three days now and basically I’m feeling nauseous, like I might throw up, bloating, stomach pain, very unmotivated, not even motivated enough to watch tv, I feel like I can’t focus, and someone above described the feeling like a hundred elephants has trampled over your tummy = exactly! And I haven’t been able to eat much. I don’t have an appetite and nothing sounds good to me. Also I am having achy body pains. It’s a really horrible feeling.
I’ve been allowing myself to be lazy, a little anxious, and I’ve been drinking tea and water.
I just wanted to post this for people out there who may be trying to self diagnose their allergy. If you are feeling better from not having wheat and you want to see what wheat does to you – take it slow! Just have a little bit and then give it a few days. I think that some people don’t have reactions for a couple days or so. Unlike some other allergies, you may not have an immediate reaction. I overdid it and now I am really paying for it. I am completely miserable.
After this I am convinced that I have an allergy or intolerance and I will not being going back to wheat again. Not worth it!
Good luck everyone! And thanks for sharing all of this advice – it’s all really helpful!
Shirley says
Hi Lauren–It looks like you are new here–welcome to gfe! 🙂 Thanks so much for being willing to share your story, as painful as it is. And all of us reading definitely understand how painful it is … literally and figuratively. First, most of us never think our issues are gluten either. And those of us who try to be “food detectives” actually do the same type of reasoning that you did, and it simply doesn’t work. There’s almost never an immediate “cause and effect” with foods and symptoms (other than anaphylactic reactions) because the foods are still in our system and there’s an underlying level of unwellness so to speak. That’s why so many alternative practictioners recommend an elimination diet. It’s only after foods are removed for a good while and slowly re-introduced that you can see clearly that you’re reacting to them. Back in the day, I guessed lots of stuff were bothering me other than gluten. The lack of a clear reaction for most (under normal circumstances) is also why I recommend testing for validation. Celiac testing is still largely inaccurate/expensive/invasive, so I recommend the Enerolab Gluten Sensitivity Stool Test. It’s controversial, but has helped thousands and thousands, and without a doubt saved lives. (I have no affiliation; I’m just a fan.) It sounds like you have your clear answer and will be “good to go” from now on, but did want to mention that info for other readers. Thank you so very, very much for being willing to share your story so openly like this, Lauren! You have helped so many. 🙂 Last, I truly hope you are feeling better now and some of these solutions were helfpul.
Hugs,
Shirley
Fi says
Hi
I have been gluten/lactose free(as best possible) for about 10 yrs now. Very trying at times, especially when it comes to
Eating out but can normally keep attacks under control with
Peppermint capsuals, activated charcoal, camomile tea, peppermint tea, fresh coconut, limiting sugar, too much yeast & certain fruits. As well as this I have to avoid certain alcohols (except champagne Moët!) which bizarrely cures my bloated stomach! And VINEGAR!! which gives me worst symptoms of ALL! Inflammation, loss of appetite, Foggy thinking, anxiety, fatigue, depression, achy!! It’s can be hard to avoid when eating out as it’s in lots of dressings, sauces & such but it’s worth avoiding for me with it’s adverse reaction than can lasts
About two weeks! 🙁
Shirley says
Hi Fi–First, welcome to gfe. 🙂 Thanks so much for sharing your experience and tips with us all. I think it’s really helpful to hear that we’re not alone. Best wishes for us all staying 100% gluten free in the future. That’s all our desire, of course, but as you said, we know how challenging it can be. I just hope it keeps getting easier and easier to eat out, share meals with friends, etc., all the while staying safe.
Shirley
Karen says
Dear Shirley, Thank you for this post. I can’t tell you how nice it was to read through other peoples symptoms and healing remedies. So validating to find many of the ones we have tried among them and exciting to find new ones that I hadn’t thought of! It’s funny with five of us with gluten intolerance or celiac we all react differently and depending on how badly we are glutened recover in different ways. It’s no wonder my brain gets overloaded just trying to manage the mystery of it all.
This post was a lovely reminder for me that I, and my family, are not in this alone and there are so many other fabulous folks unraveling the same puzzle in their own lives. With our recent move to Sweden I am surrounded by new ingredients, different foods, and needing iTranslate to read labels. It feels like we are back at the early diagnosis stage. I have to laugh, because really, how many times am I going to need to relearn how to make pancakes 🙂
Thanks for all the good stuff, and GF love you share!
Best Regards.
Karen
Shirley says
Hi Karen–First, my sincere apologies for taking so long to reply … I and some of the comments on gfe are “getting lost” with all the hubbub of our Home for the Holidays … Gluten-Free Style event. Thank you so much for taking the time to leave a comment sharing your thoughts. Yes, we all can read this post with so many bloggers’ input and the comments from readers and feel “validated.” Validation is very important in living gluten free as we often feel so alone in our quest to stay gluten free and healthy. My hat goes off to you in a very big way on living gluten free in a country where you don’t speak the language. What an extreme challenge! I took a look at some of your recent posts on your blog, saw those labels on food items that you’d photographed and thought, wow, how does she do it? And I guess if you have to re-learn to make something, pancakes would be top of the list for many! 😉 Keep your sense of humor!
Many thanks for your kind words, dear! All the best to you on living gluten free and well in Sweden (or wherever your future travels take you). 🙂 Hugs,
Shirley
Lindsay says
Hi all-
I am very new to this and I am not sure if this comment will get lost in translation since I am about two months behind, however I thought that I would try.
I am a diagnosed Hashimoto’s patient who has struggled with having normal TSH levels(after medication)but persistent symptoms for 2 years.
Upon doing research on GF I have finally gotten tested for Celiacs/Gluten Intolerance (waiting on the results).
My symptoms are debilitating fatigue, brain fog, muscle weakness, anxiety, bloating and constipation (did I mention pure exhaustion?).
I started a GF diet about two weeks ago just to be proactive. I wouldn’t say that I was feeling “good” but I will say that the AWFUL days I sometimes get were not present. After 2 weeks of strict GF I decided to reintroduce it in my diet to see if I had any changes. Needless to say, I ate gluten on Sunday and by Monday I felt like a train had hit me.
The AWFUL fatigue is back with full force, as well as my anxiety. As I wait for my results, I wanted to know if anyone could offer me an insight as to whether or not this seems typical in a GI person?
I am 25, married with an 18 month old daughter, AND a full time teacher. All I want to do is lie my head down and sleep, but unfortunately my life never stops.
I immediately got back on my gf diet, but it is still wreaking havoc on my body. Is this enough to prove that I am having problems with gluten, regardless of the test results?
Thank you,
SunnyB @ andloveittoo says
Lindsay,
Yes! This is enough to prove that you are having problems with gluten, regardless of any test results. Trust your gut (pun intended), our bodies tell us more than our Dr’s could ever know…when we tune in and listen to what it’s saying, we benefit far more than we could ever imagine.
xoxo
SunnyB
http://www.andloveittoo.com
Shirley says
Hi Lindsay–First, I’m so thankful to Sunny for replying to you. I don’t remember what I was doing on Feb. 8, but I’ve found several comments from that day that I missed and did not reply to. I’m so very sorry!!! I totally agree with Sunny. You already have more powerful proof than any traditional test will give you. I still am interested in what your results showed though. When those of us with gluten issues (from non-celiac gluten sensitivity to celiac) are eating gluten on a daily basis, most of us have a constant level of unwellness, with some awful days in the mix. Still, we just don’t know that gluten is the factor. When we take out the gluten for even a short time and then have some again—on purpose or accidentally–it can hit us with amazing force. Think of it as our bodies screaming at us to let us know how much gluten is affecting us.
Sine you left your comment a while ago, I’m hoping that you are still gluten free and feeling better. Some folks feel better almost immediately, but for others of us, it takes longer for us to see improvements in our health. Some of us, like myself, go through a detox period when gluten is removed and find ourselves feeling better in increments, such as months and quarters versus days. Those periods can seem very long, but I remember noticing improvements at 3 mos, 6 mos, and so on. Often, I would already be taking the absense of an old symptom for granted before I realized that it was gone. For example, at 6 mos, I suddenly realized that I was running up and down my stairs … those same stairs that I’d avoided before because of debilitating knee pain. Knee pain so bad that I would take one step at a time very slowly, when I did use the stairs. For those of us who have gluten issues, its removal from our diet can be nothing less than life changing.
I hope to hear back from you on how you’re doing. Again, I sincerely apologize for not replying sooner. Hugs to you, dear!
Shirley
SunnyB @ andloveittoo says
I was glutenized just last week, the first time in over a year. Felt like food poisining, but after finding the wheat noodle in middle of my already half-eaten plate, I knew I was in trouble. Thank goodness for a community like this, I would be so lost without the knowledge and experience found in posts like this.
xoxo
Sunny
Shirley says
Hey Sunny–I’m so sorry that you were glutened/glutenized, dear. Getting glutened packs a wallop for sure. 🙁 Yes, it can feel like food poisoning, the flu, a bad virus, etc. I’m not even sure that everyone recognizes when they’ve been glutened. I think that many will say they’re “under the weather,” “had a bad bug,” etc. when they’ve really been glutened. I think some folks are getting small amounts of gluten on a daily basis through products that aren’t really gf, so when they do get gluten, they can’t always tell. Anyway, that’s a post for another day. I’ve been using some of the hints in this post and comments when I’ve gotten glutened and they have really helped. For me, getting glutened happens a few times a year it seems, no matter how careful I am. 🙁
Last, thank you so much for replying to Lindsay in my absence/oversight! Your comment was perfect, because we do indeed know our bodies better than our doctors ever could. We shouldn’t give our “power” away to doctors who are largely clueless about gluten’s full range of effects and, therefore, not knowledgeable enough to advise many to eliminate gluten.
xoxo,
Shirley
kimmipeach says
Shirley, first let me say a HUGE thank you for your blog and, more specifically, this post. I’ve been stumbling down the GF path for 2 years now, and am awed and humbled to see how much I still don’t know.
A dear friend heard of the symptoms from GI/Celiac and realized that it sounded like what my sister and I went through on a very regular basis. Sis and I went GF for a couple of months to see what would happen. OMGosh!!!! It was astounding how much better we felt. We’ve talked several times since then about how we didn’t realize how bad we truly felt until we started to feel good. It wasn’t just an absence of pain, etc. It was truly feeling GOOD for the first time we could remember.
Not having been sick very often, my hubby thought it was crazy at first, until he saw how much better I was in every way. Now, he’s very understanding, sympathetic, and helpful when I get glutened. Before, he was sure that I just took time off from my responsibilities because I wanted. (Crazy man!) lol
My symptoms are intestinal, as well as skin issues, cramping, joint pain, headache, etc. I can tell with a bite or two if something has gluten. It feels like the bite is just sitting at the back of my throat, wanting to come back out. That’s the best way I know to describe it. I know it sounds odd, but there you go.
I have often wondered if there was more that I could do after being glutened. I will absolutely be trying some of these suggestions.
After checking with our doctors, I have added kefir water to the daily regimen of me and my son. (My son struggles with an auto-immune issue that has resulted in several bouts of Stevens-Johnson Syndrome and the resulting stays in hospital.) The water kefir is reputed to have an immune-boosting effect, as well as containing loads of vitamins, minerals, and good-for-your-tummy bacteria and yeast. I use the kefir to make a tea infusion (i.e. cold-brewed tea), and it’s awesome!
Shirley says
Hi kimmipeach–First, I’m so sorry that it’s taken me so long to reply. Second, I’m so glad that this post was so helpful to you. Thank you so much for taking the time to comment and share your story! More and more folks are self diagnosing or listening to a good friend and finally finding out the impact that gluten has on them. I complete understand what you mean about not knowing how bad you felt before, your husband being a bit uncertain at first, but then seeing the impact, and that “knowing” within a bit or two. On the latter, I have that same experience, even vomiting immediately in some cases. While vomiting is not desired, it dos help to eliminate that gluten. Is your son gluten free as well? I know nothing about Stevens-Johnson Syndrome are any links to celiac/non-celiac gluten sensitivity, but know that so many of those with other conditions benefit from a gluten-free diet, so I’m curious. My friend Kim at Cook IT Allergy Free shared the benefits of water kefir a while back, so I know you are doing a great thing for both of you. 🙂
Best to you both and glad to give you some new strategies for recovering from being “glutened.” (Unless we live in a bubble, it does tend to happen much more often than we’d like.)
Shirley
Sheryl says
Thank you all for your sharings. I have considered myself gluten free for years but today am realizing that since I have been feeling sick and low since Easter that I must have been glutened (love that term) and also reacting to other foods so I will go for bland foods again. While reading your notes, I took notes. Thank you!
Shirley says
Hi Sheryl–Welcome to gfe! I’m sorry to just now be replying to you. I’m also so sorry that you’ve been having issues since Easter, but glad that this post helped you figure out the “why.” As I like to tell folks, gluten doesn’t cause every problem, but if we’re having issues, gluten should be the first suspect on the list. However, I wouldn’t say that one has to go to bland foods to stay safe. There are so many flavorful ways to eat simply, naturally, and safely gluten free. Look to spices and herbs; simple marinades made from olive oil, gluten free soy sauce, lemon or lime juices, salt, and pepper; fresh and vibrant real food; etc.
Again, I’m so happy that you found this post helfpul! That you took notes is quite the compliment to me and all the others who had input. 🙂
Shirley
Courtney says
OMG I am in total Gluten denial. I have been gluten free for 3 months. My son has celiacs as well as my cousin. I have major depression issues and anxiety that caused me to be medicated. Since going gluten free they both have been relieved. BUT…this morning I could NOT resist a jelly filled donut. Within 30 minutes i was puking violently. Had a panick attack and have been to the toilet 17 times while working a 16 hour shift. WHY did I do this to myself. I’m just HUNGRY for the good stuff. I have and cook many wonderful gluten free things. But, sometimes you just want to cheat. CHEAT NO MORE!!! I am going to use some of the “healing” comments here to get back on track since I am new to this stuff. Off to the health food store for some good remedies. Thanks everyone.
Shirley says
Hi Courtney–I’m just now realizing that I have not replied to the latest comments on this post. I’m so sorry! I truly hope you are staying cheat-free and thriving since you posted this comment.
Courage, strength, and healing to you!
Shirley
Felicia says
Ive just remembered what works for me, after reading all of your posts, after years of being treated for GERD, i first eliminated dairy(half the battle and seven months ago, wheat.I was glutened 4 days ago, and look 8 months preganat. It was self inflicted, but I usually never had a reaction to it. For my 25th birthday, I ate a poptart. Oh my. But I remember I healed extremely following the blood type diet. I specifically only ate the foods with medicinal effect. I healed very quickly. Not lack of symptoms, but healed. I am blood type o, I ate blueberry( organic whole and in smoothies), plums, broccoli, stewed beef, drank Fiji water, ate apples. I am eating a plum as I type(bought some today without even realizing why I craved them). I have more energy already. I find food does better then any vitamins or supplements.
Shirley says
Hi Felicia–As I was just saying, I missed these latest comments on this post. I’m sorry. Thanks so much for sharing your experience. We often don’t realize how severe our reaction to gluten is until we’ve been off it for a long time. Or we might be going along seemingly fairly well eating gluten because we’re at a constant level of unwellness and don’t realize it. Even though it’s a constant level of unwellness, it may be a manageable one. When we take gluten out of our diets for a long time and reintroduce it, our bodies can make our intolerance very well known. Detoxifying/healing food can be such a wonderful way to get our bodies back to a functional state. Thanks, too, for sharing your success with acupuncture, herbs, and Chinese medicine! I’m so glad you’re all recovered now!
Shirley
Thomas N. says
I’ve been gluten free since 2008. I have gotten very proficient in staying clean, but I had a major slipup recently that was devastating (ate a muffin I thought was GF). It made me feel like I was on drugs.
Oddly enough, I found strong, black coffee pulls me out of my brain fog for a few hours and allows me to re-engage with my surroundings. It helps to add an espresso shot or two. However, the moment the coffee wears off after 2-3 hours, I plunge back into a brain fog and have to get more. Maybe the enzymes and caffeine in it help suppress the gluten reactions? I also find if I down coffee immediately after getting glutened, I don’t get hit as hard.
Shirley says
Hi Thomas–Welcome to gfe. Thank you so much for sharing your experience and what helps you recover from being glutened. It is often the foods that we think are safe that blindside us, and so clearly remind us how badly gluten affects us. I’m sure that the coffee lovers will be wanting to give your method a try. I wonder if it is the caffeine as you suspect. I know that caffeine is sometimes used to treat headaches. Coffee does have other beneficial properties. Others have mentioned hot tea as one of their treatments, both caffeinated and non-caffeinated. It’s clear from all the comments here that we do all respond to different treatment options; thanks again for sharing what works for you!
Shirley
Felicia says
Update : I had to go to my accupuncturist and accupunture under heat lamps and some herbs.immediate relief. Worked like a charm:) I’m great now. Like it never happened. She’s a physician that practices Chinese herbal medication, natural health.
Dia says
This is a wonderful post!
A friend on ‘celiac, gluten intolerant (or parents of them) on FB was glutened tonight, & asking for suggestions – found this to share with her!!
I am also a fan of Epsom Salt baths (love your frequent reminder to STAY HYDRATED), & as a massage therapist, recommend them to clients with a lot of tension! I’ve been GF 3 years, & really relate to your comment that when we’re glutened, brain fog increases, & we forget what to do! So true. I don’t have ‘classic gut’ symptoms, but sure get the brain fog, hungry, sleepy …
I have kefir daily, & take a fistfull of supplements. I carry digestive enzymes in my purse, (PURE Encapsulations) & usually take one when I eat out, just in case.
I also drink vinegar in water, & sometimes take homeopathic gelsemium or occilococcinum, if I think I’ve gotten some gluten. Ditto on charcoal capsules. Ginger & yarrow are two of the herbs I use for general healing & digestion. Also ‘bitter’ herbs. I’m making some tinctures this summer, & researching a good ‘bitters’ combo. I was given a start of Japanese mugwort (Yomogi), & want to include that, dandelion, yarrow & moterwort.
I also keep slippery elm on hand, & have used that for myself or my grandkids, when it’s hard to keep other things down (the NA used it as a famine food!)
I like your one word summary – HONOR!!
Thank you
Shirley says
Hi Dia–Thanks for all the great feedback and listing your own means for recovering, healing, and general wellness. I am so glad that you found many of the tips shared in agreement with your practices and I appreciate you sharing this post with your friend, too. 🙂 Also, thanks for replying to Gretchen and Jodi.
Yes, HONOR our bodies … every day, of course, but especially when recovering from being glutened!
Shirley
Chickiepea says
I admit that I did not read every single comment, but what works best for me is alternating activated charcoal tablets with “e3 LIVE” brand enzymes every few hours, rest, and lots of purified water or coconut water.
Shirley says
Hi Chickiepea–It’s great to see you here at gfe again. 🙂 Many thanks for sharing your best tips for recovering. I know that lots of folks do use the activated charcoal tablets, but it’s interesting that you alternate them with your favorite enzymes. I’ll be checking those enzymes out. Thanks again!
