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Is the gluten-free diet torture?

Posted on December 5th, 2008 by Alison Read 37 Comments - Add Your Own »

I am extremely annoyed by a recent article in Newsweek online where Dr. Peter Green, director of the Celiac Disease Center at Columbia University, is quoted as saying, “I don’t think people should torture their children unnecessarily,” referring to people who put their children on a gluten-free diet without a diagnosis of celiac disease.

While I highly respect Dr. Green and Dr. Fasano, both quoted in the article, I really think that doctors need to start thinking outside the celiac box when it comes to gluten. They know that 1% of the population has celiac, defined by a blood test and biopsy. But can they know for sure that the other 99% of the population does NOT have a problem with gluten? No, they can’t know this, and they don’t know this.

Perhaps the celiac blood tests are actually doing more harm than good to a segment of the population that has some form of gluten intolerance but not the strictly defined celiac disease. Here’s why: Someone goes to his doctor, gets tested for celiac, tests negative, is told he doesn’t have celiac and therefore can eat gluten, and is sent on his merry (unfortunately, not so merry) way. How sad for those people who would feel better on a gluten-free diet — but won’t try it because the tests and the doctors tell them they don’t need it, and shouldn’t go on a gluten-free diet… because it is torture! Because fibromyalgia, headaches, sleep disorders, learning disabilities, and rashes are much better than a gluten-free diet.

I really don’t understand why a doctor wouldn’t say, “Sure, try it. See how you feel and let me know what happens.” What could it hurt? And how about autistic children? Dr. Fasano is quoted in the article as saying, with regards to autism, “I don’t think there’s too much scientific basis to justify [the] broad intervention of a gluten-free diet.” So what? It’s not like autism is scientifically based in the first place… the medical community doesn’t know why it happens or why it is increasing, but it is. Why not try the diet? If it helps any autistic children, doctors should suggest it or at least not discourage it.

“I’d rather have chemotherapy again than do a gluten-free diet.” This is what a 65 year old man said to me today after I suggested that an autoimmune disease he has (polymyalgia rheumatica — the same one my mom had before going gluten-free) could be helped by a gluten-free diet. He had been through chemotherapy for prostate cancer. What? Someone would choose chemotherapy over giving up wheat? That sounds absolutely crazy to me… I guess people have different ideas of torture!

Want to read more? Here’s another opinion on the article from a mother of a child with autism.

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  1. The conversation went like this:

    David “He’s a doctor Mare.”

    Mare “And he’s an ass.”

    What’s with these people?!?! I don’t feel like its torture at all, just wearisome and I get the most frustrated when I’m making up container after container of flour blends and mixes and end up with twelve different blends…that all look identical.

    Greene should know better than to protray the gluten-free diet in the most negative light possible! He’s not quite as highly respected by me as he was previously.

  2. I agree w/ Dr. Green that it is torture, particularly for teens. I live in Park Slope,
    Brooklyn where there is access to much gf fare, particularly at the Food Coop.
    Despite this, there is list of code names to memorize a mile long, and though
    it is easy for me to follow, because I eat no grains, use no sauces, seasonings,
    dressings, or much processed foods. It is not for him.
    He goes out w/ friends and has to sit through their pizza and junk consumption.
    Other food is way more expensive. I don’t really know if he is following the diet
    (I doubt it) and this is a big concern.
    He has had all testing (blood, endoscopy, biopsy) so it matters. I and doctors
    can’t seem to scare him into the discipline, scrutiny, and planning needed
    to stick w/ the 100% compliance recommended.

  3. I gotta say, I agree with Risa and Dr. Green. Celiac can make you a social pariah. I know that my friends roll their eyes whenever they are reminded that I have to be accomidated when we go out to eat (and I’m almost 30! I can’t imagine what it’s like for a kid). My mother and brother (who I lunch with frequently) like to remind me that they are eating at restaurants they aren’t particularly fond of because “you can’t eat anywhere else.” I live in the Midwest and I gotta tell you, GF outside of home is hard. Sticking to the GF diet when all you can think about are Big Macs and Domino’s Pizza can be really very challenging.

    Not to say that had I to do it over again, I wouldn’t have done the GF thing after my dx (like I really had much choice), but I don’t have anywhere near the social or restaurant life I did before my dx last year. Most of my friends just decided it was too hard and my family has mixed levels of belief that gluten is really what’s making me sick (I mean, how harmful can a little wheat be, really?).

    Sometimes, I do believe that living gluten free is torture. I wake up thinking about what I’m making for dinner (we’re a one income family and I have to make everything pretty much from scratch to save some $$$). Some days I just want to eat a box of ice cream for dinner… or just be normal for once and order out without having to ask a million questions and then pray to the Gods of NonGluten that everything is made to my specs. Oh yeah, and did I mention what a jerk it makes me look like when I try a new restaurant?

