How Hard Is It? A Short, Sad Story


Soon, I’m going to share some fun and enjoyable information on my recent trip to the Biltmore Estate and Asheville, North Carolina. However, right now, I want to share a story—really more than one—that has been on my mind A LOT lately. (I’ve included a few of my Biltmore photos that seem to fit this discussion.)

At one of the outdoor concessions at Biltmore, I asked the server about the brand of hot dogs. She didn’t know, so she called over her manager. After the usual gluten Q & A repartee, he said the hot dogs were Hebrew National. I told him that I was pretty sure that Hebrew National hot dogs were gluten free (I remembered reading about their gluten-free status on Alison’s site—Sure Foods Living). But I still asked him to check the packaging. He disappeared for several minutes before returning. He stated that the only allergen ingredient listed was soy. Ideally, I would have liked to have read the label myself, but he hadn’t seen wheat on the label and it was very unlikely that hot dogs would contain rye, barley, or oats (which are only safe if certified gluten free). And, like I said, I remembered reading that Hebrew National hot dogs were safe, so I ordered the hot dog with no bun. Of course, I asked that nothing touch the hot dog, that he pull one from an unopened package, etc. The manager donned plastic gloves and served the hot dog himself. As we were chatting, he remembered that Biltmore Estate food service had changed to Hebrew National a while back specifically because of their gluten-free status. He also told me that Biltmore’s Stable Cafe had a gluten-free menu and that the Bake Shop there was also developing a gluten-free menu. (Those are food service spots right beside the Biltmore House itself. It’s my understanding that other restaurants on the property are also gluten-free friendly.) That’s great news and progress, for sure; I was thrilled to hear about it!

But the more compelling story took place while I was waiting for the manager to come over and later for him to check the hot dog packaging. When I had told the server that I had allergic to gluten (yes, that’s what I say for simplicity sake), the gentleman standing next to me asked, “Do you have celiac?” While I was never officially diagnosed with celiac disease, I said yes … again, for simplicity sake. He went on to say that his wife had celiac and another family member had celiac as well. He said he knew exactly what I was going through and that being gluten free wasn’t easy, but it was getting easier.

We talked about the diagnosis rate and why so many people still remained undiagnosed. (He agreed that with no drug approved to treat celiac, neither doctors nor patients are properly informed.) I told him that I was a support group leader and had a blog and handed him my business card. Then he said something that made my blood run cold. He stated that his wife was on a new drug for other issues and was now eating gluten with “no problems.” I know I visibly reacted to this news. I suddenly felt ill hearing this information. I told him that gluten is still doing damage even if one doesn’t have symptoms. He said, “Well, she has so many other things going on, that’s the least of her problems right now.” So I said, “There are many, many symptoms and issues related to gluten ingestion. What kinds of problems is she having?” He said, “Oh, things like broken bones.” Gosh, frankly, it was everything I could do not to go berserk (if only in my head) and start pleading with the gentleman to get his wife to eat gluten free. But, I said as calmly as possible, “Broken bones, osteopenia, are osteoporosis can all be related to celiac and gluten issues. Those are largely a malabsorption issue, which is caused by celiac damage. One isn’t absorbing the vitamins and minerals one needs to maintain bone density. So many symptoms can seem like they are not related to eating gluten, but they most likely are if one has celiac.” I also shared that I had previously been diagnosed with osteopenia, but my bones were normal now after going gluten free, eating calcium-rich foods, taking a good quality supplement, and doing weight-bearing exercise. I emphasized that being gluten free (and, therefore, finally being able to absorb the proper vitamins and minerals) was the critical factor though. He seemed to acknowledge what I was saying and was actually really sweet telling me to have a great time in Asheville and to eat safely.

As I was walking away, I heard this gentleman talking to the manager, urging him and Biltmore to be informed about gluten and serve gluten-free food because he had two family members with celiac. Honestly, I wanted to tell this gentleman the following story that was very fresh on my mind, but I couldn’t bring myself to do it. (I’d said enough at the time. I’d given him my card, etc. He knew what my thoughts were.) I’m not even sure I should share the story here on gfe, but I simply must.

Short, Sad Story

Mary (not her real name) was diagnosed with celiac 6 years ago. She ate gluten free for 6 months, but then decided that sticking to the gluten-free diet was way too hard. So, she resumed eating gluten. She had various symptoms, but “dealt” with them versus resuming eating gluten free. About 5 ½ years of eating gluten after her celiac diagnosis, Mary was diagnosed with intestinal cancer. The cancer had already metastasized throughout her body. Three weeks later, Mary was dead.

I am not interested in “shock blogging,” so please know that this very sad story is true and I’m sharing it for educational purposes. Mary’s story was shared with me by a gluten-free friend. Mary was the best friend of someone in her immediate family. My friend had actually mentioned this person with celiac who continued to eat gluten quite some time ago. She agonized over her loved one’s friend putting herself at such great risk. Knowing the devastating effects of gluten from her own experiences, she had tried to gently advise the family friend whenever they were at gatherings together (and always shared the wonderful gluten-free food she had brought to such gatherings), but she finally had to let the appeal go.

Both the encounter with the gentleman at Biltmore and Mary’s story are haunting me. So my question today is how hard is eating gluten free? Is it harder than cancer? Is it harder than dying? If you think I’m being melodramatic here, I am not. Mary’s case is by no means an isolated one. Untreated celiac disease (i.e., living gluten free) can result in death through conditions like cancer, pernicious anemia, and the like. Children with “failure to thrive” and other serious celiac-caused issues are particularly vulnerable. They can actually starve to death because of malabsorption issues if a diagnosis is not made in time. This story shared in a syndicated doctor’s column has also haunted me. Even if one doesn’t die, the severe symptoms can ensure a life with very poor health, one medical ailment after another (even other autoimmune diseases; the risk of being diagnosed with another autoimmune conditions after celiac is much higher—34% if one is diagnosed over the age of 20), limited physical activity, and more. If you’ve been diagnosed with gluten issues of any type, gluten should be off the table—literally. Metaphorically speaking, continuing to eat gluten after knowing that you have celiac/gluten intolerance/gluten sensitivity is like choosing to live in the darkness, when the light is right there for you.

The topic of continuing to eat gluten after a celiac/gluten intolerance diagnosis comes up on other blogs from time to time, at my support group meeting, and even on Facebook and Twitter. It’s been reported that a large percentage of folks—I’ve heard 40%—cheat on the gluten-free diet. Anne (Gluten Free Musings) shared this post a while back on her conversation with someone who admitted that they cheated. Those of us who are gluten free and have participated in the “cheating” discussions have been shocked and appalled that anyone with gluten intolerance or celiac would continue to eat gluten, even if it’s only an occasional cheat. But it seems this is a far too common occurrence, and it’s unlikely that the folks cheating are going to pipe up in these discussions and say, “Oh, yeah, I cheat.”

Studies have shown that it’s only a tiny amount of gluten that continues to cause damage. On the celiac segment that Dr. Oz did on his show with Elisabeth Hasselbeck and Dr. Peter Green, Dr. Oz cited 1/8 teaspoon as the amount that could do harm. However, most of us who are gluten free will tell you that we react to far, far less than that. My doctor (she, herself, has celiac) says that it takes 6 weeks to visibly recover from accidental gluten ingestion and 6 months for it to be completely removed from the brain after ingestion. An occasional cheat would keep that cycle going … potentially forever. Setting aside the greater mortality rate caused by celiac (and a major cause of death in those with celiac is cancer) and an even higher risk due to continual gluten ingestion, without gluten entirely out of one’s system, one can’t really appreciate how well one can feel being 100% gluten free. With the continual gluten ingestion, there is continual unwellness. Those of who eat totally gluten free know what a tiny amount of gluten can do to us, but folks who continue to get some gluten don’t necessarily have that dramatic reaction. Mr. GFE always says that to appreciate the view from the mountain top, you have to walk through the valleys sometimes. I always think of that saying when I get accidentally glutened and suffer for days. Oh, how I love the view from the mountain top and how great my body feels when there’s not an iota of gluten in it. But, I don’t think the folks who cheat came close to the “view from the mountain top” experience. They are stuck in the “valley,” with continual unwellness, so cheating in this situation would not have the same obvious, disastrous effect. Plus, there’s the opioid effect of gluten that Ron Hoggan, D. Ed., mentioned in his post on 20 Things You Should Know About Gluten. If one keeps eating a small amount of gluten, one continues to want gluten. As he states, “the harder it is to follow the diet, the more likely you need to avoid gluten.”

One of the reasons that I started this blog was to show the folks who are struggling with eating gluten free how easy it can be if one looks at the gluten-free lifestyle another way—the gfe way.  It doesn’t matter why one is struggling, whether it’s the cost of the gluten-free specialty products, the undesirability of some of the gluten-free products, the feeling of being excluded by family and friends, etc. What matters is that one finds a way to easily navigate the gluten-free waters, so to speak, so one can be healthy and happy. Are you cheating because the gluten-free diet is too difficult? Try the gfe way, focusing on real food and dishes made up of largely real food that are naturally gluten free or dishes that can easily be made gluten free through different methods (e.g., flourless baked goods) or easy substitutions (e.g., chicken nuggets, fried oysters, and the like breaded with other easily found, inexpensive, and delicious breading choices). Some mainstream processed foods that are safe can be incorporated into one’s dishes or diet with the gfe approach, and a few gluten-free specialty items that one has found to be helpful can also be used. This approach can be employed both when eating at home and when eating out. We hear the word “sustainable” a lot these days. The gfe way of eating gluten free is sustainable. If you’ve been struggling to be 100% gluten free, again, I urge you to try this approach. I want you to be a healthy and happy gfe reader for a long, long time. If you have had gluten issues and have not been 100% gluten free, step away from the darkness and move into the light, enjoy the view from the mountain top … whatever analogy you choose to use for your move to your new lifestyle, please just do it. If you need more help, please share your comments below as to your particular struggles, email me, reach out to another blogger, etc. You have to make the choice to be gluten free, but we can help you find your way.