Shirley
Cat says
Thank you for the list and I will go back and continue reading the comments too!
I have been miserable for the last SIX days after being glutened. I think the persistent pain of bloating and mad tummy are due to not eating a bland diet. I tested negative for celiacs, but started the GF diet several months ago. I was not as dedicated as I should have been and this last weekend ate regular pasta. Boy, my denial of what was wrong (gluten intolerance)was quickly gone.
I have now been suffering through the week waiting to feel better. I wake up each morning with a happy stomach, no bloating, but once I’ve eaten something, the mad tummy is back. I will be diligent with a bland GF diet until I feel better. I also noticed when I first went GF that if I cut out dairy, I felt better. Once my tummy was happy, I could introduce it again in small quantities.
For someone who has never had food allergies, this is just an eye opener on so many levels. Thank you for your website. I look forward to learning more and putting it into practice!
Shirley says
Hi Cat–Welcome to gfe. 🙂 I’m sorry you’ve been ill, but glad that you’ve seen the devastating effects of gluten on your body and have recommitted to living gluten free. Please take a look at my Getting Started with GFE page that has printable tip sheets to help you shift your mindset to living gfe. Living gfe means focusing on real food that’s naturally gluten free (and recipes made from real, naturally gf food) first and foremost, some safe mainstream gf foods, and just a few gf specialty items. Following this approach keeps one healthier, keeps life easier, and makes living gluten free no more expensive than a gluten-full diet.
It’s pretty common for folks who have gluten issues to also have dairy issues and other food intolerances, at least initially. The gut is compromised and until it heals, many foods will cause issues, but dairy especially is known to be secondary problem. Sometimes if dairy is removed, the gut does better with it as you discovered. But the gut might not be healed or one may also have an irreversible dairy issue. I’ve been in the same boat with dairy. As much as I hate to admit it, I have the same issues with dairy. I’ve gone the start and stop testing many times and everything indicates I need to leave it out of my diet forever.
Chances are that you may have had food issues before, Cat, but you didn’t recognize them as such. You might have had an ongoing level of unwellness and as long as you were consuming these foods, you really couldn’t pinpoint their effects, especially with the gut in such a state. Or maybe previously your issues were not so much gut related, but other less recognizable symptoms. Once a problem food is removed for a while and then reintroduced, your body tells you loudly and clearly if it’s a problem.
Thanks for the kind words, Cat. Best of luck as you start changing your diet and listening to your body!
Shirley
Diana says
Thank you for this site. I’ve been gf for several years. I was self-diagnosed as gluten-intolerant after 15 years of stomach pain began waking me up at night…. Three gastroenterologists and a battery of testing and drugs over the next 2-3 years, resulted in nothing helpful. I had inexplicable inflammation in the colon with no apparent cause. I finally met a woman with CD and after hearing her story, I began to hear about gluten-intolerance, so I decided to go gf for awhile.
The first few weeks I suffered from a continuous headache, almost as severe as a migraine, but worse because it was non-stop if I didn’t take a pain-killer. I almost went to the doctor to see if I had a brain tumor. My husband suggested I might be having gluten withdrawal, which I thought ridiculous at first, but the Internet informed me otherwise. I discovered that anytime i eat gluten since then, I have the same withdrawal headache for about a week.
Tonight I awoke with stomach pain, and realize I’ve been glutened. Unable to sleep, I began searching, trying to figure out the timeframe from ingestion to reaction, so I could figure out what I ate. I think it was cross-contaminated oats in granola, store-bought flavored coffee drink, or possibly too much dairy today. I also think it explains the joint pain that started today my finger, which I thought might be arthritis, except I typically experience arthritis in other joints first.
At any rate, I’ve been unable to determine what was the cause, but thanks to your site, I got up and took a probiotic, and made a cup of Aveda tea (containing licorice root and peppermint)! Which caused me to begin belching (thus relieving some pressure) and I actually feel a little better. I had never thought there was much I could do to alleviate the symptoms post-eating gluten….. So all the suggestions here are wonderful. Thank you!
Shirley says
Hi Diana–Welcome to gfe. 🙂 I’m so glad you are finding it helpful! Thanks so much for sharing your personal story with us all. It’s hearing personal stories that’s getting more and more folks diagnosed every day. As you’ve stated, hearing another’s story helped you self diagnose and your story might help others self diagnose if they can’t get answers from their health care providers.
Your husband was smart to recognize your withdrawal symptoms. There are some who will instantly feel better when going gluten free and then there are others of us who experience a withdrawal and go through detox. Yes, gluten has an opioid effect. Ron Hoggan talks about that effect here in his listing of the Top 20 Things You Should Know About Gluten.
Pinpointing what causes our gluten reactions can be challenging at times. If the granola you ate was not made with certified gluten-free oats, that would be my top suspect. The need for certified gluten-free oats (as in certified through a third-party inspector like GFCO) is critical, and I am often reminding folks to never consume mainstream oats. I wrote in detail on that topic here, if you are interested.
Last, I’m so very glad that the tips here were helpful to you in starting to feel better. Lately, the thing that has been helping me the most with recovering after being glutened is a product called Gluten Defense. I am not affiliated with this product in any way, but I’ve been amazed at its effectiveness in helping me feel better after accidental glutening. It’s a type of enzymatic therapy.
Hope you are completely back to yourself soon, and can steer clear of gluten—obviously the goal for all of us!
Shirley
Keilamarie says
I just wanted to say thank you for your work on GFE. This page is awesome! I’ve been GF for over a year and found myself super sick after eating some crackers. Boy now when I get sick it’s awful. I did read in one of the comments how as time goes on your reactions get worse-why is that? And yes, you read that right, it (eating the crackers) wasn’t accidental. Why I did that I dont know. I have other food allergies (dairy, nuts, eggs, corn, avacado) and can’t eat much. I guess I just “had it” one day. That won’t happen again. Ughh! So while I try not to beat myself up over my intentional poisoning I will use things here to get some relief-I still have a lot to read here. I am on very basic food waiting for all the noise/pain in my tummy to cease.
Thank you to everyone who spent time adding to this page I bet it’s helped more people than you know.
Shirley says
Hi Keilamarie–Welcome! I—and everyone who has contributed will—love your feedback on what a difference this page has made to you. 🙂 The way I explain the gluten reactions getting worse after one has been gluten free for a while is that when one is eating gluten on an ongoing basis, there’s an ongoing sense of unwellness (which most don’t even recognize, or attribute to other issues). It’s only when gluten is completely out of one’s system that one sees the true effects, and in isolation, so to speak. This occurrence is the whole basis for any elimination diet, where one removes foods and then systematically re-introduces them to see what the effects are. I’ve heard so very many people say that they don’t have an issue with gluten only to eliminate it and find out in a big way that they actually do.
One very interesting thing about this post has been the number of readers who have commented after purposely ingesting gluten. I applaud you all for being willing to admit that you did that, but also being ready to move on to heal your body and live healthy gluten free! I hope that you are feeling much better now and that this incident will keep you 100% gluten free. Whether it’s gluten or another food that we’re intolerant to, many of us want to “test the waters” just one more time to see. It can certainly pack a wallop to our body and is not recommended, but any “glutening”—accidental or purposeful—is indeed very validating. As far as your other food allergies/intolerances, I know it sounds trite, but keep focusing on all the foods you can eat and the list of them and dishes made with them will “expand.” Many have the same intolerances. A grain-free, nut-free, and egg-free (or vegan) blog would be especially helpful to you. 🙂
Shirley
Sharon says
When I accidentally get gluten, the reactions are very flu like, then comes the pain …I find what helps me the most is to really push the water and to lay on my side where the intestines are. Sleep helps
Shirley says
Hi Sharon–Welcome. Thanks so much for taking the time to share your gluten reaction. The flu-like symptoms are ones that many never attribute to gluten so, again, I appreciate you sharing that info as it may help many. I’m glad that you’ve found a routine that works for you in healing. Water and sleeping have been mentioned by several readers.
Shirley
Tia Michelle says
Hi everyone…I am new to this as well. Only 4 months into it and have lost 40 lbs…
When I first started to get rid of the gluten, I felt as though I was going through withdrawals..I felt like I had the flu and was so agitated. I have also noticed that when I have gluten,(even in small amounts) I don’t sleep well.
This week is our county fair and I ate a small amount of an elephant ear, not even thinking about the gluten…later I saw a booth that was selling them with a sign that read, ELEPHANT EARS CONTAIN HIGH AMOUNTS OF GLUTEN…then I realized why my workout had not been that great the next morning.
I have taken notes from a lot you guys and plan to try some of them…thanks for the tips!
Jack says
Just reading this today. A few years after my diagnosis, I started having occasional experiences of apparently reacting to slightly spoiled food – clearly not gluten, and nobody else got sick, but after 2.5 hours, I would vomit severely. Then in the last few years I have had a series of accidental, confirmed in retrospect glutening incidents (poor labeling; confused friend; bad waiter…) and my reaction has been like clockwork – just over 2 hours later, I get a distinctive funny feeling that I am now too familiar with, and within half an hour I have to puke until my stomach is empty and then I am in pain and misery until the next morning or longer. Activated charcoal and medicinal clay capsules have helped a bit, and Advil the next day helps with the headache & residual tummy ache. Yoghurt and some medicinal cannabis also help calm the tummy the next day.
Brandy says
Just wanted to share that along with re-hydrating and a bland meal I take an antihistamine to clear up some of the fog and sleepiness. I did not realized that the antihistamine was what was working for the fatigue (normally makes me sleepy when not glutened -go figure)until I had a really rough day after giving in to a craving for a flatbread sandwich and having allergy symptoms due to the weather at the same time. After feeling extremely sleepy for about 30 minutes I felt wide awake (and stopped fussing at my husband and children)chlorpheniramine maleate 4 mg from the dollar store. I am not diagnosed but have had symptoms for over 5 years which only responded to gluten free/sugar free diet. I have 3 kids and a a sweet tooth for a husband so as you can imagine have had major slip ups in the past but am being more vigilant.
Theresa says
I was so thankful to find this post today. I was diagnosed with Celiac approximately 4 months ago. It has been a huge learning curve. I have become neurotic about the food I am putting into my body; despite this I found myself glutened today. I think I was exposed airborne through some drywall work my husband was doing . I woke up to severe abdominal pain and explosive diarrhea. I went into the doctor’s office and got someone with limited information with Celia. The recommendation I received was to use Malox and Acidophilus tablets, neither of which moved me out of a fetal position. I am going to try some of the suggested posts, particularly the super juice recipe. Thanks to everyone for their words. It’s really good to know I’m not alone.
Shirley says
Hi Theresa–Welcome. I’m so glad that this post has been helpful to you, for the actual strategies for recovering from being glutened and for the reassurance that, no, you are not alone in living/struggling gluten free. Yes, you’re right, it’s definitely a huge learning curve at first. It’s only looking back 6 months or a year down the read that you realize living gluten free “soon” becomes second nature and easy in comparison to what we all go through initially. As far as your recovery from being glutened, I hope you are feeling somewhat better now. While acidophilus (or better yet, a more comprehensive probiotic) can help with healing, it’s unlikely to provide the instant relief that you need. What I have found helpful for what a reaction such as yours is veratrum album. It’s a homeopathic remedy that I use upon occasion, but never more than once (and in the recommended dosage) in 24 hours. It’s amazingly effective, so no more is needed, but when I did once mistakenly take it more than once in 24 hours, my blood pressure suddenly became elevated until I got it out of my system. So do your research on it before considering it. I always have some in my purse and just used it last week on vacation when I got glutened. Instant relief.
Living gluten free via the gfe approach makes it less likely that you’ll get glutened because it focuses on real foods, whole foods that are naturally gluten free. Even when eating out, those foods are your best bet for staying safe. You can read more and get additional ideas for living gfe by checking out my tip sheets under Getting Started with GFE, Top 10 Reasons to Live GFE, and Your Pantry is the Key to Living GFE. Please feel free to email me with questions on specific challenges you are facing.
Healing hugs to you!
Shirley
ash says
Hi,thanks for this great site i have been gluten intolerant for 13yrs and had know idea the attacks would change in symptoms but my last one wasreally different and made me really ill. But it was a bit of a relief to know that this happens and has explained alot. Thank you
Shirley says
Hi ash–Welcome! Thanks for the kind words. 🙂 I’m happy that this post has helped you understand your changing reaction to gluten. Hope you are all well now and that gluten does not make its way back into your diet. All of us who are gluten free want to stay clear of gluten because the reactions are never pleasant. 🙁 If we could only ensure that we’d NEVER get any again, life would be much, much better.
Shirley
ash says
Thanks Shirley and agree I Learnt a very valuable lesson from this because it is the first time I have not asked if it is prepared specially instead just asked if it was gluten free I had one of those she’ll be right moments and alas it wasn’t. I am in Australia and have Asked for gluten free before and they cook a gluten free item without changing the tongs or wiping down the cooking surface its sad but also people just don’t always get it because they think the actual item just needs to be gluten free . But it is nice to find a site where people understand and you are so right Shirley going to focus on trying to keep gluten out by just having good old home cooking thanks for your reply I really appreiate it and this forum P
Shirley says
Ash–It can be tough at times. We never really know what is going on behind the scenes unelss we’re there, and obviously we can’t be. Many of us do rely on good old home cooking for exactly this reason. I’m so glad that you are finding support here on gfe. 🙂
Shirley
Nancy says
Loving this community! Thanks to all for sharing. I have been gluten free since June 2012, so I am pretty early in the process. I started as an attempt to help my hypothyroid issues. Immediately, my bloating reduced and over the next few months digestive, anxiety, and pain issues were much improved. Recently, I glutened myself….my sweet BF got my “favorite” dinner – pot sticker dumplings – not realizing that it wasn’t my favorite anymore. He was recovering from being sick and I just couldn’t hurt his feelings. But I am paying for it now. I thought I would have tummy trouble, but I am having the flu like symptoms I see mentioned in so many of the previous posts. I hate being so high maintenance. People who do not suffer from this do not “get it”. Unless I have a severe allergic reaction it just isn’t a “real” condition. Anyway, I try to limit the impact of my condition on others… My test for Celiac was negative, but gluten and I are not friends. I am definitely going to try a few of these suggestions to limit my recovery time. Thanks again!!
Lisa, the GF-Idiot says
I have a bottle of DPPIV Enzymes that I take ONLY if I think I’ve been glutened possibly.
Once I took it and purposely cross-contaminated myself, mildly….While making pasta dinner (my husband doesn’t like GF pasta) I decided to skip using separate pasta servers and strainers. I had only very mild reactions later, much better than previous glutenings.
I came here because I’m starting to dread my first GF holidays. My husband’s boss invited us to his family’s Christmas party and of course, it’s not really a thing you turn down. But it made me realize that I will not be able to control a single thing and that even GF foods could be contaminated. I’m trying to figure out how to handle it. After reading all of these comments I am tempted to make up a “Glutened Kit” with the enzymes, bromelain, maybe even charcoal pills but first I made an appointment with a naturopath.
Shirley says
Hi Lisa–Welcome to gfe. 🙂 I hope you will be able to keep yourself safe/gluten free each and every day. I suggest that you read the following posts here on gfe. I think you’ll find them really helpful for staying safe on a daily basis and for participating in your husband’s boss’ Christmas party. They are: They Just Don’t Understand Part I, They Just Don’t Understand Part II (this is the one with strategies!), and Five Tips for a Gluten-Free Thanksgiving (or Group Event). Be sure to read comments on these posts as others’ experiences and advice might especially resonate with you. It’s a good idea to prepare in a number of ways.
Best of luck!
Shirley
Melanie Hartman says
If you have time could you please email me. I have been trying the gluten free diet for a few months now and I have a few questions but am not comfortable posting them in the comments. But I am a little desperate for a few answers…
Shirley says
Hi Melanie–Please email me at [email protected] and I’ll try to respond as promptly and helpfully as I can.
Hugs,
Shirley
Debbie Capretta says
Hi all,
I decided to go gluten / dairy free after 2 years of losing skin on hands and my feet in addition to feeling very physically sick in Feb 2012. I was tested and no damage has been found, but I do have DQ 8 in my DNA. I was covered as a baby with eczema until 10 years old, but this is so MUCH worse. It took me 8 months to heal my skin and in Oct 2012 felt terrific again. People around me questioned that I had gluten/dairy problems and made me feel like I didn’t so on Thanksgiving I ate stuffing, devil eggs and cookies for Christmas. I am paying dearly now and can not walk using my left foot. It resembles a burn victim and I have been bed ridden for over a week. I feel sick, foggy, swollen and pray my skin will heal soon. Give us all strength to be GLUTEN-FREE forever!
Shirley says
Hi Debbie–I appreciate you sharing your story so openly, so frankly. Testing is highly inaccurate IMO and many others (the others being experts who say that a large percentage biopsies are taken incorrectly and interpreted incorrectly, and not enough are usually taken; and some will test negative on blood work and never be biopsied, but will still have celiac). Plus, the definition of celiac is total villous atrophy so many with “some” damage have been told to continue eating gluten. Celiac is the only disease where we wait for end-stage damage before we’re told to change what we’re doing. As Dr. Kenneth Fine said, do we wait for a major coronary before we diagnose folks with heart disease and ask them to change their diet/behavior? I think not. So kudos to you for changing your diet and seeing yourself transform, and I’m sorry that you ate gluten and are seeing the devastating effects. I’m sure you will figure out a way to keep yourself 100% gf in the future. Printing out your own comment might prove to be a helpful reminder when you are tempted. As humans, we often tend to only remember the good things. Often that helps us get through life, but other times, it has us succumbing to peer pressure/self-doubts and learning hard lessons over and over again. 🙁
Shirley
Suzanne says
A very good Homeopath can also help with this.
Shirley says
Yes, Suzanne, very good homeopaths/naturopaths and usually other alternative doctors–usually more so than allopathic doctors–can help guide you to detoxing and recovery. 🙂
Shirley
Julie says
I accidentally glutened myself with Werther’s Caramel Chews… I ignorantly thought, “Its caramel I’ll be fine.” I wasn’t eating a ton, I mean a regular size bag may have 30 candies in it, and after 2 weeks there were still like 10 in the bag when I finally read the label. I was sliding down this slippery slope of emotional, and physical trouble and it wasn’t until I started researching what I had eaten did I find that, THIS is what had done it. I just had an emotional break down because I have been craving normal pizza, and crackers, and pastry…. Here I am having all this trouble over some stupid candy. I do not KNOWINGLY put things into my body that have gluten. So to have struggled with jumping off the wagon head first into a doughnut, only to be “accidentally” glutened by candy. I am angry at my body, my self, and my total breakdown. I just went GF in Oct of 2012. So I am new to everything GF, including getting glutened for the first time. I have no idea what you all mean when you say detox, bone broth, digestive enzymes and those other things you talk about. Where do I go to find out the answers to some of these mysteries? I’ve been a bit of a whiny baby tonight as I struggle with my self pity and icky feeling stomach. Am bookmarking your site!