    For all the benefits that the GF diet has given me, a Celiac, I still have many, many days when I wish it wasn’t me. Maybe it’s not torture in the Guantanamo Bay sense, but it’s not always a lovely walk in a rose-filled park.

  4. I agree that the gluten-free diet is not something any of us would choose. It does make for a more difficult life. I have never suggested that someone who feels perfectly fine and has no problems whatsoever should stop eating gluten.

    My point is that if people are sick, what quality of life do those people have? Which is the torture – the diet or being sick with no doctors able to give you answers? If being gluten-free can cure people of their ills, which it can for so many people, then doctors should suggest that it might help, not rule it out based on their specific tests. Then the person can decide, once they have all the information, if they want to do the diet or to be sick.

  5. Of course, people understand the diet is for their own good.
    My point is that kids and teens who have symptoms like brain fog or are overweight because they overeat or don’t exercise when all their friends do the same and have none can’t always find the support and discipline to
    stick w/ a very challenging diet outside the house.
    It’s not like he gets an immediate reaction to gluten foods.
    40% have no obvious symptoms.
    It must be very hard for you, Kristi. I live in an area which is very aware of
    alternative stuff, but find I have to eat the same 3 meals every day w/ little
    variety just to keep it routine. At restaurants, I order only 1 dish: dry salad,
    steamed veg, and grilled fish and tell them 5x to eschew the sauces.
    It doesn’t matter what kind of restaurant I go to and makes eating out
    not very fun, but this is the only way I can negotiate it. The same happens
    every place I go whether its a holiday, party, or any other occassion. You
    must be a drill sergeant about it.
    The only motivation is I never have to worry about my weight when most
    of my middle aged peers do (I’m 55).
    My son doesn’t have this discipline unfortunately.

  6. Hi Risa,

    I’m in Park Slope, Brooklyn as well, but split my time between here and Cary, NC. My boyfriend recently went 100% GF and found amazing results as quickly as within a month. He’s not celiac diagnosed, but instead was having serious carpal tunnel inflammation / RSI problems, as well as some respiratory issues and digestive discomfort. And he’s only 26! After a few weeks, he saw remarkable improvement in all those areas, and he won’t go back, no matter what the doc says.

    It certainly has put a bit of a damper on our usual social life, but we have adapted. Many restaurants in the area are extremely accomodating (I highly recommend Scottadito on Union Street), but also we have taken to cooking for ourselves so much. At first I was unhappy about it (what Brooklynite cooks more than once a week… and by “cook” I mean heat up frozen meals) but I have really come to enjoy the challenge of putting together delicious meals that he loves, and, most importantly, that his body doesn’t hate.

    I am a true believer in GF living for a purpose, and it seems as if purposes have become more and more evident as people discover the advantages. I just hope as more people become aware that sometimes GF isn’t a choice, more GF options will become available and more restaurant kitchens (as well as groceries) will cater to helping the population become more comfortable and healthy.

  7. I have lived with a wheat and dairy allergy since my teens – maybe earlier, but this is when I found out. Only recently did I finally discover that I am also gluten-intolerant – and I still haven’t been tested for celiac, but for me, since I know my body so well, I can tell when I am reacting to something. And even oats bother me now. So, since I feel so much better GF, I have stuck to the diet.

    I am now 31, have my first baby who is almost 1 year who I have been exclusively breastfeeding. He is also sensitive to dairy and soy but is starting to grow out of it.

    Anyway, I have to say I am most happy now that I am creating meals every week that are yummy and GF and CF. But it hasn’t always been this way. Even now, as a busy mom and business owner, I agree with the people who wish they could eat out at a restaurant and pick anything and not worry about it! As it is, I live in a very small town with few restaurant choices. So, I end up going to the same restaurant and getting the same thing.

    The main thing that I remember being so difficult growing up with these allergies is that 1) my dad would always “forget” that I had allergies. I would always be in situations where he would be ordering pizza, etc. and I’d have to say, well, I can’t eat that! I always felt a bit freakish and like he really didn’t understand that this was a real problem for me.
    and 2) because I got these reactions from him, and others, I would always seem to slide off my diet and say “well, it’s really not that big of a deal. I can eat it now and then.” This began the swings back and forth between sticking to my diet and cheating here and there because it was easier and socially acceptable.

    It took me a long time to work through all of this – to be comfortable with my diet enough to stay on it in the face of these situations. Now I’m happy with the way I eat, but it doesn’t make it any easier to travel, etc.