There’s great info elsewhere to help you make the gluten-free lifestyle change, too. For example, inspired by Jamie Oliver’s Food Revolution, Diane is hosting 30 Days to a Food Revolution on her blog, The W.H.O.L.E. Gang. Thirty food bloggers (including myself) will offer posts with tips and recipes for making the transition to real food. Hopefully, Jamie will even join in! (Be sure to tweet him @jamie_oliver and ask that he join Diane’s event!) The series starts Monday, April 26; be sure to join us there.

This post is linked to The Gluten-Free Lifestyle Blog Carnival

Not just gf, but gfe!

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98 Responses to “How Hard Is It? A Short, Sad Story”

  1. Vicki W on April 16th, 2010 12:35 pm

    I am not only gluten intolerant but I am also allergic to dairy, eggs, tomatoes, onions, beets, basil, grapes, asparagus and I am currently testing for soy. Yes, it’s a little difficult to find food but I do it. I’m with you, I’d rather be symptom free than suffer even a little every day. If someone thinks living gluten-free is difficult then try eliminating dairy, eggs, tomatoes and onions with the gluten. It’s hard work but so worth it. Here are SOME of the problems I have CURED with these changes to my diet: chronic interstitial cystitis, migraines, asthma, fatigue, joint and back pain, digestive issues, eczema, rosacea, mood swings, hot flashes. I would have given up all of those foods to have eliminated the migraines and asthma. I feel like I won the lottery to have found a cure for all of the others!

    • Shirley on April 17th, 2010 8:54 pm

      Hi Vicki–Although we’ve touched base on Twitter before, I think this is the first time you’ve commented here at gfe, so welcome. :-) Your comment is priceless. Yep, getting ready of those issues without surgery, meds, and other interventions is indeed like winning the lottery. So many continue on battling all those issues to no avail because they haven’t figured out the food connection or don’t want to. The interesting thing is that your issue list is very similar to mine. I was so amazed and relieved when the interstitial cystitis disappeared. One day, the urologist’s nurse had gotten angry at me for showing up at his office again with what I thought was yet another bladder infection. She practically threw a brochure on IC at me and said, “This is what you have and you’re going to have to learn to live with it.” Needless to say, I didn’t go back to that office, but I went to another urologist and through scads more misery and testing before I was finally diagnosed as gluten intolerant a year and a half later. Relief from IC due to the gf diet came pretty quickly. Never was gluten mentioned as a possible cause.

      Thanks so much for taking the time to comment, Vicki. Congrats on your upcoming corporate life retirement–that is awesome! :-)


  2. Kim on April 16th, 2010 1:00 pm

    What a sad story!!! :( It is so hard for me to understand someone not following the diet b/c I wouldn’t even consider it! I know that everyone is different, but I want to live my life as long as I can and if eating gluten-free helps keep me healthy, then that is how I will eat.

    Beautiful pictures!


    • Shirley on April 17th, 2010 9:01 pm

      Hi Kim–Yes, I know what you mean about having difficulty understanding it. I can understand one having a hard time giving up something like say treats when they know they don’t make them feel their best, but the gluten issue is just so black and white to me. It’s taboo. You just can’t do it. As one of the Jenn’s commented below, there is no safe amount, it’s like eating a little bit of rat poison. And, I don’t think any of us would do that. Thanks for adding your viewpoint!


  3. Celiacs in the House on April 16th, 2010 1:02 pm

    Very well put, Shirley and most excellent photos. I am working on a post about the effects of malnutrition one of my kids is facing after a round of tests and doctors appointments this week. Even without cheating, we still are dealing with those years of misdiagnosis or no diagnosis.

    • Shirley on April 17th, 2010 9:08 pm

      Hi Wendy–Thank you very much. I’m so sorry one of your kids is having issues like that. I hope you’ll get some answers and a plan to move past those problems. I’ll be looking for that post.

      Going gluten free doesn’t always solve all the problems that gluten has caused and in most cases, certainly not right away. So seeing that the folks who eat gluten free can still have serious issues, how can one continue to eat gluten? It’s like playing a version of Russian Roulette to me. Dr. Peter Green has said that he doesn’t think that most who are diagnosed as adults ever fully heal. But, we can sure increase our odds of a long happy healthy life by eating 100% gluten free.

      Thanks for commenting and sharing some of your own family’s history.


  4. Wendy on April 16th, 2010 1:07 pm

    I will never eat Gluten again! Never! I wish others understood the severity of what they are doing.

    did you go to Posana’s Cafe while you were in Asheville? Oh please say you did! It’s 100% gluten free! and the owner’s are wonderful!

    • Shirley on April 17th, 2010 9:17 pm

      Hi Wendy–Thanks for sharing your feelings on the subject. I’m with you. I wonder if things will be different when most individuals with celiac or gluten issues are diagnosed. I have to wonder what guidance these folks got from their doctors. As a support group leader, I can’t begin to tell you some of the horror stories that have been shared with me. For example, one member was told by her doctor that eating a little gluten every now and then wouldn’t hurt her. The same doctor also told her she could eat spelt. He was a neurologist who was seeing her for some lingering issues after her celiac diagnosis. Ironically, his brother is diagnosed celiac. In addition, her family doctor had told her before her diagnosis that he didn’t think she had celiac and he wouldn’t recommend that she go gf if she did. Another gf friend told me the story of a lady she knew who was just diagnosed celiac and her doctor said, “Good luck.” and sent her on her way with no further info or plan to see her again. These cases, which I would certainly call malpractice and criminal, happen all too frequently.

      Stay tuned for the Posana review! :-)


  5. Jenn on April 16th, 2010 1:47 pm

    omg Shirley, what an incredible story, and I’m so glad that you decided to share it. This NEEDS to be told to so many people, especially the newly diagnosed who think it’s too much trouble.

  6. Lori on April 16th, 2010 3:10 pm

    I never cheat on purpose anymore. In the very beginning when I was still trying to figure out if I had a problem with gluten, I cheated a couple of times with severe reactions both times. Now I never cheat. My son never cheats, either. He is just praying that we found out his problem in time for him to “catch-up” to his peers in size (He’s in the 5th percentile right now). He has a friend who said he “used” to have celiac disease but now is better with no symptoms, so he eats gluten now. I got very upset when I heard that. I will have to talk to his mother as soon as I have an opportunity where I wouldn’t seem too pushy.

    • Shirley on April 17th, 2010 9:31 pm

      Hi Lori–Welcome to gfe! :-) I plan to check out your blog, Lori’s Gluten-Free Cafe, when I get a second. I’m a firm believer that there can’t be too many gf blogs, and I love that yours is dairy free, soy free, and mostly sugar free, too. Since my son figured out that he needs to be gluten free, too, he has eaten 100% gluten free. There have been accidental gluten ingestions and they severely affect him. BTW, he grew an inch taller in the last year and he’s now 22, so the earlier one goes gluten free, the more likely the growth is to occur.

      That’s a hard situation with the friend who eats gluten now. I hope what you share with her will make a difference. Sometimes the best we can do is be an example and serve wonderful gf food that everyone loves, but watching others go down that path is very frustrating to say the least. Folks sometimes think they have “outgrown” issues (and in some cases, doctors have indicated they could), but more than likely the particular issues they’ve had before have now disappeared and are replaced by new ones, which they don’t see as gluten issues. And, worse, maybe they don’t have any visible symptoms for a while, but serious, silent damage is being done to their body and suddenly an extreme condition, like cancer, might manifest.

      Thanks so much for sharing your story.


  7. Jenn on April 16th, 2010 3:27 pm

    Powerful post. I always say that eating gluten, for me, is like eating a little bit of rat poison.

    • Shirley on April 17th, 2010 9:37 pm

      Hi Jenn–Thanks so much for commenting. I feel the same way, and I think that’s an excellent way to put it. None of us would knowingly put rat poison in our bodies, because it’s clear of the harm that would do. Acknowledging the harm gluten does should be the same.


  8. Nance on April 16th, 2010 4:26 pm

    I don’t have celiac, nor any health issue that precludes me from eating anything I like, so I feel very fortunate. (Aside from the occasional migraine caused from drinking wine too close to bedtime!) I do understand, however, the mystified feeling of knowing someone with a life-threatening illness who, despite that illness, chucks it all and eats something “bad” for him. My dad was severely diabetic, yet he would sneak candy and other things that he knew would compromise his health. He also had a heart condition and high blood pressure, but when my mother wasn’t vigilant, he poured on the salt and slathered on butter and sour cream if it was in the house. It wasn’t easy to be a babysitter for a man in his seventies who should know better and, ultimately, SHOULD HAVE CARED!

    I suppose what I’m trying to say is that there are underlying issues at work many times for the Cheaters. Food is a powerful force: for comfort, for reward, for pleasure, for lots of things. And sometimes, it just wins.

    • Shirley on April 17th, 2010 9:48 pm

      Hi Nance–Thanks so much for sharing your own experience along these lines. I agree that food can represent many things and I certainly see it in myself knowing that I do better with no dairy and no sugar, but not having a diagnosis that precludes those (and, therefore, continuing to eat them). However, it is hard for me and many others who are gluten free to understand those who cheat with gluten though. It’s much more black and white. It’s not guidance that one should only indulge now and then (as might be the case for some diabetic patients, certainly not your dad if he was severely diabetic); it’s that one should NEVER, EVER indulge. And, those of us who are celiac/gluten intolerant all know (as many have shared here) how severely we are affected by even the tiniest amount of gluten. And, those are the effects we see. So we wonder what other harmful things are going on that we cannot see. It’s all pretty compelling evidence for us to stay gluten free. Jenn’s comment on a little bit of gluten being like a little bit of rat poison sums up my feelings.


  9. cindy on April 16th, 2010 6:00 pm

    I just read this fantastic blog story – may I have permission to reprint parts of this and post it on my web page and in one of my monthly newsletters? I specialize in GF, CF, Sf and Sf (sugar and soy) and couldn’t have said this any better! I and two other gf women are teaming up to teach cooking classes and teaching about the qualities of the foods/herbs being used in each dish – (I am soooo tired or hearing, “but what can I eat if I can’t have my bread?”. Thank you for this! I love your web site.