Julie says
PS. Thanks for the help!
Shirley says
Hi Julia–I’m so sorry you’ve been suffering. Obviously, we’ve all been through the same. Even though of us who are strictly gluten free get glutened from time to time. Remember that part of your anger is your gluten reaction. Try to stop beating yourself up and focus on your recovery instead. There’s lot of info here in the post and comments on what we mean by detox and specifics on enzymes, bone broth (there’s a link right there in one of the tips from one of the contributing bloggers), etc. When you are clearer headed, go back and re-read the post for specifics. Until then, you can do the basics, things that anyone would do when recovering from an illness. Rest, sleep, hot baths/steamy showers, simple foods that are easy on the stomach, and so forth. Once you’ve recovered, read the post and print out and highlight or make a list of things that you could do next time. Unfortunately there is always a next time, if one eats out, uses products, etc. Take care, dear, and welcome to gfe. Hope to see you around on “sunnier days” soon! 🙂
Shirley
Lissy says
This happened to me too once, from an altoid. Couldn’t figure out what it was that I ate until I saw the ingredients list on the back included wheat maltodextrin. Also the last glutening that happened to me was on thanksgiving, from a handful of honey roasted peanuts. Here I went through the trouble of making gluten free pie and cheesecake, only to get glutened by peanuts. LOL! Live and learn I guess. Hope you are feeling better by now 🙂
Jeannie says
Thank you so much for posting this article. It is so nice to find a support system and know that I am not alone. I have felt alone since the beginning of my battle with Celiac. I fall into the category of – I started having problems so many years ago that no one knew what the heck was wrong with me, doctors & specialists included. I was misdiagnosed many, many times and often made to feel like a hypochondriac. My discovery of what was making me sick was a slow trial and error one and I received the blood tests and endoscopies only after being gluten free for quite awhile. My doctors kept telling me that I could still test accurately but I knew from my own reading and research that this wasn’t true. So I kept me gf diet even after they told me ‘don’t bother because you don’t have Celiac’ and that I was ‘just fine’ even though i felt awful and had every symptom in the book. I didn’t have insurance for several years and then once I did my insurance wouldn’t cover my pre-existing condition (even though I was never given a positive diagnosis it was still considered pre-existing). So, I chose to spend what money I had on eastern/holistic type medicines, doctors, alternative therapies, vitamins and supplements and I began healing. I realized that because my diagnosis was in part a self diagnosis my family and everyone around me, including myself, took this much lighter than it should have been.
Now that my body has healed any small amount of gluten in my food or via cross contamination is a big problem and I feel it 1,000x more. I am extremely careful when I go out and keep a GF kitchen at home but if I do accidentally ingest gluten I get brain fog, massive migraines almost immediately where all my senses are on acute and I can’t be around noise or light. My whole body aches and feels arthritic and flu like. I get little hive like bumps on my chest, arms and calves, I feel nauseous, get an acid stomach where I’m constantly burping, get pain in the middle upper quadrant of my abdomen, I get emotional and sometimes feel anxiety, depression, irritability (I only recently discovered the emotional symptoms were related and I’m grateful because I used to think I was just going crazy) and I get really really tired and weak.
I’ve found that taking enzymes help, both a complete enzyme product and a gluten ease one. I also read that taking enzymes on a empty stomach acts like an anti-inflammatory for the body so I do that instead of a painkiller. I drink lots of water, fresh ginger tea works both for the tummy and headache, take extra probiotics to help get my immunity up, coconut water (which works like a gatorade but is a lot better for you body), aloe water/juice, I eat anti-inflammatory foods ie broths, easy to digest greens, home-made fiber packed soft bread to help the toxins leave my body and I get lots of sleep and rest. However, if the exposure was really bad there is little I can do, time and rest are the cures.
I’ve heard wonderful things about charcoal & plan on buying some now that I’ve read good things about it here too!
I am so grateful to be here and share my story and ‘cures’ with all of you. I’ve read each and every one of your comments and I thank you all for posting such helpful information 🙂
Shirley says
Hi Jeannie–So sorry that I am just replying to this comment. The comments on this post got “lost” behind so many others on recent posts. I really appreciate you sharing your story and your remedies after being glutened. Those emotional symptoms can be a doozy, can’t they? Even after being gluten free, all this time, it takes me a while to recognize by the emotional symptoms that I’ve been glutened. 🙁 That’s in part because we’re in an altered state after we’ve been gluten so we not only experience the symptoms, but also the “can’t figure it out” manifestation, too.
The comments here are so helpful, aren’t they? I am really grateful to all the gfe readers who have contributed. Their comments paint such a vivid picture of celiac and non-celiac gluten issues!
All the best to you (hope to see you more here!) and thank you again for taking time to share your experiences!
Shirley
Kate says
Hey-
I just wanted to share some ideas from someone who is merely gluten sensitive to help those who don’t exhibit such severe symptoms and therefore may think “nothing is wrong” or “they just have the flue.”
I know when I eat too much gluten (this can vary but generally a slice of bread or two might do it) I get tired, fatigued, depressed, psorisis kicks in (if it’s done frequently), my joints ache and I can’t focus. This is often after a lengthy exposure to gluten although it can be very little gluten all in all (if that makes sense.)
I drink and eat anything fresh and generally green. I focus on fruits, usually tropical and drink lots of water. I also just let myself sit for a while, don’t interact with other people (I get over stimulated anyhow and it’s worse with gluten) and sleep if I need too. I’ll also drink tea, any kind of light herbal tea seems to work and immediately get rid of anything that contains gluten in the house (search ingredients carefully, it may be where you’re not thinking).
So many people out there don’t get the shakes, shivers and massive attacks that come with Celiac Disease but are still sensitive to gluten and don’t even know it. Until I finally gave up on everything else and just cut gluten from my diet, I wasn’t even aware how it was impacting me!
Shirley says
Hi Kate–Welcome! Thanks for sharing your perspective and solutions with us. You’ll see that many of us say that very little gluten is needed to effect us. Studies have shown that little vs a lot does the same amount of damage, too. I hope you’ll stay gluten free to keep all those symptoms away.
Shirley
Misty says
I’m so happy I found this article! My daughter was glutened this week and she’s really struggling. It never even occurred to me that you can detox the glutening symptoms. Why didn’t I think of that? I’m actually big on detox baths and cleansing diets, but I never thought to apply it to gluten. Thank you!
Shirley says
Hi Misty–Welcome to gfe. 🙂 I’m so sorry to hear that your daughter was glutened this week though. That is so tough! While detoxing from gluten is not something we can easily do when initially going gluten free (as it takes a good year to get all that gluten out of our bodies), it is fairly “doable” when we’ve been gluten free for a good while and get glutened. As you can see, everyone here has different experiences and success with different things at different times. I hope you’ll figure out the best ones for your daughter. Note what works and refer to it next time (sadly, there always seems to be a next time), but know that sometimes we detox in different ways according to different types of gluten, how much gluten we’ve ingested, etc. Hoping that your daughter will recover very quickly!
All the best,
Shirely
Julie says
Hey Shirely,
I wanted ask a few questions. Maybe some of your other readers can also tell about their experiences.
Almost all of my research indicates I should be taking a probiotic of some kind. I tried that when I first went gluten free and spent a week on the couch in agony. Is this a typical response? How long should I expect it to last before I experience “normal” again? What if anything do you all do to lessen those symptoms? Could it have been the brand I was taking? Also what kind of Multi Vitamins and supplements do you take and the reasons behind it?
Jeannie says
It could have been that your body was in such a delicate state that anything new might have troubled it. Probiotics are so helpful though in healing your gut and strengthening your immune system. Perhaps the probiotics you took were made from dairy or gmo’d soy or weren’t even gluten free. Many of us have sensitivities to dairy, myself included. And, unless the soy says it’s non gmo you can pretty much assume that it is in this country as I think 90 or so percent of corn and soy are. What kind of symptoms did you have?
I personally take multi’s, probiotics, digestive enzymes, fish oils, an anti bacterial/fungal, vitamin d and a calcium that has a few other minerals in it everyday. I just had blood work done and finally most all my levels are within normal, except my iron which is still low. Our bodies can have a harder time absorbing nutrients, supplements help that, that was definitely my case.
Shirley says
Hi Jeannie–Thanks so much for stepping in to offer Julie your thoughts on her issues with probiotics. Your thoughts were “right on”! I’m so glad that your vitamin/mineral levels and situation has improved so much from being gluten free. I do believe that some of us never ever absorb what we need the same after going gluten free because of some ongoing damage. I hope that for you it’s just a matter of time though. I had osteopenia when diagnosed and it took me 3 years to get my bones back to normal, so it can most definitely take more time than we would think.
Stay well,
Shirley
Shirley says
Hi Julie–Welcome to gfe. I’m so sorry you’re having a hard time trying to do something that should be good for you. Jeannie raises some good points. I had to slowly introduce supplements, foods, etc. when going gluten free because my system was in a weakened state and so sensitive. For me, both probiotics and enzymes are something that I need to always introduce slowly … even now. I often just give up on the latter as good as I know they can be for me. If I take probiotics daily (and always with food, despite guidance that it’s unnecessary) I can do fine with them, but if I run out of them and then just start up again without easing into them, I have issues. And some probiotics I simply can’t tolerate at all. So yes, it can be the brand and/or strength. It’s all about balance in one’s system and while probiotics help keep a healthy balance, it’s not an instant thing and in my experience, again, they should be introduced slowly. You certainly should not be on the couch in agony. There might be something else in them that is affecting you like Jeannie said. Look at them closely. Of course, none of what we share here can be considered medical advice, we’re just sharing out own experiences. A healthcare provider who is most familiar with your medical history is the best answer for helping you figure out which safe, high quality vitamins and supplements would be best for you individually. They will guide you initially and be your fallback, but over time you’ll learn your body’s reaction to vitamins and supplements. I recommend that your health care provider do testing of your levels of B, D, calcium, etc. before you start taking them.
Shirley
Sheila says
Finding this site has made me feel so much better just knowing I’m not alone or crazy. I have been having symptoms for close to 6 yrs and have been Bounced back & forth between my GI Dr & Ob-Gyn even seeing a world renowned specialist for Crohns & colitis at the University of Chicago. I was diagnosed with UC by 1st Dr and paid for expensive meds for 2 1/2 years and got no relief. Went off meds and got better for1 1/2 years and then it came back with a vengeance 13 months ago. Had 3rd colonoscopy and small bowel MRI to find once again nothing wrong. Finally contacted a childhood friend who is a Dr and he told me to go gluten free said it wld take 4-6 weeks but took 10-11 for me to feel better. I was astounded at the amount of strength and energy I have back. Also started on a probiotic (causes alot of gas pains for me). I also lost about 30 lbs when I didn’t need to lose any so now I am skin & bones. Have gained 5 lbs back but still need to put 15 back on…any suggestions? So glad others have mentioned the severe crippling pain, chills, sweats, dizziness, brain fog. My best description is feeling like I M in labor w/o epidural & have the flu from 3-12 hours. Four months gf and am finally starting to feel like my old self again. Thank you all so much for your posts and to Shirley…big hugs to you girl. It been a mindset change converting from colitis diet to gf diet and I do make mistakes and am grateful I can finally pinpoint what is viciously attacking my body. This has been a real blessing! I will stay tuned!!
Shirley says
Hi Sheila–Welcome! I am so glad that you are finding gfe and all the gfe readers to be so helpful. Knowing one is not crazy and not alone are both big factors in recovery. You’ve been through so much as so many of us have. Nobody but us would understand and nod our heads when you describe how it feels to be glutened. While all of our symptoms are slightly different, there’s that common denominator of just plain misery. Thank goodness for your childhood friend who is now a doctor and gave you that life-changing advice. So many could be helped by his advice. I wish that the gluten-free diet was one of the very first things prescribed for folks with issues like yours. Testing for celiac disease should be done first ideally, but so many are told NOT to follow a gf diet when results are negative for celiac and/or another condition like Crohn’s or colitis are indicated. The gf diet really could be helpful to so, so many of those folks. Oh, and your experience mirrors mine in the extended time it took to feel better. I remember the 3-month point and how I was feeling being an affirmation that I really was on the right track with a gf diet.
It’s going to take time for your body to heal and start absorbing food and calories. You want higher calories in your diet, but good higher calories like higher fat/good fat foods and recipes. Avocados, full-fat coconut milk, good quality dairy products (if you do dairy), peanut butter, nut butter, high fat fish (like tuna and salmon), gluten-free granola, gluten-free whole grain breads, adding good fats for baking, brown rice, nuts, seeds, and potatoes are some ideas for foods that might help you put on the weight you need.
Sending you some hugs back (and thank you for yours!) as you make this transition to being healthy again! Last for sharing the point on being grateful to have your answer … that is a critical factor that not everyone sees, either immediately or ever.
Shirley
Sheila says
I forgot to mention my cocktail for relief when evil attacks. I take ginger supplements when I eat everyday but during an attack I take Imodium, dicyclomine, and midol and drink lots of water, plus plenty of rest!
Lissy says
Thank you so much for posting this, both the article and the comments have been so helpful. I think I will try the charcoal first and see if that works the next time. Hopefully that next time will not be for a very long time though! 🙂
Shirley says
Lissy–Belated, but thank you for sharing your experience with us all.
Shirley
Sheila says
Just got glutened again not sure what did me in this time. I just got new med from GI Dr called hysoscyamine 0.125mg for the contractions and pain. Seems to work better than the dicyclomine.
Shirley says
Sheila–I’m so sorry to hear you got glutened again. It’s really frustrating not to know what the cause is and the recovery is challenging. Hoping you’re doing fine now.
Shirley
The Gluten-Free Ginger says
When I get ‘glutenized’ I immediately take a teaspoon of baking soda with water. It helps restore my system to alkaline. My symptoms are mental fog,high anxiety, emotional distress and inflamation in my lymphnodes and muscles. I literally ‘lock-up’ in my neck and upper shoulders to the point where I cannot turn or take a deep breath without sharp pain. I also take enzymes, do epsom salt baths, drink green smoothies, juice green veggies and fruits and keep to basic foods until my reaction has passed.
Shirley says
Hi Gluten-Free Ginger–It looks like you are new here … welcome! 🙂 Thanks so much for sharing your experience and what works best for you. The baking soda and water approach is a good one. Making one’s body alkaline can definitely have a very beneficial effect. I’m sure that your other tips will be very helpful, too.
Shirley
Jeannie says
Does anyone else have problems with their lymph nodes? I noticed a reader wrote problems with them when they get glutened. I find I have a sluggish lymph system quite regularly. I’ve had it checked out and it’s supposedly ok. A tad off topic but I would love any advice.
Shirley says
Hi Jeannie–I think that any time the body is inflamed, the lymph nodes can be affected. And inflammation is the name of the game with gluten. 🙁 A holistic doctor might be helpful.
Shirley
Kari says
greatsite..am so happy to read everyone’s postings. i have been gf six months – i itch like crazy. does anyone elses skin itch? i am going totally utterly crazy – i had an open wound on my skin for like five years – i really struggled – since gf it has healed and is now a dark purple scar – after i eat now – even when work so hard to make sure everything is gf i itch so badly -i use hangers to reach my back could rip off my skin – am bruised from scratching. benadryll helps a little but knocks me out and i itch thru my sleep..if i eat nothing and i mean not one thing for several days all gluten symptoms stop..but one cant live without eating anything, i only feel not sick when there is nothing in my stomach.i am keeping a food journal starting today…i have to get a grip on this…the itching is so bad 🙁
Debi says
Hi, Kari. Shirley kindly asked if I would respond to your question because I’ve been going through the crazy itching for the last year or so. Last September, I figured out eggs were causing a lot of it (as well as rashes) by accidental elimination. A few months ago, the itching returned minus the rash. My doctor had me try a few things but I knew deep down it was food related so she finally ran an IgG & IgA and I went through another type of testing using kinesiology. Both confirmed my gluten, dairy, and egg issues I already knew about, but also many other food intolerances/allergies like yeast, sesame, peanuts, sunflower, pineapple (just to name a few), etc. It also identified things like natural sugars, minerals, and chemicals that occur naturally and in our environment. I would urge you to have your doctor do an IgG and IgA to see what else is going on on top of doing your food journaling. The secondary testing I had done was done through alternative medicine. If you want to know more you can email me at [email protected]
Shirley says
Debi–Thanks so very much for taking the time to reply to both Kari and Julie and share your own personal story! I am sure that it will help them and many others reading this post, and it’s clear there are lots of readers coming here for additional help and resources. Again, it’s very gracious of you to share so much of your own personal story and volunteer to provide additional support. I can’t thank you enough!
Shirley
Shirley says
Hi Kari–Welcome to gfe. 🙂 Thanks for the kind words, too! As Debi and Sheila have commented, there must be more going on. It’s not uncommon to have more than one food intolerance and/or food allergy. Debi has given you some great information on a path forward. Keeping a food journal is a good idea; the only concern there is that reaction can be delayed for hours, even 24 hours and 48 hours (that’s not uncommon for folks who have gluten reactions). So what you think is causing the problem because you just ate it might not be the problem at all. Another great idea is the elimination diet. The Whole Life Nutrition Kitchen authored by Tom Malterre and Ali Segersten at nourishingmeals.com has detailed info on following an elimination diet, including recipes. Tom and Ali’s first book, The Whole Life Nutrition Cookbook, also walks folks through the elimination diet and has wonderful recipes for all phases, and great recipes in general as does their second book, Nourishing Meals. Hope that helps. Best of luck to you on finding answers. Hope you will and very soon!
Shirley
Felicia says
Hello there one source I’d suggest is your detergents/soaps & lotions. I use gluten free products now. Because food wasn’t enough. Also I don’t eator use anything manufactured around wheat and gluten. Cross contamination is awful for those of us who are super sensitive. Even my prescription drug choices (as I am pregnant now) that I must take are gluten cross contaminate free. Other allergies play an important role as well. I eat a very strict diet by which my husband follows. I have all top 8 allergies as well. I started gluten free and added the blood type diet and my past fertility issues aches and chronic health issues are no more. I found that the foods on that avoid list were all bad for me. Eliminating them has been wounderful. I eat a well balanced diet of virtually no processed foods. Fruit vegggies gluten free meats rice pasta and soups. Gluten free popcorn as my bad snack;) after all, I’m pregnant! My ob says my pregnancy is healthier than her non celiac patients. I gain weight healthily babies heartbeat is strong!
