November 11th, 2011
HONOR Your Body: How to Recover After Being “Glutened” (i.e., Gluten Exposure)
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.
Today’s post shares my own best remedies for being glutened and input from many other gluten-free bloggers. 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 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 recently 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.”
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 (Glugle Gluten Free) ~ “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 (Gluten-Free Steve) ~ “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 and Nutrition) ~ “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 (The Daily Dietribe) ~ “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 (The 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) ~ “The main things that I do whenever I believe that Kurt or Conner get 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’d love for all of you to share what’s helped you feel better after being glutened with us, too. But I have one more thing to mention that you will find really helpful for detoxing any time (e.g., after being glutened, after flying, after overconsumption of food or drink, or on a daily basis). It’s the new e-book that I shared the other day—a collaborative effort with some wonderful bloggers for the charity, MitoAction. This e-book, Eat Fresh and D-Tox Your Life, contains recipes for smoothies, juices, and soups, and more.
I hope you’ll find all these tips and ideas helpful. Please share your own remedies to recover from being “glutened” in 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.)
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Comments
134 Responses to “HONOR Your Body: How to Recover After Being “Glutened” (i.e., Gluten Exposure)”
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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.
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
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.
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
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!
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
Hey Christine–Thanks for the reminder on checking ingredients and the alternative suggestion.
Shirley
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.
Christine–Thanks for adding this perspective and info. Will definitely check out it out.
Shirley
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
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
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
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!
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
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
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
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!
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
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
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
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.
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
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!
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
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
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
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!
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
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.
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.
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))
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
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
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
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
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
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.
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
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.
Thanks, too, for these suggestions Christine. I haven’t heard about Yoga in Bed, but it makes perfect sense.
Shirley
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!
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
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.
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.
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
What a great post Shirley and so helpful to so many. You are the BEST!
xo,
c
Hi Carol–Thank you! You always make my day!
xo,
Shirley
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!
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.
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
So, so helpful! Thank you will share this one for sure.
Thank you, Lexie! I hope this combined post and response will “grow” and help so many.
Shirley
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.”
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
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
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
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! !
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.
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
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!
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.
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
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
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
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
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?
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
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.
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!
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
**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.
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
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.
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
Great post Shirley! Thanks for putting this together. It’s a great resource for people
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
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
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
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.
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
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!
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
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!
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
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!
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
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.
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
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.
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
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.
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
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.
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
I take ibuprofen and stick to liquids for 1-2 days.
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
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
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
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.
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
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
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
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
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
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.
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
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.
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.
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
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!
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
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.
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.
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
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
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
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.
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
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.
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
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
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
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!
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
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
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
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,