    • Shirley on April 17th, 2010 9:56 pm

      Hi Cindy–Thank you and welcome to gfe! Please feel free to share my words as long as you give credit and link back (or share my website). I’m happy that you think your clients will find my words helpful. :-) There is so much more to life than bread (although now there’s even good gf bread LOL), isn’t there? Kudos to you and your team for educating others. I admit I struggle with the other evils you’ve mentioned, so I’ll look forward to checking out your info. Many thanks for taking the time to comment and for your kind words regarding my site!


  10. Fatcat on April 16th, 2010 7:27 pm

    There’s a child at my church who I suspect has gluten issues. She’s got some kind of undiagnosed skin condition, has lost 20 pounds, has stopped growing and is the same age and once the same size as my son and now is about 8 inches shorter than him. (I know kids vary, but this has been kind of drastic in the last year or so). I can’t convince her mom to take me seriously when I mention celiac/gluten testing. She is treating the skin problem with tanning beds and the continual diarrhea with Imodium.

    • Shirley on April 17th, 2010 10:05 pm

      Hi Fatcat–So nice to see you here at gfe again. It’s painful to just hear about the child you describe and how her symptoms are being treated. The height and other issues sometimes cannot be reversed if gluten issues are the cause and go on untreated. So many folks won’t take celiac/gluten issues and testing seriously. If it came from their doctor, they’d be more likely to take it seriously, but with 95% of those with celiac undiagnosed, it’s just not happening. I wonder if you might find an article about children’s symptoms of celiac and pass it on. I sincerely hope that this time she’ll listen. Thank you for pursuing the matter and sharing here today.


      • Fatcat on April 30th, 2013 9:42 am


        The mom of this little girl is convinced. She got diagnosed with Crohn’s disease, hospitalized, went into the ICU for 2 weeks and the mom asked about gluten free to the doctors. One of them said he had heard something … that it might help, but probably not and that it wouldn’t hurt. She tried it and the symptoms cleared up. Of course, they thought it was the Crohn’s medications. Then they went on vacation and let the girl eat whatever she wanted and all the symptoms came back with a vengance, DESPITE still being on the Crohn’s medications. They came to me and said ‘you were right” and now she’s gluten free for life.

        Now I have one other person I need to convince that I know what I’m talking about.

        • Shirley on April 30th, 2013 1:34 pm

          Hey Fatcat–It’s so good to see you again and to find out that your daughter is doing fine now living gluten free! So very inspiring! Yes, please keep educating and sharing with others! Big hugs to you and your daughter on having to go through that ordeal though. I’m going to share this on my gfe FB page later if you’re okay with that. Oh, one question, is she on meds as well as being gf?

          Thanks again for sharing, dear!

  11. Cara on April 16th, 2010 7:27 pm

    Thank you for sharing. I am not gluten-intolerant, but I know plenty of people who are, and as someone who is interested in food and cooking I love sharing with them my knowledge and ideas for eating gluten-free. I’m certainly no expert, but much of what I cook and eat just happens to be gluten-free anyway, and because I’ve spent a lot of time with one particular friend who has celiac and enjoys cooking, I’m attune to many of the ingredients. Along with that, I hate seeing people (with any sort of problems) not taking care of themselves. It’s so sad to me. You might not believe it (coming from someone who CAN eat gluten)but I always get a little giddy when I see a new gluten-free product, or like today when I happened to be in a discount grocery store and saw a whole section of gluten free products, it made me so happy that these items were accessible to people of all socioeconomic situations.

    I think you are doing wonderful things, and I’m sure there are many people learning from you!

    • Shirley on April 17th, 2010 10:14 pm

      Hi Cara–It’s wonderful that you are tuned into what’s naturally gluten free and rejoice for those of us who are gluten free! Gluten-free products can be transitional foods for folks who have been diagnosed, so I’m happy to hear that your local discount grocery store had them, too. We used to have one that often had Notta Pasta and Larabars, and it was a great thing for many. Teaching folks the joys of real food and dishes made from them is the best thing though. That way they don’t go into a panic when the store doesn’t have gf products and they can survive just about anywhere. My life is just so much simpler not relying on gf products. Last, thanks so much for your very sweet words. I truly appreciate them. That is why I started gfe, so getting such feedback means the world to me.


  12. Michele on April 16th, 2010 7:35 pm

    I will be gluten free for 1 year on April 30th, never once have I cheated! I was on my way to the grocery store when I got the call from my dr, I started right then. It’s a life sentence not a death sentence! Why would anyone even consider cheating?! Disturbing…

    • Shirley on April 17th, 2010 10:18 pm

      Hi Michele–It’s almost your one-year anniversary–congrats! Thanks for sharing your path to being gluten free and your perspective. I love that … life sentence! As far as the story I shared, I have to agree … disturbing. I can’t think about these two individuals—one now gone and the other one on that path—without being disturbed.


  13. Erin Elberson on April 16th, 2010 8:39 pm

    So glad you posted this. It needs to be said, repeatedly. Avoiding gluten is not an inconvenience. It’s a medical necessity. And it can be a path to a more fulfilling, nutritious way of eating.
    Nicely done.

    • Shirley on April 17th, 2010 10:25 pm

      Hi Erin–Thank you. You’ve stated the case very well and succinctly yourself. I think individuals will be surprised at everything that will open up to them if they heed the need to be gluten free.


  14. Casey M on April 17th, 2010 1:54 am

    Yes, I’ve met people who say they eat a little gluten. Personally, I can’t understand it since I’m ill for days if I do, but what I can’t understand even more is someone hurting their health on purpose. We’ve been GF (and numerous other allergic foods free) for 10 months now, and my son is inching his way on to the weight chart. Maybe because the improvement can be slow some people give up, but the alternative is so much worse! I suppose we can only do as you did, and continue to educate :)

    • Shirley on April 17th, 2010 10:32 pm

      Hi Casey–Thanks for taking the time to comment and sharing your own family’s experience. How wonderful to hear about your family’s success and your son’s progress thus far! We are a society that wants instant results, but it’s amazing how quick the improvements seem when we are looking back. I remember thinking that progress was painfully slow, but then quickly taking the new lack of certain symptoms for granted. Yes, we have to keep spreading the word and setting the example. People only listen/change when they are ready. We might catch them on a day they are ready, and then a whole new beginning!

      BTW, did you get my email about the Ron Hoggan materials giveaway? Let me know if not and I’ll resend.


  15. Theresa on April 17th, 2010 5:36 am

    Wow, I’m so going to recommend reading this post to people who just don’t “get” the G-free diet. Your comment about the view from the mountain top is so great! It’s such a great encouragement to stay strong in eating G-free and make your way to the top of that mountain.
    People keep encouraging me to cheat and eat gluten, it doesn’t hurt me so much because I know what will happen if I do [valley here I come] but I am always filled with such sadness for the people who give in and eat whatever it is. So I end up giving the person who pushed me to cheat a huge lecture! haha!

    • Shirley on April 17th, 2010 10:45 pm

      Theresa–It’s so annoying to have people try to get you to cheat, isn’t it? They just don’t get it. As I was saying in another comment, it’s not like other medical conditions where certain lifestyles are encouraged more often than mandated. In general, our society has little recognition of how much food impacts our health. As Edison said, “The doctor of the future will give no medicine, but will interest her or his patients in the care of the human frame, in a proper diet, and in the cause and prevention of disease.” We’re not there yet, but we can all aspire for ourselves and hope that we’ll get there.


  16. H.Peter on April 17th, 2010 8:43 am

    Brutal post.

    Re: Real food. It will take a generation at least to turn our country around. People have been trained for teh last generation to eaty, crap, it will take another 20 years to ween us uff these habits of convenience.

    J.O. series made for a good TV show, but it will take a massive grassroots effort to turn the ship.
    Teaching kids how to cook would be a start….

    • Shirley on April 17th, 2010 10:56 pm

      Hi H.Peter–Thanks … I think that’s a compliment. ;-) This is a brutal post. Summarizing that woman’s life in that way felt horrid, yet that was appropriate given the circumstances and the info was accurate. But, I still feel badly about it and this story will continue to haunt me.

      I agree it will take a massive effort to affect, well, the masses, but making a difference in even one person’s life, even one family’s life, is worthwhile. The grass roots movements for real food are happening every day. If Jamie (and everyone who has signed his petition!) gets the menus changed in cafeterias across the country, that will be phenomenal. Data came out just recently that after changing the menus in the UK, that test scores improved across the board. Real food feeds brains and the results showed that. :-)

      Yes, teaching kids to cook real food can have a domino effect. Those who eat gluten free, of course, have a critical need to learn to cook.


  17. GFree_Miel on April 17th, 2010 10:54 am

    That is so horrifying that someone would just decide it’s too hard to be gluten free and hurt themselves like that. I admit, when I was first diagnosed, I did cheat a bit. But to be fair, I wasn’t told all of the symptoms by my gastro because he didn’t know enough about the disease (though I was lucky enough that he knew to test me). I had to find out everything on my own. And after doing my research, I completely stopped cheating.

    Thank you so much for sharing both of these stories. It’s so important that people become aware of what gluten is doing to their bodies.

    • Shirley on April 17th, 2010 11:02 pm

      Hi Miel–Yes, I agree … it’s horrifying. I’m glad you shared your own story and the fact that your gastro did not properly educate you. I understand what you mean about being lucky that he knew enough to test you, but how sad that is, too. We are so far behind in the diagnosis of celiac in this country that we feel lucky if we get tested. But, bravo for you for doing your own research and finding your own 100% gluten-free path!

      We must keep spreading the word, so folks can make the right decisions. Thanks again for taking the time to comment and adding so much to the discussion. :-)


  18. Melanie on April 17th, 2010 2:04 pm

    The was an excellent post. I’m bookmarking it to show my daughter, who cheats. I have never knowingly cheated. Just the few times of having cc and getting sick was enough. I worry to death about her cheating.

    I find it interesting what you said about how the cheating makes you want more gluten. I think that’s so true. For me, it’s been over 3 years and I have no cravings what so ever. Maybe it’s ones attitude that helps as well. I try not to fall into the trap of feeling sorry for myself and always try and be happy with what I have and not dwell on what I don’t.