Shirley says
Hi Felicia–Thank you for sharing your suggestions as well, and supporting Kari! You are right that such products can definitely cause skin issues. There are some who actually have dermatitis herpetiformis and others who have dermatitis related to wheat allergies as well. Plus, at least one study showed that those using such products experiences digestive issues, etc. as well. Whether or not that’s due to somehow ingesting gluten or other issues remains to be seen. Conventional guidance says that the gluten molecule does not pass through the skin, but … Anyway, your success (and your husband’s) being free of all those offending ingredients is quite inspiring! Thank you so much for sharing with us all! Best of luck to you during your pregnancy! p.s. Popcorn doesn’t sound like a very bad indulgence at all. 😉
Shirley
julie says
I too have the insane itch. I haven’t found anything that helps. I have tried EVERYTHING I can think of. Benedryl, Claratin, Zyrtec, Lotions, Oils, Hydrocortisone Cream. I have even taken scalding hot showers. The relief from any of these, is temporary at best. So I am also interested in possible solutions.
Debi says
Hi Julie, Shirley asked if I would respond to your question because I’ve been going through the same thing. I was scratching myself raw particularly at bedtime and trying whatever I could (naturally) to help calm it while trying to figure out what food was causing it. Last September before I figured out that eggs were causing it along with nasty rashes, I was using coconut oil to dial down the itching. I also made a paste of gf oat flour, raw local honey, and lavender essential oil for the rashes. The itching came back a few months after cutting eggs out and my doctor had me trying a few things even though I kept insisting it was food related. She finally ran an IgG and IgA and my body is reacting to a LOT of foods. I also had some alternative testing done using kinesiology which identified other foods and some chemicals that my brain thinks are not “normal.” I would urge you to go to your doctor for the IgG and IgA if you haven’t already. I’ve removed all the foods that were positive on the IgG and IgA and the itching is considerably less already. If you have further questions about my experience with this you can email me at [email protected]
Sheila says
Julie Kari
You two must have another allergy! Have you both quit dairy aswell? If not I would eliminate dairy or go for further allergy testing. I feel bad for you guys!! I have had the itching & hives attacks from several meds so I know that insane itchy feeling. Hang in there! Wish I knew a sure fire way to make it stop!
Shirley says
Sheila–Thank you for taking the time to offer up some additional ideas for Julie and Kari, as well as your understanding support! You are right that any of us who have experienced itching, hives, etc. know how miserable they all can be. Dairy as a possible culprit is an excellent suggestion. It is often a player in continuing skin issues and itching, but you are right about suggesting further allergy testing as well. I hope they both will find answers soon!
Shirley
Julie says
Because I do not have insurance, I can’t go to the dr. I stumbled onto a book while researching my symptoms and went GF based on the fact that reading that book was like reading the last few years of my life. I decided to eliminate gluten and figured, I really didn’t have anything to lose.I had reached the point where I didn’t even want to get out of bed in the morning. I went gluten free in October and it has helped immensely. I don’t have all the issues I had before. The itching is… horrific. I can’t understand why I would have an allergy to dairy when I haven’t had that issue before. It is my understanding that the gluten issue can lie dormant and be brought to light during times of extreme duress. I have been through 2 such times. In the past 8 years. I believe the onset of my symptoms began after the 1st one in 2005, though I didn’t know it at the time. I know I am better than I was, but I am not where I could be. At this point, I am SCARED of where I am physically but on my own for finding out anything.
Shirley says
Hey Julie–I’ll repeat basically what I just said to Kari. As Debi and Sheila have commented, there must be more going on. It’s not uncommon to have more than one food intolerance and/or food allergy. As you don’t have insurance and need to do your own research, you might try the elimination diet. The Whole Life Nutrition Kitchen authored by Tom Malterre and Ali Segersten at nourishingmeals.com has detailed info on following an elimination diet, including lots of terrific recipes to help you along the phases. Tom and Ali’s first book, The Whole Life Nutrition Cookbook, also walks folks through the elimination diet and has wonderful recipes for all phases, and great recipes in general as does their second book, Nourishing Meals. I sincerely hope that info is helpful. I’m not sure if you have any free clinic type resources in your area that do allergy testing, but it’s worth checking out. Oh, in regard to not having a dairy issue previously, it’s only when we remove foods from our diets that we get a clearer view of their individual effects. Otherwise, the body is just fighting a bunch of enemies at once. The doctor who diagnosed me with gluten intolerance says that it like peeling the layers of an onion, and that sometime we get worse in some ways before we get better. It can be frustrating and difficult for sure, but if the end result is figuring “it” all out, the challenges are worth it. Do take a look at the elimination diet. Best of luck to you on all!
Shirley
Debi says
Julie, I never had a problem with dairy either. I even did a trial run off of dairy back when I eliminated gluten. However, a year later it was a problem. It is not uncommon for more food issues to creep up as our bodies heal from years of illness without a proper diagnosis. Now, dairy is off the charts along with many other foods for me which previously weren’t issues.
If you are unable to see a doctor, I would do as Shirley suggested and try the elimination diet. I would also make sure that your personal care products and cosmetics are gluten-free.
Kari says
ty all so much for taking the time to reply and for your kind words. i am learning about living gluten free and i am functioning at least with far less agony…but the itching gets wild and very hot water in the shower on the areas seems to burn it away if only for moments. i will look at all the links suggested and i am going for allergy testing. i was gluten free for like 4 months when had IgA and IgG testing…my numbers were super low but I was told since I was gluten free that long before the test it was a false negative….who knows..i am just glad to meet all of you. I have a family member with celiacs too and she itches constantly. am going to share this site with her. thank you all again!
Shirley says
Kari–We’re so glad to meet you, too, and are hoping your find answers and relief soon! Big hugs to you!
Shirley
Debi says
I hope you get some answers soon, Kari! In the meantime, coconut oil helped dial down the itching my first go round before I figured out eggs were a problem. It could be worth a shot (and easier on your water bill) if you want to try it. 😀
Kari says
ty debi! i will so try that too! i have removed eggs from my diet…well egg eggs…will have to read labels too to make sure none are in anything..dairy is gone..alot of weight is gone too and am not trying for that…so that is a plus cause i was a good size…so not worried about that yet..if it keeps going like this though and i keep eliminating more foods in about six months i will be concerned about it.. 🙁 but thank you all again! blessing upon everyone as we plug along here… xoxo
Rozachka says
You don’t say whether you have a rash associated with your itching. I thought I would just share my experience – my coeliac symptoms were with me since I was in my early twenties, but when I went through the change it hit me (like somebody else wrote) like a train. Just before, I developed a condition diagnosed as lichen planus which is another autoimmune thing. I had it in my mouth (blisters and ulcers) and an ITCHY purpley lumpy rash in my navel, waistline, elbows backs of arms, hairline. It virtually disappears after 18 months, just occasional flare ups. Hope this helps. Best wishes, and thanks for a useful site.
Kari says
hi Rozachka! ty for your kind and helpul comment. yes, i do have a rash…is ugly and on my right side of my chest. i will research what you had. it is a red raised bumpy rash in muliple places…kind of leopard spot in size. i know i have DH so i try so hard to watch what i eat to be certain am gluten free. i use glute free makeup and lotions and no more lipstick too. i found one gf lipstick but hate the color. i ate red meat three days ago – alot of it too – first time in weeks and i swear to you the flaming insane itching went from 100 to 45 on the i cant stand this scale. i have no idea what that is all about either…so glad i’ve been diagnosed correctly but this new way of life is challenging to say the least and hard to bear the brunt of mistakes. ty again am going to look up what you said right now. i hope everyone here had a good day today and manageable symptoms and hopefully none at all today!! 🙂
Sheila says
I just wanted to say that I had a piece of dentyne fire gum, a few m&m’s and junior mints in the last week and have had flare ups. All of these are on the gf list as safe?? Goin for further allergy test tomorrow Hope everyone is feeling well!
Amy says
Gums are wrapped in gluten is wrappers but you would have to be extremely sensitive unless you are eating that gum all the time.
Kari says
shiela – hi -call the manufacturer of each item an ask? that might help…sometimes i type a question into my search engine like “is such and such gluten free” and links come up and will tell me the answer. i was told for my itching i could be low in iron. i ate meat like 4 days in a row and i swear i dont itch. i am stunned. so am off to find supplements and a herd of gf beef. i could be off base as i find out i usually am..sigh…but am not ripping my skin off cuz of scratching and so quickly too so am very grateful. i could kiss a cow at this point. that sounds awful but true! i hope everyone is doing okay! 🙂
Sheila says
Thx Kari I’m so glad u found out about the iron prob & meat solution. I’d be makin out w a cow too
julie says
OMG!!!! I didnt know until I read Kari’s discovery about the meat…. I too have recently upped my red meat intake. The itching has greatly diminished but I had not connected the dots yet…. Oh how I hope this is the answer…..
Kari says
ty sheila! and Julie i am so glad your itching is diminishing! i swear the beef is golden to me….i feel stronger…and ZERO ITCHING…and my rash is healing…i am planning to go find an iron supplement herbal too- now that am off work for a few days. i noticed i feel weak sometimes..but if i eat a banana once a day…i am not weak thru my day. two aha moments this week 🙂 i so hope your itching goes away!
Kari says
one more thing..i guess most of the foods we eat when we are not gluen free, are added iron fortification and minerals and vitamins..eating next to nothing out of fear i guess would cause low iron, low potassium…i read those who are gf need to be careful and make sure we add things our diet to get the nutrients one needs. makes sense to me!
Amy says
I’m miserable.I haven’t suffered from being glutened like this in about 5 years.I’ve tried a few new restaurants and somewhere I ate a lot of gluten by contamination or an uniformed employee.I’ve been constipated for two weeks. I usually feel crabby, tired, a quick weight gain of about ten pounds, and miserable, nausiated, back ackes terribly,just honestly not a nice person, very very negative with not even knowing sometime. I have never had a cure, but time and starving.Basically eating as little as possible. I’ve tried laxitives and my doctor says not too, I try probiotics, and now milk of mag. Nothing. I feel like at any moment when I eat I could vomit..I’m excited to see this site because I’m going to try everything all of you say..I’m glad I’m not alone in this..It makes me feel NOT crazy because I feel like people can’t see the pain in my stomach and think I’m exaggerating but I’m not..Thank you guys soon much.
Shirley says
Hi Amy–I’m so glad that you’ve found this post helpful. It is indeed just miserable after one is glutened and as you can see we all have a wide variety of yucky symptoms. I hope you’ll find some answers here. We all try to stay safe, but we still occasionally get “glutened” so these tips can come in handy for sure.
Healing hugs to you!
Shirley
Em says
I’m with you, Amy! I sometimes ask myself if this is really happening! I seem to gain weight. the explanation from my acupuncturist is that it causes “dampness” which blocks the flow of energy and slows everything down. In addition to the stomach and gut pain, I tend to gain weight suddenly, I get swollen glands, and sometimes swollen hands and tremors in my hands. I take ginger in the tincture form as well as a tincture of an herb called Cleavers for my lymph system. Warm lemon in water helps too. For a while EVERYTHING will be difficult to eat, which makes the weight gain all the more insane. But it passes. ANd it will for you! Hoping for a speedy recovery!
Amy says
Day fifteen: feeling the swelling going down..still exhausted but seem to be getting a bit better..having a lot of stomach pain..but swelling down..horray I can put on pants now..lol hot lemon water great.
Shirley says
Amy–I’m so glad you’re improving. Your experience demonstrates how long it can take one to recover after being “glutened.” 🙁 My gluten-free doctor used to say that it took 6 weeks after accidentally glutening. She always said it took 6 months for gluten to leave most of the body after going gluten free and even longer (a year I think) for it to leave one’s brain.
Shirley
Shirley
Amy says
Its been over 20 days and my constipation is going away..I believe my stomach/colon inflamation is about 50% better. I’ve been eating mixed baby greens salads every meal. I just feel better 29 day plus can seem like forever hoping after a month I’ll be hundred percent.I’ve lost 3 of the 7 pounds I gained from being backed up.My moods are getting better.Anyone that experiences longer I have so much sympathy and empathy towards you and your body..wishing you all well.
Amy
Shirley says
Hi again, Em–Many thanks to you for supporting Amy by sharing your experiences here! I am sure that many others will appreciate you sharing them as well.
Shirley
Em says
It’s great to share, Shirley! Glad I found your site. I’m in Europe on my husband’s business trip right now. Barcelona was excellent for gf – I had paella quite successfully (although now I’m sick of it!). Paris on the other hand… they add extra gluten for stuff. I was glutened on the first day out by a waiter who insisted he knew what it was. I think it was the potatoes. Needless to say, we did rotisserie chicken at our flat successfully. This is a VERY difficult city to be gluten free. ANd painful in more ways than one.
Shirley says
Hi again, Em–I’ve heard that Spain is doing really well these days feeding folks safely gf. I know Paris now has a gluten-free bakery, and that the lovely folks from GF Patisserie and Celiac Husband are opening a gluten-free B&B/apartment 2 1/2 hours southwest of Paris soon, but that’s all I know. So sorry that you got glutened, dear!
Shirley
Em says
It’s our last day here and I am thinking of hunting down that bakery. But I have to say, last night I really embraced gf! We went to a cheese shop and bought the moldiest, stinkiest cheese that they had (goat’s milk – sometimes cows don’t make my belly happy either), a bottle of dry white wine and some fruit. It was wonderful!
Shirley says
Em–Glad you had such a fine ending to your trip! 😉
Shirley
Ron says
Amy – you said:
“I usually feel crabby, tired,… and miserable, nausiated, back ackes terribly,just honestly not a nice person, very very negative with not even knowing”
I KNOW EXACTLY HOW THAT IS! particularily the not being aware of the negative attitude.
When i first diagnosed and ctopped the gluten, people i had known (friends) for years told me i was “alot nicer now”.
that kinda hurt, but obviously i am not alone – thankns for that post!
Amy says
Its been over 20 days and my constipation is going away..I believe my stomach/colon inflamation is about 50% better. I’ve been eating mixed baby greens salads every meal. I just feel better 29 day plus can seem like forever hoping after a month I’ll be hundred percent.I’ve lost 3 of the 7 pounds I gained from being backed up.My moods are getting better.Anyone that experiences longer I have so much sympathy and empathy towards you and your body..wishing you all well.
Amy
Amy says
Finally I’m close as it gets… to normal.my stomach has no more swelling and I no longer look pregnant.I still gained about seven pounds but I think it will shed off soon now that I can function physically and mentally.my Colin back to normal and my boyfriend said he can tell by my mood..ecxcited
ash says
Hey – I am really sorry to hear that you are not well it is no fun at all being glutened it makes you feel so so so ill… When i have been glutened I normally for the first couple of days i just drink gatorade (gluten free in aus) mainly to make sure i dont get dehydrated because that makes me feel more sick dizzy and on edge I then go to a really simple diet of plain rice pasta or gluten free bread then i start to introduce protein and vege – when i have been glutened i stay away from dairy and that is the last thing i add in – ginger is awesome for feeling nausiated it really helps get rid of it the simple diet and heaps of water helps. Not sure if you have the same tablets as we do but i have one called mintex it really helps the stomach cramps might need to check with dr not sure if it has a reaction with other things or not.. oh sounds strange but I also try to say a few nice things that i like about myself to me helps with the negative thoughts and i do some relaxation exercises.. I hope that you feel better soon and are soon on the mend. sorry i know i wrote an essay
Amy says
Thanks soon much..Its so nice to see such a quick resp once.
Shirley says
Hi Ash–Thanks so much for your heartfelt reply to Amy! I love how you are all supporting each other on this post! And never worry about writing too much. These issues aren’t solved in a few words. 😉
Shirley
Amy says
I agree..I really do get comfort out of hearing peoples opinions and ideas..I spent all night reading ideas from this site, due to back ackes from being glutened.. I think I actually slept better after reading ideas from site..
Shirley says
Amy–Again, so happy to help in some small way. Hope you continue to feel better!
Shirley
connie says
aloe vera gel, two tablespoons every few hours helps! my symptoms include severe neck pain, migraine, severe vomiting and diarrhea. ugh! i concentrate on breathing exercises to keep my mind from torturing me with guilt and wonder (wonder what i touched? ate?) and the fact that i miss a days work ( will my co workers who have to carry the load hate me?) and i alternate heat and ice on neck and head, curl up in a ball and groan for 24 hrs…then its ginger tea and coconut water when i can finally keep food down, udis bread toasted. eventually light chicken soup, baked potato, maybe a scrambled egg. prayer…lots of prayer… blessings to all who suffer with this!
Shirley says
Hi Connie–Welcome and thank you for sharing your “tried and true” remedies with us all! I am sure that they will help others.
Shirley
Amy says
Thanks
Mary in Michigan says
I’m actually dealing with the aftermath of being glutened right now. It seems that different types of gluten and different methods of being glutened affect me differently. This recent attack has been marked mostly by gluten ataxia, a horrible and frustrating neurologic twist of dysfunction.
Some of the tactics that seem to help me are as follows:
– Tums (not sure why – maybe a combo of calcium for the muscles and also the coating of the digestive tract – maybe some of the same actions as charcoal tabs??)
– rest, quiet, and sleep, of course
– ibuprofen (anti-inflammatory, of course)
– decrease stimulation (sounds, lights, etc)
– diet pop/soda – as horrible for us as diet cola is, it somehow seems to help me during these times. I know it’s not just the caffeine because just tea or migraine meds with caffeine don’t help as much as diet cola. One doctor thought that the carbonation helped with the metabolic processes, which might be why ginger ale seems to help others who have posted. Maybe it’s that the artificial sweeteners have some strange effect on the nervous system that actually helps in this situation. I don’t know, really. For whatever reason, the combination of carbonation, caffeine, and sweetener somehow helps in the short run. In the long run, I know the bad effects of diet cola so I stay away from it as much as possible. When I get really desperate, I do try it as a remedy and it always seems to help somehow.
Thanks for summarizing the earlier comments. It would be great to see a compiled list of remedies if anyone is will to undertake such an endeavor!
Best of luck and health to all!
-Mary in Michigan
Shirley says
Hi Mary–Welcome to gfe. 🙂 I’m so sorry that you are recovering from being “glutened.” I appreciate you pointing out, as I and others have as well, that each time one is glutened, the reaction and symptoms can be slightly different. And we can’t have enough attention brought to gluten ataxia. It is not well known at all and I’m convinced that so many with gluten issues have been misdiagnosed with other conditions or at the very least that going gf can help many who have other conditions with ataxia type issues.
I so appreciate all your input. I have heard many say that soda, not necessarily diet soda, seems to help after being glutened. I know that I, myself, have looked to soda for relief attimes. I do think that the carbonation is helpful. I thought the sugar also helped. (I never drank diet sodas, so I can’t comment on that.)
I’m not sure if I’ll do a follow-up post summarizing all the comments, but I certainly might re-visit the topic again. Thanks so much for your tips, thoughts, and support to others! I hope you are back to your “old self” very, very soon!
Shirley
Mary in Michigan says
It’s great to know that I am not the only one who seems to get relief from such an overall unhealthy substance. I haven’t drank regular pop/soda in years so I don’t think I could handle drinking that again. I imagine, though, that it may be as helpful as the diet pop is. I actually have had regular (non-diet) ginger ale as a relief aid but I’d have to play around with it a bit more to compare it’s effects to diet pop.