    Interestingly, I just met a lady who found out she had celiac because of bone issues. She had no other symptoms at all and was very lucky to have a doctor smart enough to test her for it. Celiac has so many hidden symptoms.

    • Shirley on April 17th, 2010 11:18 pm

      Hi Melanie–It’s nice to see you here at gfe. :-) I just wish we were discussing a happier topic that didn’t keep us all worried. I sympathize greatly with your concerns for your daughter. Son kept eating gluten for a few more years after knowing that he shouldn’t. I saw him sick constantly, experiencing mood swings, not being able to sleep, etc. Finally, he came to the decision on his own that he had to be gluten free. He ate four subs in one day (not an unusal occurrence for a college student) and had disastrous results. I was sorry that he suffered from that event, but in the end, it was a very happy day for me. I hope your daughter comes to that decision soon, too. They do have to come to the decision of their own volition and then own it, so to speak. Then they will be 100% gluten free without our concerned reminders/pleas.

      Yes, attitude is very important. I think it’s such a waste of time to think that we’ve been deprived and to feel sorry for ourselves on an ongoing basis. I’ve had someone say to me, “Well, it’s clear you’ve accepted it; I haven’t accepted it.” This was 4 years after her diagnosis. I know we go through the initial grief and that’s perfectly normal, but as Erin said above, going gluten free really opens up a more fulfilling, more nutritional diet. We finally really “see” food and not take it for granted. I’ve learned to eat many new and wonderful foods since going gf.

      Thanks for sharing the story on your acquaintance, too. At the larger GIG group I belong to, our former medical advisor, a gastroenterologist who specialized in celiac, said that osteoporosis was the most common symptom of older women whom he diagnosed. And, it was osteoporosis at the age of 46 that led to a diagnosis for one of my group members.

      Thanks, Melanie!


  19. Alta on April 17th, 2010 4:15 pm

    Wow. Just…I just don’t know quite what to say. While I was never diagnosed with celiac (my blood tests back in 2004 were negative, and I didn’t have the biopsy), now that I’ve been gluten-free, while I’m not completely healed, I already feel so much better. Moreover, I am sensitive to the slightest amount – which makes me wonder how other celiacs can possibly cheat! I feel sick for weeks after cross-contamination issues – I can’t imagine going back to how bad I felt before going gluten-free just to enjoy a gluten-filled treat. Not to mention the long-term effects. But yet I meet people with other diseases all the time that continue to do damage to their body – people with COPD that still smoke, diabetics that eat candy by the truckloads, etc. These are people that either feel it’s too hard to comply with what’s best for their bodies, or don’t feel like they’re “living” if they have to live with restrictions. But you adapt! It becomes no different than other activities for most of us, after a while. And the tradeoff? It’s invaluable. Shirley, thanks so much for posting this information.

    • Shirley on April 17th, 2010 11:30 pm

      Alta–I know … it’s so shocking and sobering to hear that people are continuing to eat gluten and, also, to see a “case study” of the ultimate possible outcome when one continues to eat gluten. So many of us hear are saying the same thing, that we can’t imagine continuing to eat gluten based on our own horrid responses to even accidental ingestion. I can only think that these folks never were totally gluten free and were on a continuum of feeling poorly. I think folks often think they are the exception, that “it” won’t get them. I’ll never forget after Yul Brynner died from lung cancer that his pre-recorded informercial aired telling folks not to smoke. I wonder what Mary would say to folks now, how she would live her life differently. As I said in my other replies though, the gluten or no gluten issue seems far more black and white to me than other issues, like avoiding sugar, for example. I get that other foods and ingredients are also harmful, but gluten is just completely forbidden. But, yes, we can adapt in amazing ways. I’m taking your suggestion and soaking some slightly dried up dates in milk right now to make sweet milk for a recipe to avoid traditional sugar. :-)

      Thanks very much for your input, Alta.


  20. Sarah Schatz - menus for limited diets on April 17th, 2010 4:40 pm

    Great discussion and blog post. I can completely relate to what you’re talking about – on both sides. For years I knew I was allergic to wheat but I didn’t know how much it was affecting me so I kept eating it in “moderation”. I didn’t know I was sensitive to all gluten until a couple of years ago,at which point I finally gave up all wheat and gluten.

    I am now on GAPS so my diet is even more strict than some but it is helping me even more than even being gluten free. I feel like I am on the top of the mountain top you’re talking about but I also know it’s not an easy journey to get there.

    I only wish people could get a glimpse of what their life could be like if they were finally able to eliminate the foods that are causing adverse reactions in their bodies.

    There really needs to be more education on how much food REALLY affects us. Maybe then people might realize why they have so many physical, mental and emotional problems.

    I’ll stop there but I too am very passionate about this subject. thanks again.

    • Shirley on April 17th, 2010 11:44 pm

      Hi Sarah–It’s so nice to see you again. I just wish it was a happier topic that we were discussing. Thanks for sharing your own history a bit. What you’ve shared makes my point exactly … we can’t realize how greatly gluten is affecting us while we continue to eat it.

      I’m not completely familiar with the GAPS diet, but I love hearing how fabulous you feel on it. And, great analogy on getting to that mountaintop in some cases. As you and others have shared, going gluten free only without other food limitations can seem easy. BUT, the results are worth it. When food alone can solve these problems and that’s so often the case, it seems like an obvious choice, but so many folks dismiss this concept. We’ll keep pursuing this topic with others and doing our best. I greatly appreciate your passion and your comment!


  21. Gluten Free Steve on April 17th, 2010 9:02 pm

    It’s amazing what some people will accept and won’t accept when it comes to their health. The thing to remember is we are all in charge of our own health, and while it’s hard to imagine someone not following a gf diet when they need to, you can only control yourself. Great article, Shirley.

    • Shirley on April 18th, 2010 12:05 am

      Hi Steve–Thanks for the kind words and stopping by to comment. You’re absolutely right, of course. We can’t be in control of others’ health or their actions if they need to be gluten free. The best we can do is offer them the information, and per some of the comments here, maybe in some cases that will be the critical factor for them. As some have shared, their doctors didn’t make the need for a 100% gluten-free diet clear. After we share the need for compliance and the possible consequences though, the rest is up to the individual. We can support them and show them how to be gluten free, but we can’t do it for them.


  22. Renee on April 18th, 2010 1:15 am

    Shirley –
    Thanks for the great post. It is so painful to hear of situations like both of these. But you are right where you stated above in one of your comments to someone else that all we can do is give people the tools to do the right thing but we can’t force them to do what is right for their bodies. I have struggled with this too. You can only say so much sometimes and sometimes you can’t say anything.
    I have a friend who was diagnosed with celiac back in the late 70′s but was told she grew out of it. Now her daughter is having problems, physical and behavioral, and they have decided to go gluten free at home…I have explained to her many times that she is damaging her body and now her daughter too. She owes it to her daughter to at least check it out. But no, she is in major denial about it all. Yes, they may be going ‘mostly’ gluten free at home, but what good is that? I don’t understand it. Sometimes you have to stop mentioning it even though inside you are screaming!!!
    I think you stated this all very well, thank you.

    • Shirley on April 18th, 2010 4:18 pm

      Thanks so much, Renee. These situations can be very, very difficult. Mostly we have to play it by ear and be ready to offer the right info when folks are willing to listen. You are right that being “mostly” gf is as bad as eating all gluten. That’s one of the biggest misconceptions we have to fight and correct. Only that tiny amount mentioned continues to do the damage and produce symptoms. And, it’s hard for those folks to recognize or acknowledge the symptoms and, frankly, they usually have doctors backing them up, calling the issues everything but “gluten” ones. I even had a health care professional insist that her patients to get off gluten, but still continue to eat it herself. She’d say, “I do alright with a little bit now and then.” But, she was wrong. The fact was that she was very moody, antagonized patients, and often looked and felt poorly.

      BTW, welcome to gfe and congrats on your brand-spanking new blog, Beyond Rice and Tofu! :-)



  23. Kelly on April 18th, 2010 11:42 am

    Wow…. Yesterday returning home from a pediatric conference I gave my dinner candy to a collegue because it was a brand I was unfamiliar with. My friend who is the manager for a pediatric/maternity unit and ICU and Emergency in our hospital remarked that I never seemed to cheat. I likened cheating to a person with peanut allergy eating peanuts or choosing to eat poison. I told her it was a “no-brainer”. It saddens me when I hear people “cheat” when they have Celiac. It is not cheating, it is choosing to hasten your death.

    • Shirley on April 19th, 2010 7:48 am

      Hi Kelly–Looks like you are new to commenting at gfe—welcome. :-) I think the peanut allergy and poison analogies are effective ones. I’m glad you shared them with your friend, particularly given her line of work. Folks seem to “get” those. And, I couldn’t agree more. If we went into anaphylactic shock (like those with peanut allergies) when we ate gluten or keeled over from “poisoning” folks might not ever cheat. But, the fact is the disastrous results are pretty much the same, whether one has an instant reaction or not. And, sadly, I think the discussion on the parts per million (ppm) safe level doesn’t help that any. Even if it’s a tiny amount, folks think there’s an acceptable level of gluten, so they just eat “a little more occasionally” perhaps. I’d like ZERO gluten, thank you very much, so real food works the best for ensuring that’s what I get. Thanks so much for taking the time to comment, Kelly. It’s a sobering conversation for sure.


  24. Gluten FREE foods ROCK on April 19th, 2010 8:08 am

    I will never understand why anyone would cheat. Sad story.

    BTW Shirley you won the caveman cookie giveaway on my blog. Please email me.

    • Shirley on April 19th, 2010 5:38 pm

      Hi April–Thanks so much for sharing your perspective. I can’t understand cheating on the gluten-free diet either. It seems the majority of us feel that way, but I’ve heard figures as high as 40% quoted for those who cheat, so it’s a big problem. One lady told me that when she goes to visit her mother a distance away at the nursing home that there’s nothing she can eat that’s gluten free. I kept mum, but there’s always something to eat, always. It might be not be what you’d normally make a meal of it, but there’s always something gluten free … usually real food like fruit and veggies, and I’m happy to eat that. And, if there truly is nothing to eat gluten free, then I simply won’t eat. But even vending machines carry some gluten-free foods … not items you’d want to eat often, but they’ll do in a pinch.