Anyway, thanks so much for your reply. I think it’s really admirable and impressive that you are replying to every single comment. Awesome!!! And very much appreciated!
I did manage to go for a little walk outside a bit ago and that seems to have helped in the recovery also. I have found in the past also that “light exercise” or even having conversations seems to help. I don’t know what it is, but it seems to be a bit of a positive feedback loop. If you can just take that first step or initiate that conversation, then the improvement seems to spiral up.
Of course, now my stomach is churning and gurgling like an automatic dishwasher! If only it were doing some helpful cleaning on my insides like a dishwasher rather than aggravating and irritating my entire digestive system…… 🙂
Ugh……..more brainstorming and experimenting to find relief…….and making sure I have any meds on hand that I might need…….
Thanks for your help!!
Mary
Shirley says
Mary–It’s always refreshing to know that we’re all human, and not perfect, and sometimes an “indulgence” actually helps even if there’s no clear explantation as to why. 😉
Many thanks for your kind words. I’m not sure I have replied to every single comment on this post, but I do try to reply to all my comments. If you are willing to take the time to comment, I am more than happy to reply and acknowledge your comment. 🙂
Any type of movement … walking, yoga, etc. … causes our body to release toxins. It is real!
Hope you continue to get better. As I mentioned in the post and/or in comments, I have found that Gluten Defense helps break down the gluten in my body and help me feel better sooner. I would NEVER take such enzymes and willingly consum gluten, but I do believe that they help as preventive measures when eating out and when one knows one has been glutened.
Shirley
Mary in Michigan says
Thanks for the tip! I have definitely been looking at some of the gluten relief products, and I, too, would never intentionally use the product to “allow” me to eat gluten. It is SO not worth it!!!
It would be great, though, if these products could give relief during times of need after being unintentionally glutened.
Thanks again. 🙂
Mary
Shirley says
Happy to provide another option that would be potentially helpful for you, Mary! 🙂
Stay safe out there,
Shirley
Sheila says
I am soooo stupid. I thought twizzlers were safe and had a bunch last night. I am so nervous what’s gonna happen to me today. Been gf 6 months & haven’t had a severe attack in almost 2 months Please pray it won’t be so bad :(((. Lesson: READ LABELS EVERY TIME FOR EVERY THING YOU PUT IN YOU MOUTH!!!
Mary in Michigan says
Really?? Twizzlers?? Dang……I haven’t had any in ages. I hope you are okay!!! I wonder if one of those gluten digesting products would help at this point. I don’t know how or if they work hours after ingesting the gluten. GOOD LUCK!!!
(and THANKS, Shirley, for all your help!)
-Mary
Shirley says
Mary–You’re welcome, of course. Again, I am always happy to help. 🙂
Shirley says
Sheila–Each of us has had at least one of those experiences when we didn’t read the ingredient label. 🙁 It’s not about being stupid at all. It’s just that we let our guard down sometimes. So sorry to hear about your experience! Hope you recover quickly by using some of the tips in this post and the comments. Thank you for reminding everyone that Twizzlers are not gluten free.
Shirley
Patti says
When I get glutened I have severe cramping and I make a LOT of trips to the potty. When it happens I eat homemade sauerkraut, drink Aloe Vera in a little juice, yogurt and take digestive enzymes.
Shirley says
Hi Patti–Thank you so much for sharing your personal experience and what works best for your recovery!
Shirley
Sheila says
Hey Shirley
I think I’m going to try the enzymes cause I have had slot of attacks lately. I don’t know what I’m doing wrong & am very frustrated. Do you recommend the gluten ease or the gluten defense? I also read people like digest gold. Please let me know as one is $15 & the other is $30. Thanks Shirl!! Hope everyone is doing better than I hav lately.
Shirley says
Hi Sheila–I have no experience with Gluten Ease or Digest Gold. My only experience has been with Gluten Defense (and one other product, which I believe now contains gluten 🙁 ). While Gluten Defense helped me tremendously, I don’t know if it will help you or which is better. I am not medical professional, so I’d suggest reading the ingredients of each and reading product reviews on Amazon and other sites that sell it. If you can get advice from a trusted health professional, that would be ideal. I will admit that I do like the price of Gluten Defense. A bottle lasts a long time. My son’s doctor recommended Gluten Ease for him, but I don’t know if she’d done a comparison of the products available. Of course, all that said, it is really critical to determine the source of being glutened. Take out all processed products, even “gluten-free” products and reintroduce them one by one, days apart to see if you can identify the culprits by your reaction to them. Sometimes it’s just one or two products that one mistakenly thinks are safe that continue to wreak havoc. When eating out, focus on foods that are naturally gluten free and be sure to give instructions. For example, if ordering a steak, ask if it’s been marinated, and if so, in what. Ask that they cook your steak on a clean part of the grill, on aluminum foil, or in a separate pan. You can do that type of thing matter of factly and kindly, but you want them to know how serious your need is. Take care … literally, dear.
Shirley
Sheila says
I quickly browsed Thru all these previous posts and thought you had mentioned both the defense and the ease so I wasn’t sure. Thanks for your quick response. Xoxo
Shirley says
Sheila–In hindsight, I–or others–probably did because I know others have used it.
Best of luck! xo,
Shirley
Jeannie says
I use both Enzymedica Digest Gold and Gluten Ease. I take the Digest Gold daily before meals (usually dinnertime I remember to take it but sometimes also lunch). It helps me tremendously. I also take Gluten Ease if by chance I’ve been glutened and those help, it’s no magic pill taking away all of the awful symptoms but they certainly help. I will alternate the two of them every few hours if I am sick and take probiotics also to get my gut and immune system back in shape.
I also take the Digest Gold before a glass of wine and it helps me tolerate the sulfites. There was a time when I couldn’t even tolerate a glass and life was pretty bleak.
I’ve read that taking them on an empty stomach and keeping your stomach empty helps reduce inflammation. Not sure on the exacts of that but I sometimes do it as well.
I buy them online at different sites and often in lots of 2 or 3. They are cheaper that way.
Hope this helps
Shirley says
Hi Jeannie–Thanks very much for sharing the additional info on how these enzymes benefit you. I’m sure that info will help many. 🙂
Shirley
Em says
Hi Shirley, I had a delicious cookie while I was out from the Alternative Baking Co. marked gluten-free on the front and back. I didn’t have my glasses so I just double checked the ingredients, which listed the first ingredient as gluten free flour. Check, and check. Ate the cookie pretty quickly, and knew in less than 10 minutes that something wasn’t right. I kept the package and got home – put on glasses – and saw (under the nutrition facts) the allergen information box that says that it is produced in a facility that also processes wheat!! Are they kidding? How do they not know about cross-contamination! How can they say that they are Gluten-free! So I took two Gluten-Ease, and learned another lesson! 🙁
Shirley says
Em–There are no rules that keep companies from labeling their products as gf if they are produced in a facility that also produces wheat. First, the statements like “produced in a facility that also produces wheat” or “produced on equipment that also processes wheat” are completely voluntary. So lack of those statements from a manufacturer implies a safety that is definitely not there. In addition, one might think that we’d be safer if we skipped the products produced on the same equipment. However, testing by the Food Allergy & Anaphylaxis Network (FAAN) for the same concern regarding products containing peanuts found that the products labeled “produced in a facility that also produces peanuts” were more likely to contain peanuts than those products “produced on equipment that also processes peanuts.” Obviously peanuts are not the same as wheat, but these results were presented to the FDA when it was initially collecting data on gluten-free labeling. The information was shared with the FDA to show how meaningless food labels can be as well as the scope of the food allergen issues within food manufacturing. It’s also important to note that there are actually many products that are certified gluten free by independent certification organizations that are produced in a facility that also processes wheat and even on the same equipment that processes wheat. For those products, the idea is that strict protocols are followed for separation of ingredients, cleaning of equipment between product runs, frequent testing of products, etc. This discussion is really much more of a “can of worms” than most people realize. Even independent certification is not foolproof as not every product that is produced is tested by the certification agency to ensure its gf status. We most definitely need gluten-free labeling laws so that everyone understands what they are buying. Last, it’s interesting that you should mention this company because I’ve actually bought their “gluten-FULL” cookies before by mistake because they were sold side by side with their “gluten-free” cookies. That’s a seller issue though and luckily I realized my mistake before I ate the gluten-full cookies. I looked at Alternative Baking Company’s website and found their policy on gf items. You can read that here. You will see that they do a LOT to ensure their gf cookies are actually gf. And, all that said, some of us who are gluten free react to less than the 5 ppm they say that their products test at. None of this is very straightforward, is it? 🙁
Shirley
Em says
I emailed ALternative Baking and they explained their procedures in detail. They sure do a lot to ensure that cross contamination does not occur! I was really glad to read that. I just started reading the “Gluten-Free Bible” and the author notes that companies are putting up lots of disclaimers to avoid litigation. I guess the responsible companies have to do much to protect themselves, but it is confusing for the consumer. I simply don’t want to get sick! THanks, Shirley. It’s great to have a venue to process these issues!
Shirley says
Hi Em–Another delayed reply, but thanks for sharing this info and your viewpoint. It is very confusing as it stands and we all want to stay safe! Looking forward to improvement in the situation in the future, but no matter what I will continue to focus on real, naturally gluten-free food to keep me safe.
Shirley
Keilamarie says
Hello,
I have been reading all the posts since I found this site almost a year ago. I read about shampoos and wanted to give another product name to try. I had REALLY bad dry eye due to using regular shampoo. I cured it in about one week using Renpure Organic shampoo/conditioner. I use the one in the purple bottle (shampoo) and the Blue bottle (conditioner). The bottle even states gluten free. I also have super long hair and it does a wonderful job. It’s budget friendly too. I buy mine at ocean state job lot for $2.00 per bottle but the website has it for more, but not much. Happy washing!
Shirley says
Hey Keilamarie–Thanks for the info. Very interesting for sure!
Shirley
Keilamarie says
Hello again,
Since that post worked I’m going to try posting some very important information for everyone. I did write this up a long time ago but it never posted. Once I learned I had Celiac I also learned I had other food allergies, Raynaud’s disease, and other wonderful things. I went GF and, after learning how to make better choices got glutened less and less. No matter what I did though I couldn’t seem to digest my food (TMI-pile of sand on bottom of bowl) even 2.5 years later! I was also suffering with joint damage/pain. I went searching for an answer of why I wasn’t getting better. That’s when a wonderful person on celiac.com told me about lectins! Lectins are just like gluten and might be responsible for digestive issues. So if you are trying and not getting better check out this link. It’ll explain everything. Best of luck to everyone. And here’s to your health!
BTW, removing lectins from my diet cured my joint issues within one week and I was seeing a PT 3 times a week! I lost more weight and yes, normal bm’s for the first time in my life.
Shirley says
Hi again Keilamarie–Thanks for sharing. Mark’s Daily Apple and a few other sites have addressed the potential negative impact of lectins on the digestive system and body in general. Glad removing them was the answer for you!
Shirley
jenna says
I’m 21 and was diagnosed with celiacs just over 3 years ago. I was not given a lot of information about the disease by my doctor so have had to learn most about it by myself. Until reading this article I thought I had to just bear the symptoms of gluten exposure when I had them as I was never told anythingthat.may help.
It’s much appreciated
Jenna
Shirley says
Hi Jenna–Welcome. 🙂 Unfortunately, most individuals are not given much information when they are diagnosed. The medical community, in general, is very uneducated on celiac and non-celiac gluten issues and all the related topics. I’m so glad that you’ve found this post and will be better prepared to deal with being “glutened.” It happens to all of us from time to time, so having some strategies is critical.
Shirley
Delise Dickard says
Shirley,
I have two suggestions that are more psychologically healing than physically. I’m a therapist — go figure!
One VERY effect thing I try to do when I get glutened is to curl up in bed and read through all these lovely and informative comments. I always get new ideas feel the support.
The second is in the story of the way this glutening episode happened Its funny to me now, but won’t be in about an hour when I’m curled up on the bathroom floor.
Here’s the story: I started writing a book almost three years ago when I was just 2 or 3 weeks gluten free. Since then (unless glutened) I am live in an entirely new body — a healthy one. Many of you have some version of this story or hopefully will…very soon. In the book I wanted to document my own journey because it fascinated me that so many of us who have such similar stories have been dismissed by our friends, families and, most outrageously, our doctors.
So today, almost three years later, I took the first solid draft of my book to Staples for some copies that will be edited. To celebrate, my husband and I went out to eat. Of course I gave the whole gf lecture to the waitress and ordered off a gf menu. But my taco salad had some very suspicious looking Chips on top.
I caught that slip up and the waitress whisked my plate away knowing (from me)she couldn’t just take the chips off. While I waited for my gluten free version to arrive I tasted my husbands selection — which was also carefully ordered gluten free. After three bites the manager came and admitted the waitress had made a mistake on both orders. I was nailed! So as we talked my familiar red rash began emerging up my throat and across my cheeks. My eyes burned and I started to feel odd. But my severe symptoms lag by about 3 hours.
I always make a point of explaining what I know about gluten when someone has made me sick. At the least I feel they owe it to me and I might save the next pour soul. It your suffering is not completely in vain!
The manager was very apologetic, saying he had celiac in his own family. I asked if he was at least tested for celiac and he said he didn’t have the symptoms. Among other problems he showed me that he had severe crippling arthritis. So by the end of the conversation he said he intended to get a celiac test and either way wanted to consider trying gluten free living. He also gave me a card and said he wanted to buy the first copy of my book!
So many thanks to Shirley and this whole group for all the good ideas being shared. THIS gives me some healing…
Shirley says
Hey Delise–Huge congrats on your book! What an accomplishment! I can’t wait to read it. 🙂 But what a tale to go along with that momentous occasion! First, I am so sorry that you got glutened again on what was to be such a celebratory evening. 🙁 Boy, is that a telling experience on so many levels. So glad that you educated that manager about feeding folks safely and his need to get tested (or possibly just go gluten free, of course, if the test is negative). At the CCA conference I attended, I heard a GI celiac “expert” speak and he only recommended testing for children who had symptoms. Since 30% to 40% of those diagnosed with celiac have no symptoms (although often after diagnosis, it is often determined that individuals did have symptoms), I think it’s inexcusable not to test all family members. We won’t get the diagnosis rate up and save folks from years of misery and sometimes issues that can’t always be reversed (e.g., short stature) otherwise. Last, I am so glad that this post and all the comments comfort you when you’ve been glutened. That is such a huge compliment to everyone who has contributed!
Shirley
Tim says
I was diagnosed with leaky gut with gluten, corn, dairy and a bunch of other stuff. I was initially careful but constantly push the limits now by eating out at Chinese restaurants (my weakness) eventually I get “glutenated” and my world crashes. Heart palpitations, tingling in extremities, brain fog and dizziness. Nothing ever helps except for time and rest. I will try some of these remedies now as I am on day 2 of one of these episodes. This stuff is scary!
Shirley says
Hi Tim-Welcome. Most of us can identify with those symptoms. I hope that the remedies are helpful, but more importantly, I hope that you will be more careful again. Please remember that damage is being done when one is glutened, symptoms are not. Scary indeed!
Shirley
Suzanne says
I am newly gluten free this year. I tend to “slip” like a chronic alcoholic when presented with a piece of apple pie or some such that everyone else is having and there is not a GF option available. I find it especially hard in Wyoming, when I visit my parents. I also live in Costa Rica and there is NO consciousness of gluten intolerance here and the food is rife with food additives like MSG and gluten is very hard to avoid. When I am first getting off a bout of wheat eating, I CRAVE baked goods so much I could cry. It seems to be an addictive substance for me. Thank you all for reminding me how lucky I am not to have more severe symptoms and for all the suggestions on how to detox when I slip.
Shirley says
Hi Suzanne–It’s good to have you here. It’s really important to have strategies to deal with these situations so you don’t slip, like making a super easy, crustless gluten-free apple pie that everyone will love and you can enjoy safely, too. And having other delicious baked goods that you can easily make like Flourless Peanut Butter Cookies and Flourless Oatmeal Cookies. In simple terms, you are addicted to gluten. As Ron Hoggan shared in his guest post Top 20 Things You Need to Know About Gluten, “Gluten is highly addictive through the opioid peptides it contains and the excessive zonulin production it incites. Zonulin allows these opioids access to the bloodstream and the brain.” Basically, you lose control once you take that first bite of gluten. Hope you’ll check out these recipes and come up with plans to stay gluten free. You might find the series, They Just Don’t Understand, Part 1 and Part 2 helpful, too.
Shirley
Suzanne says
WOW. Shirley, all I can say is how amazingly helpful this is. Yes, my “catchphrase of the moment”: “They just don’t understand!” Argh!! My friends are great at bringing me cookies and the like. There are times in this process that I have wanted wheat pastry so badly I could cry. That is definitely an addiction. I cannot thank you enough for your commitment to health and your encouragement. Much love to you.
Shirley says
Suzanne–I’m so glad that you are finding all these posts so helpful. They really don’t understand. They can’t. Please realize that you are not alone in this plight. As you can see we’ve all been through it to some degree. You will stop wanting those gluten-full items when gluten has been out of your system for a long period of time AND you have great gluten-free alternatives. It will happen, dear! Keep visualizing yourself as gluten free and thriving with those gluten-free treats from time to time. Over time, it will become reality. 🙂
xo,
Shirley
Las says
I’m one of the “self diagnosed” gluten sensitive people.
I have had bad acne since the age of 14, and i have been underweight as long as i can remember.
I coincidentally read up on Gluten and it’s effect on the body, and everything made perfect sense.
I went strict Gluten free about 3months ago, and for the first 3 weeks, i was terribly ill. Like i was having the worst flu of my life, and it wouldn’t go away.
I then started to feel somewhat better, and for the last 2weeks or so, i have actually been feeling pretty good, despite losing even more weight.
And then…
I was at a family party Sunday, and even though i had been strict gluten free for such a long time, i decided that i wouldn’t be a burden on my family, so i just ate whatever was being served, and i didn’t get any reaction that day, and actually felt fine up until Monday night. Then it hit me hard, like a flu on steroids. It’s now Tuesday evening, and i am still feeling miserable.
The last 3 months since going Gluten free, i have been thinking that i may not be gluten intolerant, due to the fact that i didn’t feel better immediately like most people.
But after this incidence, im pretty sure that i do not tolerate that stuff at all.
Shirley says
Hi Las–It’s good to have you here at gfe. 🙂 There are quite a few of us who don’t feel better right away. In many cases, it’s due to that detox effect. Think of a drug addict going off of drugs. Gluten has an opioid effect and some of use get worse before we get better. It sounds like you have found your answer, especially with a flu-like reaction to gluten (which as you can see many of us do experience). I am concerned about you continuing to lose weight though. It would be ideal if you could find a knowledgeable health care practitioner to test you for vitamin/mineral deficiencies, associated conditions, etc. and guide you through the healing process.
All the best in your healing and transition to 100% gluten free from this point on,
Shirley
Jill says
My teenage daughter got glutened not once, but twice this past weekend when we were out of town. She is vigilant about her diet and we are all gluten free at home to avoid cross-contamination. She ordered from the gf menus with extra conversation with the server. She just got a job and is now shot – dizzy, no energy, depressed and miserable. She is anxious about everything – understandably so & so am I. THank you for these suggestions and assuring that things will get better with time and care.
Shirley says
Hi Jill–Welcome to gfe but, of course, I wish you’d found my site for other reasons. I sincerely hope that your daughter has tried a few of these strategies already and is doing a bit better. Getting glutened definitely stinks and getting glutened just after starting a new job is especially tough. It’s hard for others to understand just how debilitating it can be. Sending good healing thoughts your daughter’s way!
Shirley
Jill says
Thank you, Shirley! Thankfully, she came out of it yesterday and, aside from feeling completely washed out, the pain is gone. She has been drinking a lot of water, sipping on peppermint tea, and loading up on veggies, fruit and some lean meat. I am thankful to have your site as a resource. I know I will be referring to these suggestions time and time again.
Just a note: We have been going through the “itchies” too and I noted a lot of comments about that. We are trying Cetaphil cleansing wash for sensitive skin for shaving legs and it seems to help, we’ve also found an anti-itch cream that is gf but seems to take the edge off (sorry I can’t remember the name). We’ve swapped laundry detergents and are going to put our dog on gf dog food so our daughter can enjoy puppy kisses (and help more around the house!) 😉
It is SO GOOD to have the support and advice from others! Blessings and good health to you and all who are trying to figure out this complex disease.
Las says
Hey Jill.
About the itching and sensitive skin. Have you tried just using Coconut Oil or even Olive Oil topically? – It’s great as a moisturizer and for anti-itch purposes.
Just make sure its organic, and cold pressed. It’s the next best thing you can do for your skin.
The number one best thing you can do for your skin, is actually to stop washing it. At least stop using soap on areas that dont need it, like arms, legs, chest, stomach, back etc.
This is just what i’ve learned from personal experience, so if it doesn’t apply to you, then that’s fine 🙂
Jill says
Thank you, Las,
I will take any advice on this, so thank you! We haven’t tried either but I’ve been meaning to buy some coconut oil anyway – that’s a great tip.
Personal experience from others is the most helpful because the healthcare people around here don’t seem to know enough about it, or even take it seriously.
Many thanks!
Shirley says
Hi Las–Thanks for helping out Jill with your suggestions. Good coconut oil is amazing stuff for sure! 🙂
Shirley
Shirley says
Hi again, Jill–I’m so glad your daughter started getting better fairly soon. Hopefully, she’s feeling okay now. The yucky thing is that it can take about 6 weeks for gluten to completely get out of *most* of one’s system. It takes more like 6 months for it to fully leave your brain. 🙁 Happy to help in any way I/we can, of course.
I’m glad that you’re getting some helpful info on other issues as well. We feed our dog grain free and not only does it make kissing him and loving on him safe, but it also has made him a much healthier dog with puppy like energy and hardly any skin issues any more. 🙂
Shirley
Delise Dickard says
Shirley,
What a great (and honest) post. We all try, but life must go on and it isn’t always feasible to do what my body wants to do — spend some time on the cool tile of the bathroom floor (that is when it’s bad but it gets out of the system most quickly), go to bed, take a bath (I’ll try the epson salt next time). Ibuprofen is something I learned here and despite it’s dangers it does help. Alka selzer (GOLD has no aspirin) helps A LOT with bloating as does Gas X. I have to keep taking it every 4 or five hours but I wouldn’t mix the aspirin containing type with ibuprofen. Papaya enzyme helps me too in pill form and Glutenaid gets thrown in too.
Once I was on vacation where I could just gorge out on papaya, passion fruit, mango, and pineapple. It did seem to reduce the number of days of discomfort. But it isn’t easy to have immediate access to loads of fruit and okay, it was vacation, so a little rum mixed into the the juice in the evening — might have dulled my memory of the pain.
I do keep a little “gluten emergency” kit in my purse with the all the digestive enzymes (including my favorite papaya), ibuprofen, the glutenaid, gas x, and the alka seltzer. I take most of that as soon as I know I’ve been exposed. It will all wear off in about 4 hours and unless I can do the bath/rest/refresh thing I take another round or two.
In the unfortunate event that I have to speak or be present for an important even I have two prescription drugs on hand — Levisen (used to treat IBS) because it is effective in calming the bowels but I don’t think it stops diarrhea if you’ve been poisoned, and Ondansetron for nausea. I hardly ever use those two because I agree with my body that the gluten should be expunged — I just want to be able to do it politely! 🙂
Shirley says
Hey Delise–Always good to see you here! 🙂 Thanks for sharing so many additional suggestions on this post. I’m sure folks will find them helpful! I’m on vacation and have had to use a multitude of solutions this week. Sometimes the odds are simply against one. 🙁
Shirley
Kimchee says
D-Hist from OrthoMolecular is of great help.
Shirley says
Hi Kimchee–Welcome to gfe! 🙂 I am curious, does D-Hist help because you actually have allergic, histamine-type reactions? Or does it help despite not having such symptoms?
Thanks,
Shirley
Heather says
I fast on liquids for as much of the day as I can then drink raw grass fed milk until dinner. When I am glutened, first night is gastro and strange leg and skin sensations. Up to a week following exposure is suicidal ideology (very scary). Fasting and raw milk stops the brain effects.
Shirley says
Hi Heather–Welcome! Thanks so much for sharing what works for you, but gosh I’m so sorry that you have such severe reactions. 🙁 Your story is truly a good reminder of how gluten can affect one’s mental health though. The raw milk must “feed” your brain properly to stop them.
Shirley
Barbara Blume says
Oh my gosh. I haven’t been glutened in a long time. I took a chance and ate store made sausage. I feel like a fool b/c I know better. I’m in a fog and can hardly read all these remedies but I’m so glad I found this site. Thank you for putting this together. I’m going to share it with my f/b friends that are on gluten-free diets as well. I hope to make my way through some of these suggestions. I’ve only taken my gluten absorbing enzymes (can’t recall the name) and drinking a lot of water. Again, thanks for having put this together. I’ll be back.
Shirley says
Hi Barbara–Welcome to gfe, but I sincerely wish you were here under better circumstances. I’m so sorry that you got glutened and I hope that some of these ideas have helped you. I’m glad you’ve been able to rest today and hope that tomorrow you’ll be feeling much better by the time you have to head out for a while. Thanks for sharing some tips on what has helped you the most. 🙂
Take care. Hope to see you again here when you’re all recovered!
Shirley
Barbara Blume says
I use an amazing magnesium product for other ailments. I’ve decided to try it (it’s a liquid) on my stomach and back area that I know is inflamed and hurts like crazy. Mag.helps alleviate inflammation. Here’s the link if anyone is interested. I’ll let you know how it goes. If nothing else it will help me relax. http://drsircus.com/medicine/magnesium/inflammation-and-systemic-stress
delise dickard says
Three years GF, and from this blog and other sources I”ve learned a few things. Nothing helps everything at once because it is an immune response. So it is like treating the flu, from what I understand. Once triggered, you just have to treat the symptoms for a week or so. Alka Seltzer Gold (its without aspirin) helps with bloating. Take it immediately and every 4 hours after. Ibuprofen, as I’ve learned here, does help with inflammation, back ache and joint pain. Levison, a prescription drug, helps for gastrointestinal spasms, but it doesn’t stop diarrhea. It is what I used for years when I THOUGHT I had IBS. For Gluten intolerance, if I’m somewhere that I can just have a day in the bathroom, that seems to be more effect than drugs that keep the gluten protien in your body. But I keep Levison and other meds in case I’m traveling, etc. Ginger tea instead of coffee helps. I have Vitiligo and it was repigmenting after three months gluten free and six months ago it was going away. Because restaurants made mistakes, I was glutened three times in one month (JULY) and the vitiligo has come back with a vengence. I’m hoping, given time, the repigmenting will begin again. New books are published every day and I am so hopeful that we will get this toxic protein out of our diet! Thanks Shirley…for so many of us you and this wonderfully informative blog you’ve created — are a godsend!
Shirley says
Hi Delise–Thanks for jumping back into the discussion and sharing what helps you the most! While I hate to hear that being glutened recently has the vitiligo flaring up, it’s a good lesson to others on the cause and effect there. I think we’ve got a long way to go on becoming a gluten-free planet (Dr. Rodney Ford’s term), but I cheer each time that someone else goes gluten free and experiences newfound health! I appreciate the kind words, dear, and am still looking forward to your book. 🙂
Shirley
Barbara Blume says
One full day since I glutened and I slept most of it, drank carrot juice, cranberry juice, green tea, had a little millet this morning and plan on having a baked potato. I’m taking a lot of Vit. C, Kirkman Enzym-Complete/DPP-IV is the enzyme I use, and I’m taking Ultracet which I have b/c of chronic fibro pain. I got depressed last night, lots of tears but I know it’s a result of the gluten and didn’t let it get to me too badly. In the past it was a nightmare not understanding what was going on. I have BiPolar II so I suffer depression anyway. But the type of depression brought on by gluten is indeed suicidal at times. I have a dr. appt tomorrow which I tried to reschedule but couldn’t. I’d prefer to stay home and let this run it’s course but I guess I’ll come home asap and resume my rest.
Barbara Blume says
Thanks for the good wishes. It helps knowing I’m not alone. Especially when many people don’t understand the devastation we feel when we’re glutened. I’m going to rest tonight watching nonsense tv programs because I can’t concentrate :-). Thanks again for the help I found here.
Shirley says
Barbara–You are welcome, of course. I do think that knowing we are not alone and seeing the serious effects of being glutened in others really validates our own symptoms and feelings and helps us get through it all. And I agree that watching nonsense tv programs can be very helpful when one is experiencing the dreaded brain fog.
Barbara Blume says
Thank you Shirley,
I’m starting to recover. I think I’ve found, for me at least, that staying away for grains is making a big difference. It’s not easy to do (I love carbs) but yesterday when I ate homemade beef broth & veggies it was the best I’d felt after eating. All other meals had some small amount of gluten-free grain. Learning little by little what works best. Thanks again for the support.
Jennifer says
Soft rice, reasonably watery, with just a little bit of soy sauce or salt. This simple old Asian remedy has helped me after being glutened, but is also the usual remedy after diarrhoea, excessive vomiting, and general dehydration.
Shirley says
Hi Jennifer–Belated, but welcome to gfe. 🙂 I am familiar with rice as part of the BRAT diet–bananas, rice, applesauce, and toast–for recovery from GI ailments, but had never heard of adding soy sauce to the rice. Of course, we all have to remember to ensure our soy sauce is gf now and also that gluten-full toast kept our issues going before diagnosis no doubt 🙁 Thanks for sharing your best remedy!
Shirley
Brian says
I’ve never noticed before if I had any type of food intolerance until this month. I started a new job, which changed my entire sleep scxhedule, I started eating a 3rd meal, breakfast and I guess was feeling a little stressed, so the idea of gaining a little weight and having constipation didn’t seem out of the realm.
i thought I should change my breakfast pb&j to Grape Nuts and ended up eating it for both lunch as well. It’s during this time I started feeling really bloated and it didn’t help my constipation. Then I started noticing my knees and thighs were starting to swell (and stiffen I think because of swelling) and my thighs got very hard. Walking became difficult and tiring.
A couple of questions, are my leg “issues” common for a gluten reaction? Secondly, are reactions harsher with a high volume of gluten? And third, could an “overdose” cause a one-time reaction, or does it just unmask an unknown sensitivity.
Thanks
Shirley says
Hi Brian–First, welcome to gfe. 🙂 Any inflammation issues can be tied to gluten. Many of us experience symptoms like yours, although we don’t necessarily recognize them until we go gluten free and then accidentally get glutened and they become painfully obvious. 🙁 Yes, reactions are usually worse when more gluten is consumed. Last, while folks talk of carb overload and gluten mega dosing, usually those are signs of gluten issues for sure. Note that I am not a medical professional, but rather a volunteer sharing my experiences and those that I’ve seen through gluten-free support group members, friends, etc. Take a look at the Top 20 Reasons to Get Tested for Gluten Issues here and see if you have any other symptoms. You might be surprised, but even if you don’t have other symptoms, I do recommend getting tested for celiac disease. Hopefully, your health care practitioner will be willing to do so or to refer you to another doctor, such as a gastroenterologist, who will. And, of course, don’t stop if you get a negative celiac test result as testing is not as accurate as we are told and those with non-celiac gluten sensitivity can suffer as greatly or more than those with celiac.
Shirley
Jen says
Wow, this is a tremendously helpful post (particularly the comment about Hashimoto’s & ibuprofen)—but mostly because it makes me feel better knowing I’m NOT alone having such a “major” reaction to “a little gluten”. I was glutened twice in June, once outright and the other via cross-contamination, and as I told Shirley, spent the entire month curled up in a little ball of pain, irritation, and frustration (mostly at myself).
Taking it easy is the most difficult part for me—but many celiacs seem to be fellow highly-driven types, so if you all can rest, so can I. 😉 That does seem to help me the most—just giving myself permission to rest, to lighten the load, and let my body heal. Drinking plenty of water and mild (often watered-down) tea helps me, too, and I stick to plain, bland eggs (normally, I soup them up), bland homemade egg-drop soup with grated ginger, and plain yogurt.
Again—just reading that my body reacts so strongly to the stuff is *really* helpful—thanks to all who’ve shared!
Shirley says
Hi Jen–Glad you found this post so helpful. We all have such different experiences yet such similar experiences, you know? Your egg drop soup and other tips sound very helpful–thank you! Hope you can avoid getting glutened again for a very long time! Never again would be nice! 🙂
Shirley
Joan says
I have had celiac diease for about 4 years now and if I get accidentally “glutened”, my reactions are very severe. First I get very bloated (usually right away), then I get nausea and then have violent vomiting & diarrhea for the next 2-3 hours. My last occurrence, I lost 4 lbs. in one night. This has only happened in my 4th year. Before this I only got bloated and nausea and a little Pepsi seems to allieaviate the bloated feeling but I did not get sick. I just don’t know what to expect in the future. I guess it could be worse, I count my blessings.
Jack says
Joan, I did not have a gluten reaction I could identify as such in retrospect until about 3-4 years after diagnosis. Now, it takes very little gluten exposure to make me as sick as you describe. My last exposure, resulting in these symptoms, was a small amount of wheat flour thickening a bowl of soup (I had been directed to the wrong pot!) – the soup was a milky cream of broccoli soup, not thick at all, so likely little flour in my bowl – maybe a teaspoon?
Other anecdotal reports indicate that increasing sensitivity over time after going GF is not uncommon.
Shirley says
Jack–Thanks so much for sharing your experience with Joan. I’m on who reacts to the tiniest amounts, and became more sensitive.
Shirley
Jill says
No matter how careful we are, it seems my daughter gets glutened once a month. It must be a cross-contamination thing – or else the black bean quinoa that I made for the first time the other day was labeled “gluten-free” and wasn’t truly GF… It’s a mystery and so frustrating. With her, it starts with stomach pains that keep increasing, followed by nausea, itching, sometimes dizziness and ALWAYS horrible “knives in the stomach” for AT LEAST 2-4 days. She has to lay on her tummy on a ball to put pressure on the painful area. Sometimes a heating pad brings slight relief. She drinks a ton of water, eats mild food – primarily fruits and veggies or broth and sips peppermint tea. We have tried every gf pain reliever and nothing touches it. Essential oils didn’t help much. Coconut water is soothing – we tried Aloe juice and that didn’t do much in terms of relief. Sleep and time and flushing seem to be the only things. The blankety-blank gluten needs to pass through the system before she really gets any relief. It is just plain awful, no matter how you look at it. 🙁
Shirley says
Jill–I’m so sorry this keeps happening. Scrutinizing “gf” products (and in some cases, buying a test kit and testing them, or at least looking online to see if others have had a reaction) and paring down dining out choices can sometime provide much needed answers. Thanks so much for sharing what works for your daughter, but I sincerely hope such incidents stop happening.
Shirley
Jill says
Thank you, Shirley! I wish nobody would EVER have to go through being glutened. We try to eat whole foods most of the time, but realistically, there are those times when you need to go with some gluten-free convenience foods with a busy family and crazy schedules. It’s very vulnerable feeling to TRUST foods and people who handle them – not knowing how your body will react. I was just thinking about a test kit! I purchased the phone app “Fooducate” that allows for plugging in what foods you need to avoid and scanning products to see if they contain gluten, etc. So far, it’s been a great help when buying groceries! Shirley, thank you for your help and for creating this; it is a great reference for all of us!
Shirley says
Jill–Obviously I haven’t kept up with all the comments here! So glad you all are supporting each other! 🙂 Yes, we are most definitely vulnerable. I’ve heard others talking about using Fooducate. My only concern there is that the info is based on barcode and what information the company has provided, right? So that still does not necessarily protect us from cross contamination issues and the like. I really recommend sticking to whole foods as much as possible and determining a FEW other gf products that work for you. Some products that are supposed to be gf have tested gluten full through the Gluten-Free Watchdog program and I and others react to several of the big name companies with “gluten-free” products. Stay safe out there! Thanks for the kind feedback and supporting others with your replies!
Shirley
Barbara Blume says
Hi,
I posted a few weeks ago after becoming glutened. I am very sensitive and becoming quite sick physically and emotionally. This time I tried the herb Slippery Elm Bark. It coats the intestines and soothes them. It worked like nothing else I’ve ever tried. From the severity of my reaction I thought I would be experiencing symptoms for weeks if not longer. After a day of drinking Slippery Elm three times in the first day I was remarkably able to eat without pain and my emotions began to come back into normal range. I used 4 capsules which I opened and mixed in 8 ounces of water. (it comes in bulk powder as well). I hope this may help someone looking to try another approach to healing from a gluten exposure. Be well!
Shirley says
Hi again, Barbara–So glad your period of being unwell was lessened significantly by the Slippery Elm Bark! Thanks for sharing!
Shirley
Jill says
@Barbara Blume – I’m checking into Slippery Elm Bark! It is certainly worth a try! Gosh, with all of us on this board struggling with pain relief after a glutening, you’d think there would be a “magic bullet” that would help everyone!
Barbara Blume says
Jill,
Here’s an article you may find helpful. Let me know how things turn out if you try it.
http://www.all4naturalhealth.com/benefits-of-slippery-elm.html
Good Luck!!! To all of us.
Barbara
Jill says
Thank you for the link!
John Slattery says
There’s some great suggestions here!