      I’m excited about winning the Caveman cookies! Thank you for letting me know! While I’m not a big consumer of gf specialty products, I like the info on those cookies and would like to share them with my group. :-)


  25. Kay Guest on April 19th, 2010 9:45 am

    Shirley, Thank you so much for this very serious post. As you know, my English husband has lived with celiac since 1957. Since so many more people are now diagnosed with celiac and other gluten related issues, he has had questions from quite a few folks. When we see these same people later, almost ALL of them tell us that they don’t think the GF diet is for them and they only follow it loosely. We are stunned by this casual attitude and wonder what their doctors are telling them. So, thanks again for this post and please know that we, my husband and I, are grateful for the great information that you always provide.
    Kay Guest

    • Shirley on April 19th, 2010 6:18 pm

      Hey Kay–Thanks for sharing your experiences and thoughts. The situation is very troubling, isn’t it? As I shared in other comments, I do think there are a lot of issues with what many doctors tell their patients when they are diagnosed. I’ve found their comments/direction to be reprehensible in some cases. It’s the doctors who are gluten free themselves, who are the most convincing. Thanks to you and your husband for listening to these folks who are starting out on or not complying with the gf diet and offering what guidance you can. I truly hope that many of the latter will have an epiphany not too far along the road before irreversible damage is done. I don’t think anyone thinks the gluten-free diet is for them initially. But, then a gluten-free diet works its magic over time and even the tiniest accidental gluten ingestion reminds one that yes, gluten is a big issue.

      Thanks for always taking the time to comment. I truly appreciate it.


  26. Linda on April 19th, 2010 10:21 am

    I’m grateful that I react to such small amounts of gluten because it keeps me from being tempted. I honestly don’t know if I would be as strict as I am if I didn’t react so easily.

    Your stories are very sad. I once spoke to a woman whose dr. told her she could eat gluten while she was pregnant. Indeed, her symptoms went away until the baby was about 6 months old, but I can’t believe there wasn’t damage going on.

    A friend of mine has had digestive issues for a while. I told her to get tested, but the doctor wouldn’t do it and she didn’t push it. Just recently her dad was diagnosed with celiac. Finally, she is going to see a different doctor and get tested.

    Dr. Fasano’s prevalance study did a lot to help spread awareness, but there is still a long way to go. Thanks for a very interesting post.

    • Shirley on April 19th, 2010 7:02 pm

      Hi Linda–Thanks for being so honest. I know you are not alone. And, the fact that many of us react so severely is why I think our condition is very different from some other medical conditions where folks can “cheat” and not feel such immediate harsh effects.

      You’ve shared another story of very shocking, criminal medical guidance. These doctors should be reported for malpractice, because that’s exactly what such direction is. I’ve heard that pregnancy can “protect” the mother from experiencing symptoms from several medical conditions. But, like you I don’t believe that damage was not occurring.

      Your friend’s story was interesting to me because it demonstrates how symptoms can change over time. You said she had digestive issues for a while. I suspect that she went on to have other symptoms, but is not aware of them being related to gluten or they are silent for the time being. And, the fact that her doctor wouldn’t test her is again malpractice. If she should develop intestinal cancer from untreated celiac, would that be grounds for a malpractice lawsuit? I’d say so. It’s not that I want her to have celiac, but so many are undignosed as we all know. I’m glad she’ll be tested. If her dad has celiac, one can be sure that others in the family have celiac or non-celiac gluten issues.

      Yes, Dr. Fasano’s study was groundbreaking … now if we could just get those folks diagnosed! And, the more compelling thing about that study that is not often mentioned is that the prevalence rate was established from blood tests alone. Per my understanding, it was decided it wasn’t practical/financially feasible to do biopsies on all the folks who tested positive per blood tests. Yet, still today, folks are not considered to have celiac unless they have both the blood test and the positive biopsy–that gold standard which leaves many undiagnosed and out in the cold.

      Thanks so much for taking the time to comment and share so much.


  27. Leah on April 19th, 2010 12:41 pm

    Thanks for this post, chilling though it is. I’m a longtime lurker, first time commenter and I love your gfe approach.

    As far as I know, I don’t have celiac, but I’m eating gluten free because I’m on the anti-candida diet. As such, I also no longer eat any dairy, any form of sugar, any nightshade vegetables, soy, yeast, or alcohol. And I’ve never felt better. (I’ll have to go through some elimination/testing once I’m through with this diet, to determine whether gluten is a sensitivity for me for the long term.)

    Sure, it’s a limiting diet, but I’ve never knowingly cheated either because I know the misery that awaits me if I do eat forbidden foods. I read the following story somewhere in my internet roaming. It was said about my diet, but it applies to anybody who has to limit foods, and it helps me.

    At a Christmas party, a woman with a limited diet was told, “Oh, go ahead and cheat a little! It’s Christmas! Have a cookie.”

    The woman responded, “Well, I don’t want to feel sick at Christmas either.”

    • Shirley on April 19th, 2010 9:59 pm

      Hi Leah–Welcome to gfe officially. So glad you decided to unlurk. ;-) Special thanks for the kind words on my gfe approach!

      You have my admiration for following the anti-candida diet. I was on it for about 6 mos after going gluten free. I lost a good amount of weight with no effort at all and felt pretty amazing all the way round. I’m thinking I need to find my way back to the ACD and have been doing some research again.

      Yes, my story is chilling. I hated sharing those results. Your story echoes how many of us feel about cheating. I appreciate you sharing it … it is very helpful for illustrating the point.


  28. Jess on April 19th, 2010 3:47 pm

    Wow. Great article. I was diagnosed with Celiac over 2 years ago after 10 years of thinking I had IBS. I continue to “cheat”. Your post is a big wake-up call. Thank you.

    • Shirley on April 19th, 2010 10:07 pm

      Hi Jess–Wow … I’m so glad sharing these cases had an impact on you. Thank you for being so honest. I’m sure your comment will help others in a similar situation.


  29. erin Rogers Pickering on April 19th, 2010 4:01 pm

    Excellent excellent article!!!!
    I have never cheated in the 2 yrs I have been gf… and get frantic if I think I am exposed to even small amounts, or cross-contamination. My mother died of stomach cancer at 48, her mother at 64 – I am not taking those chances.

    • Shirley on April 19th, 2010 10:11 pm

      Hey Erin–Thanks very, very much. I’m sorry that you have such a tragic family history. My heart truly goes out to you. While many folks would not associate your history with celiac, it’s wonderful that you have taken your health into your own hands.


  30. Chelsey on April 19th, 2010 11:05 pm

    I can’t beleive the nerve of that guy, talking so casually about his wifes condition as if it was completely unrelated to celiac. I understand your pain in hearing his words. I guess the only thing you can do in a situation like that is pray that God will show them the ‘light’ and that she will come into healing in a gluten free lifestyle.

    For me eating gluten free has been easy. My friends and family are well aware of my GF needs and even cook things especially so I can eat them (Thanks heavens!) SO I don’t usually feel left out, and even if there is something I can’t eat I know when I get home I can make a gluten free equivalent.

    Whenever I eat wheat I feel hung over the next day, I get this fog that makes me grouchy, and I get a lot of pain, I wouldn’t ordinarily have when GF. It is definitely motivation to keep me away from wheat.

    This is a great article Shirley. Thanks for sharing some of the darker truths of cheating while being celiac/gluten intolerant

    • Shirley on April 20th, 2010 11:31 am

      Hi Chelsey–I really think the gentleman didn’t realize “what was what,” so to speak. I mean I had to wonder more about the situation afterwards. Clearly, this medicine that she was taking was prescribed by her doctor. Did he know she was celiac? Or was it a different doctor, unaware of her complete history. One just can’t know. He genuinely seemed surprised when I told him about all the other symptoms. Often I think people are diagnosed celiac based on one problem (or set of problems) and don’t realize everything else that is related. And, if you read all the comments here, you’ll see lots of shocking stories re: doctor’s lack of knowledge or, should I say respect, for celiac. Like you, I really hope that she will reconsider her actions soon.

      I love that you’ve shared your view of eating gluten free and are so positive about it. You are such a healthy eater anyway and that really translates to easy gluten-free living. :-) But, more importantly, staying positive is critical. There’s just no point in whining about how hard it is to be gluten free, because then one only sees the difficulty and doesn’t focus on all the good (renewed health without surgery or drugs!) and how to make being gf easy.

      That hungover feeling you mention is experienced by many (plus the fog, moodiness, aches, and pains). In some cases, people refer to it as carb overload, when more accurately it’s the gluten load. Many folks feel much better on a low carb diet and often those are the ones with gluten issues. Some are lucky enough to realize the connection.

      Thanks again, Chelsey.


  31. Wendy Hahn on April 20th, 2010 5:53 pm

    Hi Shirley,
    I’ve been GF since this fall after convincing my dr to do the blood test, which still turned out negative. I feel so much better, no tummy problems, skin clear (at 50yr), energy back to normal.
    I love to cook and eat healthy, so GF was a cooking adventure. My boyfriend is very supportive too. He brought home several packages of GF pasta. He didn’t used to like eating white pasta, too high in carbs, but my GF pastas are low carb, so good for both of us.
    I’ve only cheated by accident. It’s too misarable to cheat on purpose for some storebought treat at work. Homemade GF treats like your poundcake are worth waitning for.
    Wendy in NM

    • Shirley on April 20th, 2010 11:15 pm

      Hi Wendy–It’s nice to see you again. :-) I just love hearing about your success! Yes, imagine how ill you’d be if you’d continued to eat gluten because of that negative blood test. Bravo to you for taking charge of your own health! So many people are in the other boat … with negative results and continuing to suffer.

      Your experience with cheating echoes that of many of us here … just a nightmare and why would we want to keep putting ourselves through that? not to mention the more serious conditions and diseases we could be exposing ourselves to.

      Thanks for mentioning the pound cake. ;-) Folks are still finding the recipe and trying it out with great results. I might make it in the morning for a BD party at work. ;-) Yes, great gluten-free treats and desserts are probably the most critical in making us feel special and “normal.”