We have been making a tincture formula for the last 4 years we call Gut-Healing/Food Allergy Formula and we’ve gotten a lot of great feedback on it. The gist of it is we’re helping to quickly allay the inflammatory response at the lining of the gut with herbs with anti-inflammatory properties, herbs which are anesthetic to the gut, and relieve a variety of digestive symptoms (bloating, gas, cramping, etc.); Chamomile, Turmeric, Wild Mint, Western Mugwort. And then 2 important lymphatic herbs which really help to relieve stagnation in the lymph system which I believe has a lot to do with the brain fog, tendency to sore throat and other infections, and general torpor. I have used it myself as a daily tonic, prophylactic, and a first-aid remedy.
Proper combining, or pairing, of herbs helps to cover the wide array of impacts felt by those with gluten intolerance.
I also designed a Gut-Healing Tea (inspired by my teacher, Paul Bergner) in order to help heal the lining of the gut while simultaneously relieving symptoms: http://www.desertortoisebotanicals.com/products/gut-healing-tea/
Shirley says
Thanks for the info, John.
Shirley
Michelle W says
Here is some things many may not think of: I’m also severely Dairy Allergic (and I think Gluten sensitive or allergic will find out this week). When I start feeling ill from either or both offenders, I immediately replace my toothbrush! (I buy multipacks at Dollar Tree for freq replacement). That way I don’t risk re-infecting myself! I also drink Rooibos (Red) Tea. It greatly helps with allergy/inflammation/nausea, etc. Ginger tea made with fresh ginger and lemon. Bone broths with egg yolks. (Even tho I eat mostly vegan, I will use powerful healing tools such as Bone Broths and Raw Honey, Eggs, when needed!) Food grade peppermint extract in my water for tummysoothing.
Shirley says
Hey Michelle–Replacing one’s toothbrush is a good idea! And various teas help different folks. Bone broths are great, too. Thanks for all your input. 🙂
Shirley
Amy says
Hi Shirley,
Thank you so much for this article. I was diagnosed when I was about 26 months old and now I’m in my first year of university. I’m finding it really hard to find the right food to eat even though it’s never been a problem before.
It hasn’t been easy adjusting to everything related to university… One night I reached a point where I just wanted to eat “normal food” for dinner. That was a bad idea because I ended up throwing up all night and the next day I slept. I’m afraid of this happening again.
I never know what to do after I’ve been glutened, but ever since I can remember throwing up is how my body gets rid of it.
Shirley says
Hi Amy–I’d say that being gluten free while in college is very challenging for sure. The longer you stay 100% gf and the better you feel, I hope you will feel less and less temptation. Vomiting is one of my symptoms, too, but I don’t always experience it. So please don’t think that you haven’t been glutened/affected if you don’t have that particular symptom. Our reactions can change over time and/or be different for different amount of gluten and different types of gluten I believe. Stay safe! Hugs,
Shirley
Delise Dickard says
Amy,
My daughter just started at a university this year too and she also has to be 100% gluten free or she gets very sick. Her strategy has been to really get to know the people in the kitchen — the cooks and the servers. She’s at a huge school in Virginia so they do have a very small gluten free section in a couple of places but knowing the staff has been key for her. In fact she just mentioned how wonderful the baked goods smelled and in January the school plans to offer gf baked goods. She’s actually gained a much needed 10 pounds in college. So I would suggest you try to find someone in the kitchen who is gluten sensitive, in the psychological sense of the word, and let them take care of you and your dietary needs.
Best wishes
Delise
Magic and Mayhem says
This is helpful advice for my 15 y/o daughter and for me, since we are sensitive to gluten. My 6 y/o son seems to be a true Celiac though (we did not want to put him back on gluten for months to do the biopsy to confirm it, since getting him off gluten got him so healthy and had him finally growing). I realized this week, too late, that a new organic corn flour I had been using must be contaminated, because all of his old medical problems came crashing back… His immune system is shot and he has dark circles under his eyes, his skin and hair is dry from not being able to absorb the healthy oils in his diet, his behavior is out of control, he can’t think or concentrate…. Now I know it will take a month at least for the villi to start to repair themselves and I wish there was a way to speed it up more. I am giving him lots of good supplements for his gut, extra oils and nutrients, epsom salt baths, etc. but if his immune system has bashed the villi in his intestines to bits, it’s not going to be just a few days for him to feel better. 🙁
Lori says
Thank you so much for all the good suggestions. I am experiencing a very severe gluten response. You are all right about milk products. Last night I thought mac and cheese with gluten free noodles would comfort my stomach. I was very hungry from this attack as some of you mentioned. The results of this snack was horrible. I think this is the worst pain I have experienced yet with my attacks. Now I am worried that I may be lactose intolerant too. I hope not. I tried a heating pad on my stomach. It helped some and I finally was able to get to sleep. Just a warning to all of you in case you are tempted to make this mistake. Dairy products only make the reaction much worse!
I have been gluten intolerant all my life including a very unnecessary surgery, but only learned about the gluten free diet about 5 years ago. I’m 70 now, so it’s about time! It has made such a difference in the quality of my life.
I bake my own bread and buy all gluten free products. My husband however still likes gluten and recently made a pie. I guess I got some cross contamination. We tried to be careful, but it’s hard sometimes to control.
I’m off to the store to get some of the products all of you recommended. Thanks again for this site and for your help.
Lori
Emma Hill says
Hi all, I have two coeliac children (diagnosed at 3 and 5 and now 6 and 8) within an hour of ingesting gluten they experience severe abdominal pain and then vomit violently up to 8-10 times till there is nothing left but bile. After that they sleep in exhaustion for up to 10 hours.
Unfortunately the younger child understandably finds it hard not to eat yummy looking food at parties and really pays for it! The only remedy that works for them is sleep and simple foods the next day.
Thanks for this interesting site. Emma
Lori says
I had another gluten attack and decided to try as much of your suggestions as I could to recover quickly. I had tried to purchase something that was recommended above, but it was not available in our health food store. They did have a product called Gluten Guard by TriMedica and the contents seemed similar.
I was entering an attack as my stomach always bloats first as I begin having pain. I decided to take a Gluten Guard to see if it would help. We literally watched the effect as my bloated stomach began to recover right before our eyes. I began to feel better in just a few minutes. It was such a rapid recovery I wonder if it was really a true attack. I’m sure time will tell as I plan to use this product again.
This product worked for me! I won’t go out to eat again without taking a Gluten Guard with me just in case. I feel so much safer now. It’s especially great that I can take it after an attack.
I had also begun the enzymes and acidolpholis (spelling?) daily several weeks before this event. I’m sure they are helping too!
Thanks to all of you for helping me and especially to the developer of this site.
Lori
Shirley says
Hi Lori–This is Shirley, the author of this site. 🙂 I’m sorry that you were glutened once again, but happy that the Gluten Guard product worked so well. Gluten Guard contains enzymes that break down gluten (and dairy) that really can very effective if you take them immediately. That doesn’t mean that the gluten you consumed doesn’t affect your body adversely; it just means your outward symptoms are less. It really can be very helpful to take products like that before we eat out. They help mitigate the risks of being glutened from cross contamination, etc. I’d guess that digestive enzymes and acidophilus are also helping you as well. Thanks so much for sharing your story here!
Shirley
Delise Dickard says
I had a really unusual month of exposure during oct. I was getting sick every third day or so and could not figure out why. After about 4 exposures I was getting severe nerve pain. I couldn’t identify any food item. Finally I realized that I had purchased Estee Lauder Advanced Night serum and they had added a new ingredient. I never had problems before but they said the new ingredient made the product sit on you face longer and made it more absorbent to your moisturizer. I did a google search on it and sure enough the original product contained wheat. Because it never bothered me before, my guess it never reached my threshold until they made it more absorbent and suddenly I absorbed the wheat, Out of habit I only use it when I’m drying my hair which explains why it wasn’t everyday — sometimes I let it dry naturally. It drives me nuts that we have to work so hard to stay well. Its been two weeks and the nerve pain, moved into itching, and finally it is subsiding. Has anyone every had these symptoms? I learn more from this website than anywhere else. Thanks Shirley.
Allison says
Hello,
I get a skin reaction to gluten and it shows up about 3 days after I eat something. No matter how small or large the amount, it always takes a good week to clear up. I take bleach baths once a week to help with my eczema, but is there anything I can drink to help speed up this process? Would a detox diet help me, i.e. drinking hot lemon water?
Shirley says
Hi Allison–Please read the full post and at least skim the comments. A detox diet (including drinking lemon water), movement, etc. all helps get the toxins out of your system and start the healing and resolution of symptoms, like the skin issues you experience. Please know that bleach itself is a chemical and toxic. You might wish to research a better choice for topical treatment. Perhaps coconut oil or skin products from MadeOn (affiliate link–I am a huge fan of their products!), etc. You will learn which of the suggestions here will work the best for you over time. Take notes on what does and doesn’t seem effective for you and reference that when you’ve been glutened. It’s not unusual for us to forget from one incident to another, especially when brain fog takes over. 🙁 Best of luck, dear!
Shirley
Audrey @ Gluten-Free Vegan Love says
Thanks so much for sharing all these tips Shirley (and friends). Very helpful roundup and some things I haven’t tried before (like an epsom salt bath).
The first time I got glutened was one of the scariest things that ever happened to me. I had experienced many health and digestive problems and a doctor recommended I try going off gluten. So I did. A few months later I went out to a restaurant out of town. It was a vegetarian/vegan/raw food kind of place where most was sort of gluten-free by nature. I saw a veggie burger on the menu and the option to order it without the bun. I haven’t had a veggie burger in ages and the wording on the menu tricked me. In my mind = bunless meant a gluten-free option. So I ate it. This was in the evening, and it was a 2 hour trip to get home, and pretty much as soon as I started driving I began to feel ill. I suddenly experienced awful pains in my abdomen, a headache, severe nausea, drowsiness, brain fog, and worst of all, I started to lose my vision = not a good thing when driving alone on a freeway in the middle of nowhere at night… I had to pull over and call my husband and just get him to talk to me until I felt well enough to drive again. I also called the restaurant to ask what was in the patty, and sure enough it had breadcrumbs, spelt, and soy sauce in it. I know it’s my bad for not checking, but I was new to a gluten-free diet then and had no idea someone would put those things in a burger. Needless to say, now I know better 😉
That experience though definitively showed me that gluten was not my friend… And I learned the hard way to meticulously check every ingredient in anything I eat to make sure that doesn’t happen again.
Shirley says
Hi Audrey–Thanks so much for taking the time to leave positive feedback and, most of all, for being willing to share your story with us all. We’ve all been through the “new-to-the-gf-diet” phase where we didn’t ask enough questions or made assumptions. It usually leads to some very tough times and lessons that we won’t soon forget as you’ve shared. That must have been incredibly scary for you and your husband! Even writing about it and remembering probably made you feel ill again. 🙁 It’s pretty amazing how severely our reaction to gluten can be after we’ve removed it and reintroduced it (either intentionally or accidentally). Yet when we’ve been eating it on an ongoing basis before, we have usually had an ongoing level of unwellness with some highs and lows, but nothing nearly as dramatic per se. And if you’d shared your story with anyone who was unfamiliar with gluten reactions, they probably would have “diagnosed” you with many other health conditions, not gluten issues. Again, thanks for sharing. So glad that your doctor got you on the gluten-free path!
Shirley
Delise Dickard says
Hi Shirley and all my gluten free friends,
I was just reading through this thread yesterday wishing all my fellow gluten-free travelers well, and also thinking how long it has been since I’ve gotten glutened. Last night I went out to dinner (always a risk) at a place that typically has safe gf options and I was with a party of eight people — all of them were at this “safe” place just for me.
The place was packed. I ordered gf ravioli, waitress comes back “sorry we are out” ok risotto? “sorry” Each time she has to go back to the kitchen and confer with the cook. Finally I ask “What do you have?” To which she says: “eggplant parmesan?” “Great” One more time she comes back “so so sorry” And finally we settle on chicken parmesan. Otherwise the meal was great fun. As I was changing for bed –there it was –the familiar bloated (6 inch bloated) tummy that is a signal for me to clear my calendar for a few days.
Oddly I wasn’t sick at my stomach all night. I’ve had Barley malt before and noticed that I would bloat but didn’t have the other “regular” symptoms. I tell this story to ask two questions. First, do you notice a difference in symptoms with a difference in the exact culprit — i.e. wheat barley or rye?
And second, do you find it also difficult to recover from feeling like the social outcast? Everyone was fine with the half hour it took for me to get SOMETHING to eat but often my recovery can be coupled with a bit of a “pity party”
Just wondering…as I spend the weekend in close proximity to my bathroom. 🙁
Shirley says
Hey Delise–First, I’m so sorry it’s happened again. It’s so disappointing and upsetting when it does … for so very many reasons. First, for me personally, I totally believe that I react differently to different forms of gluten and far differently to different amounts, but I haven’t quite figured out the exact details. I know that sometimes I immediately react with vomiting, and gut pain and bloating for days. I know that other times, I have a delayed reaction that’s less serious. And as far as which reaction goes with which gluten protein, we’re only talking about wheat gluten and barley gluten here *most* of the time because rye is rarely an issue. Yes, there’s rye bread and there are rye crackers, but most of us aren’t encountering those usually.
Second, I don’t think it’s unusual to have that “pity party,” because you’re so disappointed that it happened again despite all your efforts and you’re feeling crappy. There’s a little voice in your head that asks “what could I have done differently?” and “will this ever stop?” That’s why more gluten-free folks than we’d like to admit stop eating out. The thought of not eating out REALLY depresses me as Mr. GFE and I really enjoy doing that, especially when traveling. Plus, I like to teach folks that they can eat out safely. And so many times we can. Just not always, which stinks. 🙁
One last thought … when I do eat out, I do best when I choose the simplest meals. When I don’t I always pay. Every food dish that you mentioned would be a sort of red flag dish to me because they would be far, far more likely to contain gluten than a simple meal like steak and baked potato, steamed shrimp and veggies, etc. With risotto, the concern is did they really use gluten-free broth to make it? Did they use some seasonings that contain gluten? Did the use a clean pan? Did they use separate utensils? I’ve been told by many restaurants previously that their risotto was NOT gluten free, so generally I avoid it now. Sometimes, rarely, but occasionally, it can be made with gluten-full orzo pasta vs arborio rice, too. And while risotto should never need to be thickened with flour, I am certain that there are some who take that shortcut. I went against my own rules and went with the risotto when on a trip in February because the chef assured me it was gluten free. Two bites later I was in the bathroom throwing up. 🙁 The other dishes you mention, Eggplant Parmesan and Chicken Parmesan, could easily have been glutened, too. Was any flour used? Were any breadcrumbs used? While we’d like to think they’d obviously think of these considerations, I’ve had a chef tell me that regular Panko bread crumbs were gluten free before. He was adamant about it. He said that their dietitian who they consulted with had told them they were. While there are gluten-free Panko bread crumbs available now, those were not the ones he was talking about. We had this discussion AFTER I had bitten into one of his crab cakes made with his gluten-full Panko bread crumbs. That was long ago and I’ve learned a lot since, but without fail, when I veer from my simple foods and dishes rule, I suffer greatly. Something to remember for the future, dear. So sorry about your latest experience. Last, I always take Gluten Defense (or similar before eating out, and again if I feel ill). Always! And I take veratrum album if I have any bathroom issues for sure and usually if I have any issues at all. Check it out. It’s a homeopathic remedy that I always carry with me. Its positive effects extend beyond what its label says, but note that I am careful only to take it once or twice during a 24-hour period. If it doesn’t work fairly quickly after being glutened, it won’t work. I believe that whether it works or not definitely depends upon how much gluten one had ingested. The bottom line is that folks who don’t eat 100% gluten free just don’t really get it. They don’t think of all the possibilities for their ingredients or possibilities for cross contact in their kitchen. The National Foundation for Celiac Awareness did a simple survey with chefs a few years ago. Most of them couldn’t answer the most basic questions on gluten. NFCA reported: “We were shocked to find that 97% of those surveyed – many of whom were already offering gluten-free options – could not answer four basic questions about gluten. More than 50% couldn’t even name all three prohibited grains.” 🙁
Hugs to you!
Shirley
Sherry - Diabetic and Gluten INTOLERANT says
Soooo I am really new to this and Im currently recovering from being glutened by MYSELF. Yeap I said myself. This is because I WAS in denial but not anymore. I am Diabetic (Type 1) and have suffered with stomach issues for many years. I recently got a new PCP and she put the pieces together about me being gluten sensitive. I have been tested for celiac disease and I dont have that but Ive truly got an issue with gluten. My symptoms are abdominal pain, swelling in my stomach, fatigue, weird sensations of tingling (not neuropathy…this is different), headache, sometimes im very hungry even though I cant eat. My stomach hurts so bad that it is tender and sore afterwards. Over time I had realized that when I get sick like this I should only eat mashed potatoes, drink water, gatorade and herbal teas. Green tea and mint tea seem to help. This is a double edged sword for me as I need to intake some carbs and protein to help my blood sugar. Ive recently incorporated green juice (celery, kale and lemon) to help detox me. Also the heating pad becomes my best friend 🙁
Shirley says
Hi Sherry–Welcome to gfe! I’m so sorry you’ve been glutened, but appreciate your input and feedback. 🙂 I’m really glad that your doctor understands celiac and NCGS. That can be huge to getting well. Over time, you probably would have realized that more of your symptoms are related to gluten, but it’s nice to have this group to help you with one’s learning curve. 😉
Take care!
Shirley
Sherry - Diabetic and Gluten INTOLERANT says
I just wanted to add a BIG THANK YOU to everyone for sharing their stories. As I read your posts I am amazed at how many more symptoms Ive dismissed that relate to this issue. I am hopeful this episode only lasts a short time. I can be sick anywhere from 3 to 5 days or more than a week.
Eleonora says
Very helpfull all these comments for someone like me that is new in this situation. It has been three weeks that I am gluten free for the first time in my life. The last 10 years I suffer from the most of the symptoms I read in your message. Chronic constipation, bloating, depression, lethargy, etc especially after eating. I starded eating bread gf incidentally when we couldn’t find wheat bread three weeks ago we bought gf bread and realized that I didn’t feel discomfort like every time I ate it. So I started to avoid food with gluten and to eat gf (pasta, floor..). After two days the diferrence was incredible. I don’t suffer from constipation any more, I am not like pregnant,I feel very light, I can’t believe it. But there are many times I feel like out of the blue. Another one symptom I have all these years is a hoarseness, like every time i want to speak I have to clear my voice which is very annoying . All this situation is very new for me, I don’t know how to deal with. Yes I am very happy because I suffered and now I feel like I woke up from a nigtmare but in the same time I feel an emptiness. I feel very sorry for all these years I live miserable and sick.
Once again many thanks for your help!
Shirley says
Hi Eleonora–I’m so glad that this post with everyone’s comments is so helpful to you and I’m thrilled that you are already seeing so much success from gluten-free living! I sometimes have the hoarseness/sore throat symptom when I’ve been glutened, too, as well as sudden phlegm in my throat. It’s just another way your body is saying it does not want gluten and “fighting” it.