  32. Jennifer on April 21st, 2010 7:07 am

    I was never diagnosed, but a few months after I started the diet I felt the results. I started losing weight (something I was unable to do easily before) and exercise became easier. I also, unfortunately, found I was diabetic, asthmatic, and lactose intolerant but they balanced with time. Of course, it was also easier to do because I was living in LA at the time and the main research area is out there. I’ve been off for 3 years at the end of this may, but there’s always a sad side to every story. My mother, who was also gluten intolerant from everything I saw, was diagnosed with ovarian cancer in may of 2009. I talked to her before about going gluten free, told her how easy it actually was, and gave some suggestions. Throughout the rest of the year, as far as I know, she did from time to time pull away from the gluten and actually eat gluten free. It was probably one of the only things that extended her life, besides surgery and chemo. But, in December, things got much worse. And December is the worst time you want to remember going through a tragedy. I made a midnight flight across the US from Arizona, where I had moved to, to North Carolina on Christmas Eve so I could be with her in her hospital room. She never left that room, and in January passed away. I am only 20…and I have to live without her, because advice doesn’t work. Even proof doesn’t work with some people. I guess what it comes down to is don’t ignore what you know. Your loved ones are the ones who suffer when you do.

    • Shirley on April 21st, 2010 6:35 pm

      Hi Jennifer–Your story speaks volumes and I cried reading it. I’m glad you’ve shared it here, but I am so very, very sorry for your loss. My mom is in remission from breast cancer and my dad is starting treatment for recurrent prostate cancer tomorrow. My mother is gluten intolerant, but won’t change her diet. She also has osteoarthritis and has many other issues over the years that say gluten intolerance. My father has had digestive issues all his life, but wouldn’t have any testing. I suspect I get it from both sides of the family. I could map my family tree and label all the health issues and it would amaze and disturb even me probably. It’s the hardest thing ever knowing that folks who need to go gluten free will only go gluten free when they are ready. And, sadly, as you’ve so poignantly shared, some folks are never fully ready and tragedy occurs. My heart goes out to you. Again, I’m very grateful that you’ve been willing to share your mother’s story here. We can only hope it will make a difference to someone reading.

      All the best to you, Jennifer.


  33. Shelley Orenstein on April 22nd, 2010 6:11 am

    Thank ou for your very poignant story. I found that I had DH about 8 years ago. The dermatologist told me “good luck in going gluten free” As i did not understand all the ramifications, and the DH wasn’t bad, i remained on a gluten diet. Seven years later, I was diagnosed with Celiac, and have now been gluten free for over a year. It isn’t too hard most of the time. I have never intentionally eaten gluten since my celiac diagnosis/. I feel much better, but think that I accidentally get glutened at times (not sure) I am trying not to eat out as much, even though the restaurants have a GF menu. Sometimes I think that there is cross contamination.

    • Shirley on April 23rd, 2010 10:57 pm

      Hi Shelley–I thought I’d responded to you, but must have lost my reply when I was having internet issues. Thanks so much for taking the time to comment. A diagnosis of dermatitis herpetiformis IS a diagnosis of celiac. That dermatologist did you a grave disservice. I was just told about another doctor, in this case a gastroenterologist, who gave his patient a diagnosis of celiac. He also sent her out the door with a ” good luck.” I think that the AMA would frown on both these cases.

      Bravo on being gluten free and having a great attitude. :-) The longer you are completely gluten free, the more likely you are to know when you get glutened. I wish it wasn’t so, but you are definitely right about restaurants having cross contamination. The only way to be sure that there is no cross contamination is to have a restaurant that’s completely gluten free. (I ate at one a few weeks back. It was wonderful.)


  34. Chaya on April 22nd, 2010 1:07 pm

    Thanks for sharing this. There are too many people with celiac who basically say what that man said. No symptoms, no problem……

    It may be denial or it may be ignorance. Either way, how does one reach these people?

    I have also heard, “it is too hard to eat GF.” Honestly, I don’t think it is difficult but even it is, for someone, how can it not be worth taking care of themselves for the sake of instant pleasure?

    • Shirley on April 23rd, 2010 11:06 pm

      Hey Chaya–Thanks so much for sharing your thoughts. I say that we try to reach those folks by spreading awareness and educating them, but the reality is that the individuals must be receptive and ready to hear the info at the time.

      I agree with what you have said about eating gluten not being worth it. For most of us, there is no instant pleasure in eating gluten though. In fact, it’s just the opposite. It’s hard to understand those who do find pleasure in eating gluten occasionally. And, certainly, they are still continuing to do damage.


  35. Anali on April 23rd, 2010 7:30 pm

    That was a powerful post Shirley. I know you’re definitely not into shock blogging, but I think you were right to tell Mary’s story. All of us who read your blog, and those of us lucky enough to have met you in person, know what a sincere person you are. Sometimes people need to get a strong dose of reality for it to sink in. You may just have saved some lives.

    • Shirley on April 24th, 2010 6:04 am

      Hi Anali–Thank you so much, dear. I truly appreciate your very kind words. I sincerely hope that folks who have been taking the gluten-free diet lightly will reconsider after hearing Mary’s story—respecting the seriousness of celiac and honoring their bodies with a 100% gluten-free diet.


  36. Naomi on April 25th, 2010 1:29 pm


    What a shocking and sobering story. I think that many people need shocking where diet is concerned. Although I used to go softly softly, now I try to make people aware how denatured food is and eating anything that isn’t real is not going to do them good in the long run. For celiacs that message can’t be shouted loud enough.

    Don’t eat gluten! Don’t kid yourself it’s ok.

    I answered your brazil question over at mine, but basically, if your ancestors didn’t eat them then go easy on them, if they did them you’re probably ok.

    x x x

    • Shirley on April 26th, 2010 8:06 pm

      Hi Naomi–Yes. Such an unnecessary and horrid way to die. I’ve alternated between softly, but firmly or shall we say energized. While I realize that people will only listen when they are ready (I can certainly identify with that on other subjects myself), I agree that we can’t let anyone think for one second that eating gluten is okay when one has gluten issues. Even one does not have celiac, but has other gluten issues, you are causing your body undue issues. Why? There are so many fabulous gluten-free foods to eat that one doesn’t have to eat gluten.

      Thanks for the Brazil nut answer. Yep, I guess it makes sense that I love pecans, walnuts (especially black walnuts), and almonds (CA is close enough, right?). Such a common sense answer, but sometimes I forget. I shouldn’t though because the old “eat what your ancestors ate” is why we really aren’t adpated to eating grains.

      Thanks much for taking the time to add your comments, Naomi. As a gluten-free homeopath and nutritionist, your input is greatly appreciated. xo,

  37. jamie frazell on May 3rd, 2010 6:51 pm

    what a horrid story indeed! my sister was diagnosed last year, not only with celiac, but also casein, egg, soy &yeast intolerence. it has been so hard for her, to change her diet basically overnight; i think that is part of the reason she has cheated in the past- she only remembers the taste of comfort food and forgets that it doesn’t comfort her at all. however, she has decided that it isn’t worth her life; she is 100 days straight as of yesterday and i made her gfree, vegan baby lemon cakes to celebrate. :) i’ll have to post the recipe. thanks so much for all your hard work and keeping us informed! jamie

    • Shirley on May 4th, 2010 6:53 am

      Hi jamie–Thanks so much for taking the time to comment and share your sister’s story. Celiac, with that many other intolerances, is a LOT to take on for sure. Bravo to your sister for being 100% gf, cf, ef, sf, and yf for 100 days!! I hope she is finding some of the blogs that do a beautiful job of dealing with multiple intolerances … like The Whole Life Nutrition Kitchen, The Spunky Coconut, Karina’s Kitchen–Gluten-Free Goddess, and more. Those bloggers, who I consider some of my good friends, do an amazing job. Once she has a few great recipes and tips under her belt, life will be so much easier. :-) How wonderful that you made her gf vegan baby lemon cakes! Those sound so good. :-) Yes, please post the recipe! I know folks will appreciate it. Last, I hope you and all the other family members have been tested for celiac/gluten intolerance, too. Thanks for the very kind words! I truly appreciate them; some days when life is coming at me from all directions, gfe reader feedback keeps me going. ;-)


  38. Alison on May 4th, 2010 1:39 am

    Great post Shirley, and a good wake-up call. I could never imagine cheating either, but I know people that do, except that they don’t see it as cheating because they were never formally diagnosed with anything. I wish there were more definitive (and doctor-accepted) tests to help people get a diagnosis. Then they may be less likely to jeopardize their health.

    • Shirley on May 4th, 2010 6:43 am

      Hi Alison–Thanks for the kind words and thanks, too, for your response. The thought of someone continuing to eat gluten after a celiac diagnosis (or any gluten issue) saddens and shocks me. But, yes, what you mention about folks not being formally diagnosed and, therefore, thinking an occasional “cheat” is not a big deal is a huge issue. I recommend that folks get tested to get some type of validation that they have gluten issues, whether they be celiac or non-celiac issues. But, sometimes that definitive diagnosis doesn’t come, or it’s not accepted by their own doctor, etc. We desperately need more definitive testing. But as I’ve shared before, without a drug tie-in to celiac/non-celiac gluten issues, I don’t think that’s going to happen. Whatever drives the development of new, accurate testing, I’m for it.

      Thanks so much for taking the time to comment,


  39. TK Kenyon on June 1st, 2010 2:58 pm

    Dear Shirley, et al,

    Thanks so much for this terrible, horrible blog post that every newly diagnosed celiac must read. I was diagnosed about 8 years ago.

    After doing pretty well at GF for about 3 weeks, I felt better and my body was healing, so I thought that just the little bit of wheat in soy sauce probably wouldn’t do anything. So I had some Chinese food for supper.

    And was sick unto death.

    That was the last time I “cheated.” I’ve been accidentally glutenized a couple times, but I haven’t *cheated* since.

    Nothing tastes as good as HEALTHY feels.

    Thank you so much for your wonderful blog and your quest to educate people on healthy food choices.