Please know that the feelings you are going through are all perfectly normal. We go through stages that include a myriad of emotions after learning that we need to be gluten free. You might find my post Grieving Gluten: The Five Stages of Loss of Gluten Plus a New One helpful in putting it all in perspective and knowing you’ll get past this stage. Be sure to read the comments on that post, too, because, once again, you’ll find that you are not alone in this.
Hugs to you, Eleonora,
Shirley
ashley says
When I get glutened, I never really know immediately, but the day after it starts with a sore throat, constipation and insomnia…the insomnia lasts for three days or so followed by just being incredibly tired and could literally sleep for 15 hours at a time if I could…this is accompanied by GI symptoms (cramping, bloating, discomfort, inflammation, alternating constipation and diarrhea). By the beginning of the second week of getting glutened I am still exhausted, with achey muscles all over, especially in my neck…the cramping and stomach pain goes away, but I still have visible inflammation, which almost looks like being pregnant, just a super distended abdominal region.
The only thing that really helps is sleeping. I drink about a gallon of water a day, drink tea, eat lots of protein and not much of anything else, avoid dairy way more than normal, up my probiotics and l-glutamine and just kind of wait it out.
Shirley says
Hi Ashley–Welcome to gfe. 🙂 Thanks so much for taking the time to share your experience with everyone. I know that many will see themselves in your comments. I know I do. It’s funny how sometimes my experience is slightly different though. I think it depends on the amount of gluten I accidentally ingest. Sometimes I have to go to sleep immediately for hours, but not always. And while I have some symptoms immediately so I always know right away, other symptoms can appear 24 to 48 later and the recovery period can take several days. The enzymes and some of the other methods (e.g., activated charcoal) really help me, plus I modify my diet, too, so my recovery time can be shortened quite a bit. For that I’m grateful. It took a while to learn those tricks. But the same things don’t work every time. Again, I think it depends upon the amount of gluten and perhaps the type of gluten, too. Thanks again for commenting. May we all never get glutened again! Oh, how I wish that could be true!
Shirley
Meg from South Africa says
I’m bordeline coeliac…and decided to go large and have a gluten free pizza last night for dinner…
which i have now discovered probably had cross contamination. didnt sleep a wink. tummy so swollen within 20min of eating and 12hrs later still look like i could give birth to triplets…and 3kgs heavier.
cant drink or eat anything as it just feels like so much pressure on the gut. Have to figure out a way to help my body get over an attack as quickly as possible.
Have been working so hard on being fit and eating healthy. take one month to lose 4kgs and one night to get it back….HO HUM…how i really hate GLUTEN
Shirley says
Hi Meg–Welcome to gfe! Thanks for sharing your story. So many of us experience the same type of reactions when eating gluten. Purposely eating gluten like that would probably put me in the hospital, as even a tiny amount via cross contamination has me ill for days. Some individuals have even gone into a coma when they purposely ingested gluten (for real, not an urban myth.) The doctor who diagnosed me said that it takes 6 weeks to recover from even accidental exposure. The problem with labels such as celiac, non-celiac gluten sensitive, or the one you’ve given yourself “borderline coeliac” is that they imply that there are varying amounts of gluten that can be tolerated by these groups of individuals. In my opinion and many others, the reality is that that’s just not the case. If one has an issue of any kind with gluten, it just needs to be removed from one’s diet. Completely. I’ll translate your “I really hate GLUTEN” to “Gluten is evil.” That’s the way I feel about it so I don’t let it into my life. I hope you heal quickly and stay strong and 100% gluten free for the future. Oh, and try my Flourless Doughless Pizza. It’s awesome. You don’t have to give up great pizza to stay gluten free. (Read the comments on that post if you need convincing.)
Shirley
Mary says
Yes, gluten is evil, at least to my body and system. Here’s how I’ve decided to describe it:
Gluten is my kryptonite.
I use Gluten Defense and/or GlutenEase whenever I think I might get some cross contamination. I totally agree that it has to be a 100% removal of gluten for those that are truly sensitive to gluten. It usually takes me a full five days to recover (functionally) from being ‘glutened’ but GlutenEase and Gluten Defense have helped tremendously with prevention and with recovery. It’s an immune system response and not just an upset stomach like with lactose intolerance. The two intolerances are NOT similar in their physiologic responses.
Anyway, welcome to all the new folks and best of luck and success to all on this GF journey. TO HEALTH!! 🙂
-Mary
Shirley says
Hi again, Mary–Yes, and we all have different names/labels for what gluten is or is to us. I kind of prefer thinking of it/describing it as rat poison as most folks understand that label instantly (even visibly recoiling when they hear it) and understand that no amount is acceptable. I also appreciate you pointing out the difference between one’s gluten response and having an upset stomach if one is lactose intolerant for example. I wish more folks would understand that. If they did, it could potentially stop the “just eat a little this one time; it will be worth it” guidance from others.
Like you, I am proactive about protecting myself. I take Gluten Defense whenever I eat out or at a food function where there might be gluten. Then if I do get glutened, I have a whole arsenal of treatment techniques including more Gluten Defense, detoxing using things like activated charcoal capsules, etc. Sometimes the exposure is less and/or the treatments work so well that I’m minimally affected but other times, it’s days of misery that follow. A big 🙁 on the latter. That’s when one knows for sure that gluten is evil.
Thanks for taking the time to comment again and share your story/thoughts, Mary!
Shirley
Mary says
I do really appreciate having this thread here, Shirley, and still getting notifications as it’s updated. I started with Gluten Defense and then in an emergency I tried GlutenEase and was surprised at how effective it was. I think it has more enzymes (higher level) than Gluten Defense.
I still have my fully stocked arsenal for detox treatment and call in all the troops when I need to do so. I’ve really started becoming much more vigilant about being proactive, though. Once the gluten is in my body, my immune system has already gone into full gear and the full body inflammation has already started and takes forever to return to ‘normal’ levels. So, as annoying as it is to take my anti-kyrptonite pills before every possibility of contamination, it is WELL worth it to me.
Be well everyone!!
Shirley says
I’m so glad, Mary. We all have such different perspectives and experiences despite our “common ground” that I am very grateful we can share here, too. Son uses GlutenEase most of the time. Comparing their labels right now, it does look like GlutenEase has more of the enzymes, but it’s hard to compare them as the units used are not exactly the same … well, as far as I can see. Oh, I totally agree on being proactive! I don’t take any chances but, like you, I sure like being prepared in case I’m blindsided. Thanks so much for your input! Stay safe out there!
Shirley
Charlotte says
Hello! I’m only very recently self diagnosed ceoliac, dairy intollorent and egg intollorent! I say self diagnosed because I had the blood tests and they came back negative as I had already cut gluten out my diet! I went to see a specialist and he told me the only thing they could do was an endoscopy after is eaten gluten for 6 weeks! I considered it but refused to as I got to the point if I’d eaten anything I was intollorent to I couldn’t eat or drink without bringing it all back up again! The things I’m doing at the moment is drink lemon and ginger tea…fresh or store bought! I used to have peppermint but now that doesn’t help! I also eat pineapple before a meal to get the digestive enzymes in first! The problem I’m finding is that I’ve just had 3 weeks of heaven, no peobs at all but when I ate gluten free pasta…..death! I thought you could trust gluten free brands??? Also has anyone had any infertility problems as I really want children but have read can cause issues! Fantastic to know so many people happy to share their advice for people, makes you not feel so isolated!
Charlotte says
Ok now I’m confused, wrote a whole message that’s disappeared!!! I’ll try again!
I’m a newly self diagnosed ceoliac, dairy intollorent and egg intollorent! I say self diagnosed as I had the blood tests but they came back negative as id already cut out gluten! The specialist told me that I had to eat gluten for 6 weeks before an endoscopy but after consideration I devided not to as id reached the point if I ate anything that I was intollorent to I couldn’t eat or drink without bringing it all back up and walking was agony! I drink lots of lemon and ginger tea now… I used to have peppermint but now I can’t touch it! The problem I havebis I had 3 weeks of heaven but I ate gluten free pasta once and…death! I thought you could trust gluten free brands??? Has anyone had fertility problems? I really want children but read that can have issues! I also have lots of red dry patches appearing that won’t go so I’m hoping its not the skin disorder associated with ceoliacs! Lovely to have so many share their advice, makes you feel less isolate! Hopefully I’ll soon be able to share my own tips! I find rice sits wonderfully!
Shirley says
Hi Charlotte–Welcome! FYI, your comment didn’t disappear; it was simply in the “moderation queue” waiting for my approval. (That process helps keep yucky spam at bay.) As your comments were slightly different, I approved both. Thanks so much for sharing your story with us. Many have gone down exactly the same path you did. Resuming eating gluten to “possibly” get a positive test result is something most folks choose not to do and I totally agree with them. As I was just saying to Meg, even a tiny amount of gluten has me ill for days, so there’s no way I could survive a gluten challenge (the name for the resuming eating gluten phase after being gf) either.
That leads me to respond to your other comment. The answer to your question is twofold. No, you can’t trust all “gluten-free” brands and some of us are far more sensitive than the less than 20 ppm level that is considered acceptable and that most companies’ products are. I say “most companies” because there are a good number of brands that are certified gluten free by third party agencies and they ensure their product is less than 10 parts per million (ppm) or in some cases less than 10 ppm. Testing is considered accurate to less than 5 ppm, but most companies will only state that they are less than 20 ppm. However, the kicker is that in the U.S. brands are not even required to test their products to ensure they are gluten free as labeled. I subscribe to the Gluten-Free Watchdog, which has a monthly fee of $4.99 and is always testing products to see if they are, in fact, less than 20 ppm. Most products they test do test gluten free, to less than 5 ppm, but not all so my subscription has been very helpful to me and all their subscribers. But as GFW can’t test every product on the market (although they are diligently working on that!) and I am super sensitive, I’ve just learned which products I can’t tolerate (no matter how they test, if they’re certified, etc.) and mostly stick to real food that’s naturally gf. Focusing on real food is the basis of my gfe approach and really makes gf living easier, tastier, healthier, and no more costly than gluten-full living.
I’m happy you found this post so helpful, Charlotte. Hopefully some others will reply to your infertility query, but, yes, infertility/complications with carrying a child to full term/gynecological issues are all often associated with celiac/NCGS. One main cause for infertility/pregnancy and birthing issues is the malabsorption issues which cause vitamin/mineral deficiencies that don’t support pregnancy. Many, but not all, find that once they have been gluten free for a while, they resume absorbing those key vitamins and minerals and can get pregnant and have a successful full-term pregnancy.
Best of luck to you on your recovery, dear, and thanks again for taking the time to comment with your story and tips on recovering from being glutened,
Shirley
Charlotte says
Hello Shirley, thank you for reply so quickly! I didn’t realise that it was a case of there’s only so little gluten in the food rather than completely free! That’s a fantastic tip as I now know to look out for that on the packaging! It’s mazing the mood difference when in gf, makes my boyfriends life much easier!
Best wishes,
Charlotte
Shirley says
You’re welcome, Mary, of course! But to be clear, you won’t find that specific ppm info on product packaging exactly. You will see a symbol for certification and then can check out what level that organization certifies to. For example, the Gluten-Free Certification Organization (GFCO) certifies to less than 10 ppm. However, I’d be remiss if I didn’t mention that the Gluten Free Watchdog’s testing has shown that even some certified gluten-free products have tested glutenFULL at 20 ppm or above. Certification organizations certify a company’s processes and testing, but they are not testing each product themselves so even certification is not foolproof per se. The best gluten-free companies are the ones that are certified AND testing all of their products to ensure they meet the standards. So we still have a ways to go on all this. One company that produces allergen-free bars (Zego) has every batch tested by a third-party organization and publishes a code on every single bar so that you can look up the specific testing results. I love that! Anyway, I wish it were all simpler. I like simple and I like staying completely gluten free, so I prefer to limit the products I consume and focus on real food that’s naturally gluten free.
Stay safe and happy!
Shirley
Meg says
Hi Shirley
Thanks so much for your reply. I have, since my attack gotten things under control only to have it happen again after being super careful.
Unless you are preparing your own food you cant really assume there is no cross contamination.
That being said, I will be doing a 7 day juicing plan to reboot my system and take the pressure off. Cleanse the gut. I did get some digestive enzymes which have helped me so much with getting over the reaction quite quickly.
So just wanted to say thanks so much for your reply! this site has helped wonders for me!!
Shirley says
Yes, Meg, that’s true regarding safe food. And you’re welcome regarding my earlier reply, of course, and sorry for the delay on this one (I’m blaming the holidays!). Last, I’m so happy that gfe has been so helpful to you! I truly appreciate your kind feedback. 🙂
Happy New Year!
Shirley
Charlotte says
Hello,
I was just after some advice! I have been really strict leading up to Christmas and during christmas as I was terrified of being ill and not being able to enjoy time with my family! However, somehow I have had a severe reaction to something even though I’ve been so careful to keep gluten free and I had to go straight to bed after work yesterday, even drinking makes me feel sick! I keep thinking maybe I should eat gluten for 6 weeks and have an endoscopy just to get an answer (keep thinking maybe it’s not gluten and I’ll be fine!!!) but then on the other hand I don’t know if I can go through the pain! Would you suggest sensible to have one done or keep going as am? I’m tired of being ill every other week!
Thank you,
Charlotte
Shirley says
Hi again, Charlotte–I hate that you got glutened and has such a severe reaction. 🙁 I can offer you some thoughts, of course, but I can’t really offer you advice as I’m not a medical professional. You will have to do the research, seek the guidance of your medical professionals, and decide if you want to do the gluten challenge. The gluten challenge means eating gluten daily for a period of time (and the amount and time period depends on the guidance from your doctor). The first obvious question is if you get this sick from one gluten exposure, how sick will you get if you’re consuming gluten daily? The second question is what will be different if you get a celiac diagnosis after this period of time? You will have to be 100% gluten free. Isn’t that what you’ve already realized you need to be anyway? To be clear, I think folks should be tested for celiac before going gluten free. However once they’ve gone gluten free, I think that the gluten challenge is dangerous because of the symptoms/reactions gluten causes and the fact that other autoimmune conditions can be triggered when gluten is reintroduced. In addition, there are not that many cases where individuals test positive for celiac on the gluten challenge after going gluten free. The small intestine starts healing the moment that one goes gluten free. In most cases, there’s enough healing so that celiac testing is negative. Those are my thoughts, Charlotte. Best of luck in general on all and on deciding how to go forward!
Shirley
Charlotte says
Hello,
Thank you very much for your reply, you really have helped! That is the one main thing I am scared of how much pain it will be to go through 6 weeks of eating gluten and if indeed I’ll be able to keep eating. The one thing that you have really made me aware of is that the gut starts to heal straight away, very interesting. I’ve decided not to have it yet but I have an appoitment with my specialist in May so if I can’t keep things under control by then then I will have it done!
Many thanks and Happy New Year.
Charlotte
Colleen Krispin says
When I get glutened I often get pain around my ovaries presumably due to leaky gut, sometimes I get extremely bloated. Either way I suffer a few days of typical abdominal distress and IBS. My main go to remedy for the pain as well as gas and bloating is peppermint oil capsules. Peppermint or ginger tea helps followed by digestive enzyme capsules and Kefir.
Shirley says
Hi Colleen–Thanks so much for sharing your personal experience, as difficult as those memories can be. I’m so glad that you’ve found some treatment options that work for you! I know others reading will benefit from your tips for sure. 🙂
I don’t think I’ve ever officially welcomed you to gfe. I appreciate you being here!
Shirley
Lisa says
Hi Shirley,
I have a bottle of Nature’s Way Activated Charcoal, but was wondering if the Bulletproof is better in some way? Thanks!!
Shirley says
Hi Lisa–I’m not versed at all on the differences. I can only refer you to Bulletproof’s page here explaining the differences between their activated charcoal made from coconut shells and other brands made from wood. I hope that info will help some. I will add that I am a huge fan of the Bulletproof brand, but I have not tried the Nature’s Way brand. If I find any additional info, I’ll send it your way, of course.
Shirley
Isabella Tugman says
I’ve found that drinking kombucha is the best thing after a gluten attack. After gluten ingestion, I get very thirsty and tired, so I take that as a sign to rest and hydrate as much as possible.
Shirley says
Hi Isabella–Welcome to gfe! 🙂 Thanks so much for sharing your recovery tips with everyone. Drinking kombucha makes sense because of the probiotic factor and resting and hydrating with other favorite liquids is the key to getting better for all of us I think. Thanks again, Isabella. Hoping that none of us get glutened again any time soon. Well, I really hope that none of us EVER get glutened again!
Shirley
Mary says
I was glutened a few days ago and this is what helped me. First I began drinking plenty of water and I took 1 tablet of Ibuprofen (helps with inflammation), then I made a large cup of double strength chamomile tea (2 tea bags) – I felt almost immediately better. Then I made a light chicken soup with gluten-free noodles in a broth made with 1/2 chicken bouillon and 1 large crushed clove of garlic (I removed it once the soup was done). I also ate a toasted piece of gluten free bread. This soup really helped me. Then about 3 hours later I started feeling sick again and I made an additional double strength chamomile tea and that did it. I rested and the next day I was back to my normal self. I hope this helps others who have been glutened. God bless.
Shirley says
Hi Mary–First, welcome to gfe. I appreciate you being here! Second, while I’m so sorry that you were glutened, thank you for sharing your experience and what worked for you with others. I know that everyone will be grateful. We can’t have enough remedies and yours sure sounds not only healing, but soothing and delicious!
Shirley
Kelly says
My daughter (now 9) was diagnosed as ceoliac at age 5. I feel like we have learnt so much over these past few years. We have a ‘swap it out’ system that we use so that she doesn’t miss out on treats at school or parties and feel the need to refuse and then explain to everyone why. Instead she gratefully receives an xmas lolly (eg) and brings it home where i will swap it for a safe equivalent. She has a good understanding of her dietary restrictions and although it gets her down at times she would rather miss out occasionally than feel how she did before!
Being ‘glutened’ doesn’t happen often but when it does it is a severe reaction. Usually within an hour she will get stomach cramps and then start vomiting for a few hours. Then continual stomach ache for a few days and looking transparent! She was accidentally ‘glutened’ just a few days ago and it breaks my heart to see her so sick with little to no options to make it better, which is when i came across this article. I have definitely picked up a few ideas to remember for that inevitable ‘next time’. My thanks to you and to everyone who commented.
Now to find a cure for mummy guilt for next time !!!
Athena Kosmach says
Tested neg for celiac. I am highly gluten sensitive for the past 15yrs. It only takes 15 minutes tops to have symptoms of feeling quite full to unzipping my pants. Also sensitive to modified food (not corn) starch. Not often but when im hit bad…its 3-4 days of constipation and bloating w belly pain that makes me moan thru the night. I massage my belly, and drink tons of water and walk. Also take ibuprofen for pain and swelling.