    I personally don’t understand why people think it’s so expensive to eat GF. The expensive stuff is all bad for you, anyway. Rice is cheap and good for you, esp the brown rice. If you can feed 2 billion Indians + Chinese on it, it’s got to be good, cheap, nutritious food.

    Thanks again, and atta girl!

    • Shirley on June 1st, 2010 6:31 pm

      Hi again, TK–I hated writing this post, but I couldn’t NOT write it. I do hope it will help someone. Those of us who completely abstain and then accidentally get glutened, usually feel the full effects and it’s not pretty as you’ve shared. However, folks who keep eating gluten and keep that damage going never know how good they can feel. Conversely, they don’t necessarily feel the extremes when they eat gluten. If we can only get them to stay gluten free long enough to realize all the benefits … I hope will all my heart that many of these folks will have an “ah ha” moment and give up the gluten permanently.

      Thanks for your kind words re: my blog! We all do our part to educate. By the way, since you are appreciating my discussion posts, you might want to check out some of the others by clicking on discussion in the Categories area of my sidebar. Another favorite of mine is Educate, Not Eviscerate.


  40. Kimberly on August 24th, 2010 5:08 pm

    Great Post! I am so glad I found your site! I have been gluten-free for 6 months and have cheated on purpose (when I first decided to go GF and was told I didn’t have celiac and did not realize I could have a sensitivity)) and, I am sure, on accident. I have had 2 thyroid tests and a celiac panel and they all came back negative. :( Not knowing is hard and it is an “easy way out” when foods you know make you feel miserable (pizza with friends) come around. You may think” well the tests came back negative so that must mean I can eat this!”. I am slowly learning that that is NOT the case. The test may be negative, but my body tells me otherwise. Over the last few months I have been trying to stay more focused on being GF, despite any other pressures I feel.
    The “peer pressure” I feel mainly comes from myself though. I need to get over the fact that I will not be celebrating with pizza and beer with friends anymore. I will have to do my own thing when it comes to food and drinks and not let anyone else’s judgments fog my focus. I will be the only one facing the consequences.

    Last week my fiance and I went to a restaurant and I asked the bartender if they served their chicken nachos with corn chips. They fumbled around for an answer and an employee who was on break over heard our conversation and shouted, “yes! they are corn”. So I ordered them and nearly finished the platter…
    about 45 minutes later I felt like I was in a fog. My concentration was off and I immediately felt so tired I literally could do nothing to keep from falling asleep. We were with my fiance’s grandma in the car and I kept nodding off, I felt terrible and helpless. My stomach gurgled so loudly and I was belching like something terrible. Then I had to have my fiance pull over so I could get sick. :( It was miserable and utterly humiliating.

    My symptoms seem to be getting worse and my body seems to be acknowldeging smaller amounts of gluten ingestion than it did BEFORE I decided to go GF.

    The nacho incident and your article really opened my eyes. I love seeing all the support on your blog and will definitely be back to scope it out! Keep up the great work. And Thanks! :)

    • Shirley on August 24th, 2010 7:46 pm

      Hi Kimberly–Well, I just wrote this long reply to you, hit the wrong key, and lost it! So here’s the shorter version. ;-) Welcome to gfe! Thanks so much for your kind words, and I look forward to getting to know you here and offering as much support as possible. :-)

      It sounds like you are on the path to recovery now–woohoo! I don’t think anyone follows a straight path on that. You will figure out the eating out thing, even with pizza and beer. There are many places that offer gluten-free pizza and gluten-free beer now. There are also great options as far as premade crusts like Udi’s, so that you can make your own with whatever toppings you like at home. Want to hangout with friends? Invite them over for a change and have a pizza party. Have some gf beer for you and regular for others. (As long as their gf beer stays in the bottle, it won’t be an issue for you.) When you have good pizza to offer, nobody will complain. I also have a flourless, naturally gf pizza recipe that’s on my site that many folks love–gf or not–be sure to read the comments. And, there’s a link to another great gf crust on my site, too. Check out the gfe recipe index. Over time, you’ll get used to eating differently and not feel deprived. Focus on how much better you feel for one thing, but you’ll also lose your desire for those gluten foods as long as you have some great gf food to eat. The happier and healthier you become, the more the judgment (on your part and any others) will disappear as you exude confidence that you are doing the right thing for your body.

      Yes, we do become more sensitive to gluten the more that it’s been removed from our system and the longer we’ve been gluten free. Before our bodies were in a constant state of disrepair/illness so we didn’t notice the effects of gluten in an instant. Now our bodies are getting “clean” and we can more clearly hear their cries of protest, so to speak. I understand the misery, but don’t focus on the humiliation too much. It’s an illness like any other illness, please remember that and be gentle on yourself. You wouldn’t be so hard on others, would you? I agree it’s a difficult position to be in though. I’ve only vomited a handful of times, thankfully. For me, I think it must be a specific type of gluten (perhaps barley) that I don’t accidentally ingest often–thank goodness. BTW, the gluten in your meal could have come from the chips containing gluten or being cross contaminated, or it’s possible the chicken contained gluten. Just FYI, nachos are usually not a safe bet when eating out.

      So glad you found me and gfe! Thanks so much for commenting. Don’t hesitate to email or comment with questions any time. ;-)


  41. terri O on February 6th, 2011 9:10 pm

    OMG–I have just googled this…wondering how this would affect me (I an a LOVER of beer!) I was wondering if I could go to my friends’ house with my GF pizza in hand and have a “few” beers…I am so glad that I found this…an incentive not to cheat. I am reading all I can and will continue–only hoping that my DH will stop offering me a beer….and stop saying that I am a hypochondriac!

    • Shirley on February 8th, 2011 8:24 am

      Hi terri O–First, welcome to gfe. :-) Second, I’m glad you found my post. It’s very important that we stay 100% gluten free, so I’m glad you are seeing the importance. Education is always key. Sometimes the message about being vigilant doesn’t get out strongly enough IMHO. Please share info with your husband on how harmful even a tiny amount of gluten can be to your body. You’ll soon be your own “self policewoman” though as the more gluten is out of your system, the more you’re likely to react to it, so a purposeful cheat with beer will make you very ill. Who wants that? Seek out some good gluten-free beer in your area or try something new like hard cider (most brands are gf, but check). Remember … a little bit of gluten is like a little bit of rat poison. No kidding.

      Hope to see you again at gfe! Happy to help any way I can. :-)

  42. Louise on February 9th, 2011 8:19 pm

    Hi Shirley

    Thank you for the information you’ve gathered. I’ve only just found your site, but I will be reading bits for a while!

    I started correlating being ill with wheat/gluten consumption about six months ago now, and started reducing it in my diet and it was a real relief to feel that much better (until I ate gluten again). Then I mentioned it to my doctor, and he put me through a blood test for Coeliacs. But of course I had been cutting right down for a couple of months beforehand, so as you would expect, it came back negative.

    I don’t know for sure that I am coeliac, but my aunt says she is wheat intolerant, and my dad says he has IBS (though I suspect we all could be undiagnosed Coeliac).

    The thing that is really making my life difficult is that I *also* have M.E. and Plantar Faciitis (and Hypermobility, Asthma, Polycystic Ovary Syndrome, etc.) so where most of the GF recipes call for a lot of preparation and effort to cook, I just don’t have the energy. I’m in too much pain or too exhausted to be standing prepping or at the cooker looking after pans and stuff.

    I am trying hard to avoid ready meals, and I eat properly where I can, but I really need more easy options until the M.E. ebbs a bit.

    Is there anything you can suggest in the way of quick and easy recipes, recipe books/websites, please?

    • Shirley on February 13th, 2011 1:07 am

      Hi Louise–It looks like you are new here–welcome. :-) I’m so sorry for the delayed response. I approved your comment and then got caught up in other stuff and forgot to come back to this older post to reply. First, major kudos to you for recognizing your gluten issues and taking your health into your own hands. It seems like gluten issues definitely run in your family.

      I am sorry that you are dealing with so many health issues. It’s very possible that they all will improve or even be resolved after going gluten free. The advantage of gfe is that most of my recipes don’t take tons of time. I truly try to keep the recipes simple, and quick and easy. Please take a look at the Recipes page if you haven’t already. Some specific ones that come to mind are Pulled Pork, jambalaya, garlic lime chicken (from Leanne Ely), special turkey breast, super easy turkey breast, tasty meatloaf in mere minutes, chicken tortilla soup, and baked potato soup. Several of those are slow cooker recipes. I think slow cooker recipes could be a huge help to you. Stephanie O’Dea’s slow cooker blog would be wonderful for you. It’s A Year of Slow Cooking at Another blog that has super simple recipes is Elana’s Pantry at I think mine and those two will give you plenty to get started on. But remember you don’t necessarily have to use true recipes either. Grilled and baked meat and seafood, simple prepared veggies, and salads can make wonderful meals and offer so many variations.

      Hope that helps! All the best,

  43. Louise on February 13th, 2011 2:51 pm

    Thanks ever so much, Shirley! I’ll go and have a look at those – slow cooker stuff is especially welcome – I have one of those but haven’t used it since I found most packet casserole mixes and gravy granules have gluten in, and haven’t found a decent substitute so far.

    Am glad I found your site. :-)

  44. GeorgieGirl on August 21st, 2011 12:53 pm

    Wow! Love your blog & catchy name!

    What a sobering thought… to conitnue to ingest what made you ill… Never did understand either. I frequently hear ramblings form diagnosed people I’ve run into over the years, in restaurants & other social setting (12+ since my own diagnosis) and am stunned by who they think they are cheating on when they knowingly consume gluten? knowning they should not. The worst exaample I have experienced was an doctor, son of another physician, who was diagnosed, yet continued to cheat – he also ended up dying from intestinal carcinoma… With the amazing pre-prepared options and vast range of recipes and availability of gf alterntives out ther now, how can it be difficult at all, to be good to yourself?

    • Shirley on August 23rd, 2011 8:24 am

      Hi GeorgieGirl–Welcome to gfe! Thanks so much for the kind words on my blog and title. :-)

      I appreciate you sharing your thoughts, your gf experience, and the sad story of the doctor. His death by intestinal carcinoma was obviously not a coincidence. Please keep spreading the word on living gluten free and well. Sometimes the gentle approach works, but sometimes sharing attention-getting, eye-opening stories like these are what it takes. I find that it helps to remember that we all struggle with different issues and sharing from a place of compassion makes our sharing have more impact.

      Thanks again,

      • Melanie on November 3rd, 2011 7:46 pm

        I don’t get all you people being shocked? Dr. Willaim Philpott said gluten is just as addictive as alchol, cigarettes, and sometimes even drugs, because it goes directly to the opiate centers in the brain. Everyone seems so judgemental about people who keep on eating it after they know it’s bad for them. I’m shocked you are shocked. Where’s your compassion? IN a society where there is bread everywhere..and that gluten is in everything it is very difficult to get off of it especially if you are an emotional eater as well! I think there needs to be more compassion and tolerance for people who cheat–no one can be perfect! Look at oprah she’s cheated for years…we shouldn’t shame people who are having a hard time rather we need to realize we are all different and there is a population out of there of people who aren’t supposed to eat gluten but for whatever reason they just can’t stop.It’s an addiction. Maybe if we supported them they could find a way!

        • Shirley on November 10th, 2011 10:01 am

          Hi Melanie–Sorry for the delay on replying … I’ve been on travel and just found your comment. Welcome to gfe and thanks for commenting. I wrote this post from a place of frustration and anger. I am well aware of the addictive effects of gluten. I lived them for many, many years. I first read about them from a scientific standpoint (but with an “ah hah” moment of understanding) after I first went gf in Ron Hoggan’s Dangerous Grains and I was just reading about them again this past weekend in Dr. William Davis’ new book, Wheat Belly. Dr. Davis recommends going cold turkey when giving up gluten because of the addictive effects. Much like any other addiction, like the ones you cited, an individual cannot stop eating gluten as long as it’s in one’s diet. If one says, I’ll just eat this cracker today, that simply won’t happen. More gluten will be consumed and one will not go gluten free. Most of us go down one of two paths, the path of giving up gluten immediately and sticking with it or resisting giving up gluten and “cheating” because if we have a little we simply cannot stop. For those who don’t have visible symptoms, giving up gluten can be harder. My good friend Heidi Kelly has written about her path of cheating very openly, honestly, and often at her blog, Adventures of a Gluten-Free Mom. Her most recent heartfelt post on the topic is here. A later post of mine that you might find helfpul is Grieving Gluten. Although in this particular post that you are commenting on, I expressed my great frustration, you will find my empathy to all throughout gfe. As a blogger, community speaker, and support group leader, I often counsel folks on finding a way to make living gluten free work for them so there will be no cheating. I think there is a LOT of support given daily to all dealing with the addictive effects of gluten, but I admit that it’s hard for those who immediately gave up gluten to totally understand those struggling and cheating (even if we went through months of detox/withdrawal/hard times after going gf ourselves). So I very much appreciate your comment and I know others will, too. Please check out Heidi’s blog. As someone who does completely understand cheating, she offers lots of advice on the emotional component.

          All the best,

  45. terri ann wicks on July 3rd, 2012 6:43 pm

    Well I was a cheater I’m only 3 months into this diet.I promise you it was the gluten and when I removed it I was fine.Every once in awhile I would cheat and it would take 3 to 4 days for me to feel health again.I had bought hebrew notional hot dogs made one ate it and started feeling my eyes start to water and just ill.I thought that kosher food was gluten free…I was wrong because Im 45 days with out gluten and I was feeling great could walk no grunting no bloating eyes were normal not swollen or teary.I’m very upset with myself that I did not look this up first.Today is the 3rd of July our town is haveing there fireworks tonight and from one hot dog I can not go I’m not as sick as I use to get but I’m sick and belly hurts.You can see in my face that I’m sick and I’m in for the next few days.If you are going thru any of these things just take 3 wks eat fresh veggies fruit and fish or chicken no spices I promise you it will change your life.I was sick 12 years no clue my Dr. asked me to try the diet all my tests were normal no sign but the change in the diet worked and while its kinda hard to change your mind on the foods you love the reward is beautiful.NO MORE CHEATING AND I WILL LOOK UP ANY FOODS NOT SURE OF.I LOVE LIFE well not right now…..

    • Shirley on July 3rd, 2012 11:47 pm

      Hi Terri–Welcome to gfe. :-) Many thanks for being willing to share your personal story with us all, as well as your advice. It really helps folks to see that they are not alone. Some of us can go gluten free and never cheat, but others struggle. No, kosher foods are not necessarily gluten free. Kosher labeling can be helpful, e.g., certain labeling indicates whether kosher products contain dairy or not. Per my understanding there’s no kosher labeling that is related to gluten-free. There are, however, many more Jewish foods offered during passover that are gluten free.

      Per the available info, Hebrew National hot dogs are gluten free. Did you find otherwise? Or did you eat your hot dog on a gluten-full bun? I just want to be clear so my readers know how to deal with HN hot dogs. In any regard, I’m so sorry that you are ill and suffering over the 4th of July holiday. :-( Two posts you might find helpful: How to Recover After Being Glutened and Grieving Gluten (all the stages; you’ll see where you are).

      Hoping for a quick recovery for you, Terri, and the very best gluten-free life going forward!

  46. Kelly Cummings on September 6th, 2012 2:30 pm

    Thank you so much for writing and sharing this story. I was recently diagnosed and I find it very hard to be GF. I know there are a lot of comments here that folks do not understand why it is so hard. For me, it is. I wish it were not. I find that since I KNOW I have celiac, that I am constantly thinking about food. So, I am turning that focus into a new path for me and a renewed love of cooking. Trying new recipes, etc. has really helped me in my struggles of trying to find things I like. I have a few other food allergies but nothing I really miss.
    Also, I have a husband and son who are not gf. I find that is harder than I thought it would be. I am not sensitive to being around it, etc. or cooking it for them. But sometimes it is hard to make it for them.
    I do like your analogy of “rat poison” and that put it into a better perspective for me. Until reading your blog, I did not realize an occasional cheat would start your cycle all over again. I just did not know that it would take that long for it to get out of your system.
    I have googled a few books and will be getting those, reading more here and embracing this lifestyle rather than letting it get the better of me.

    Thank you! Kelly

    • Shirley on September 8th, 2012 7:43 pm

      Hi Kelly–Welcome to gfe! :-) I’m glad you found this post helpful, but please know that I was coming from a place of deep frustration when I wrote these words. I stand by it as far as the gravity of the need to be 100% gluten free, as well as the fact that it doesn’t have to be hard. But I do have empathy for those like you who struggle. I have many posts here on gfe that deal with the emotional aspects of living gluten free. You may want to read Grieving Gluten (which examines the stages of going gluten free); They Just Don’t Understand, Part I; and They Just Don’t Understand, Part II. I also recommend that you read and consider the Top 10 Reasons to Live GFE and My Pantry is the Key to Living GFE. My whole approach is on living gluten free easily in every way. Focusing on real foods, whole foods, that are naturally gluten free, plus some mainstream foods that are gf, and just a few gf specialty products will do that for anyone. It doesn’t seem that groundbreaking, but living this way allows one to live simpler, less expensively, more healthily, and you can make and serve foods that will make everyone happy in the family, because they are just “normal” foods/recipes with no weird tastes and textures. I hope you’ll take a look at many of the recipes in my Recipe Index and see what I mean.

      It sounds like you are already taking the right steps to move forward, Kelly. Many, many kudos and good luck to you! Please send me an email if you need specific assistance to make living gfe work for you and I hope you’ll follow along here to get further support on an ongoing basis. :-)


  47. Evan Corstorphine on March 7th, 2013 2:40 am

    Hi Shirley,
    In the middle of an episode this week, I found your site and articles through Google while groveling on the floor with my iPhone. I’m a 50yr old male, and have been gluten free since November 2011. Up until then it was a byzantine maze of symptoms, mainly being severe gastro-distress after a meal containing gluten, and a few days later, arthritic swelling of my hands. When I figured this out, it was wonderful and quite easy to make the transition to gluten-free. I keep saying that all this has done is that its helped my wife and I eat better, fresher, more organic food, and broaden our horizons. It’s all a matter of perspective.

    After going gluten-free, I have become extremely sensitized to accidental ingestion of gluten. I just (today) was able to recover enough to get back to work after getting gluten-bombed at a restaurant while out of town. My symptoms are now so severe that I’m frankly quite concerned. My GI tract stops, locks, and expels everything. I was turning inside out for 15 hours until my wife was able to bring me prescription anti-nauseal drugs, and another day feeling less nauseous but like my head was going to pop. If she hadn’t been able to get me those disolve-under-the-tongue tablets to stop the endless vomiting, I would definitely have been in the ER this time around. Today I ate and drank for the first time in three days (besides the pedialyte to start recovering)

    The culprit — my fault — was french-fries at a chain restaurant. They coated them with flour to make them crispy. I have known this but I was with friends, my guard was down, and I just wasn’t thinking. Sensing something was wrong during dinner, I went to the bathroom to purge but I was too late, the damage was done. I didn’t sleep that night, and by morning I was so sick I couldn’t function.

    Except for awful mistakes like this, I find the GF diet exciting and liberating, and not at all a sacrifice. Nothing I could “cheat” with could ever taste as good as healthy feels. And considering how I just got bombed, it only stiffens my resolve to be more careful and educate others about this condition.

    What I am trying to do as well, is put together a gluten-bomb-recovery-kit so that if (when? god no…) I get nailed again, I can have the remedies and medicines I need close at hand. I’ll not let myself be trapped without help again.

    One thing that you wrote, and others wrote, really sticks with me and bothers me. That is, you sort of expect you’ll get nailed again. In my case, the episodes are getting so much worse each time, and I’m extremely afraid of that. It is so painful, so miserable, and so debilitating, I never want to go through this again. I am trying so hard. Failure isn’t an option. I want a long and happy life, not one of fearing my next poisoning.

    Well that’s all for now. Thank you so much for putting the effort into such a worthy and wonderful blog. It’s people like you who make a difference for those who haven’t figured this out yet, and who might just save a life with your selflessness. Thanks. – Evan

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