    That’s enough rambling from me!
    thanks again

  8. What a great topic. The comments are fascinating and varied. I congratulate you Alison.

    My view/opinion is based on my 8-year old who has been off wheat, dairy, egg, and peanut for over two years.

    The Bad: Cannot participate in a lot of school activites or social activities everything is centered around food. Yes, we have treats for a replacement, but sometimes it just breaks her heart. I think she doesn’t get invited for playdates because the parents are freaked-out.

    The Good: My daughter is developing a life that is not centered around food and consumption. We have freinds over to her house instead, and that suits us just fine. She loves her Gluten-free foods and if given the choice, she would stay with almost everything that I make for her.

    The Choice: My choice is to not pity her. She has a great life with good friends. Her sport is syncronized swimming so there’s never a cross-contamination issue plus its great for her asthma. We’re written a food allergy cookbook and she’s really proud of it. Whenever she pouts I tell her “Hey, I’d like to have a donut too, but its just not good food so we’re going to have something else.” Life’s full of adjustments, we’ve decided to just go with it.I don’t care if its unpopular or a hassle for everybody else.

  9. You guys have really good attitudes! I’m especially jealous of Sharon,
    who can get her 8 yr old to comply, while my 16 my old son
    can’t be trusted, and I can’t keep him locked up.
    I’m afraid to send him to an out of town college because of his non-compliance
    I have carpal tunnel issues as well, and found the GF made no difference.
    The only difference I find is I don’t seem to be getting winter colds,
    as I work w/ children and everyone coughs and sneezes on me.
    Good luck !

  10. My husband and 3 daughters (8, 6, and 3) are diagnosed Celiacs. My 3 yo also has allergies to peanuts and eggs.

    Last weekend I made 10 dozen cookies for class parties for this week, and loved it. Sharon has a good point – you choose to make this work. Most of the kiddos in my girls’ classes at school are easy-going and kind. We have close-knit relationships with parents who understand that class parties are more game-oriented than food oriented, and teachers send home lists of things kids can bring in that are safe for the girls – most of the time everyone complies. Birthday parties are tricky, but most parents are aware and make modifications, or ask that we bring our own cake, etc. Cooking projects in my daughter’s 1st grade class are totally gluten free, and the kids’ classes have the best attendance because every kids washes hands when coming in the classroom, and before and after touching food.

    My oldest daughter has Autism and Celiac, and her classmates inform anyone who comes into the classroom – volunteer, sub, observer – not to give Ciera treats that aren’t on her list (located inside the snack cabinet).

    My point is, we make it work. I work part-time, have to special order many foods or make from scratch, have three kids in public school (two with special needs), and a husband who works 60-70 hours a week outside of the home (also Celiac). We choose to make it work so that we can be a strong, healthy family for as long as we can be. Yes, it’s a lifestyle change, and yes, it can be hard and frustrating and maddening, but if each time we go to a restaurant or grocery store we educate that waiter/waitress/stocker/customer, just think what could happen. If nothing else, it helps out the next Celiac that crosses their path!

    I am saddened that the GF diet is being referred to at times as “torture.” I think my children eat healthier and better than many kids their age, and have an awareness of what goes into cooking/preparing foods. Amelia was so ill pre-diagnosis, when we found out it was food-related, we rejoiced — she could get better just by changing what she eats! Now she’s 6, and she’ll ask “Does this have wheat? I don’t want to be sick!” I just don’t consider that to be torture. I call that a child on her way to self-advocacy, having a chance at a long, normal life.

    Thanks for letting me write a book! 😉


  11. Post Christmas Party at School Report:

    All the “regular” kids got two round store bought cookies and one tub of green pre-made frosting to decorate their cookies. Then my GF/Allergy daughter opens up her tub of special cookies. She had made a cookie that looked just like her with little pigtails and chocolate chip shoes. I brought THREE little tubs of white homemade frosting and food coloring so that she could mix her own colors.

    All the other kids looked at her spread with their jaws dropped and I said “I bet you guys wish you had food allergies!” and they all (ALL) chimed in with their little wistfull voices “I wish I had food allergies” “me too” “me too”.

    It was fantastic!!!!!!!!

  12. We have 3 Celiacs, and 1 gluten-intolerant family member in our home. We also have allergies to milk and corn. I don’t see this condition as being any different than any other medical condition. Most of what the average American eats is bathed in sugar and corn syrup, yet when someone is told they are diabetic and must stop eating sugar, they do it. The biggest problem most people have with this diet is the mentality of the change that will be required, again no different than diabetes. 30 years ago we didn’t eat out 6 days a week or eat in our cars, we ate at home at tables in our own kitchens. Being GF causes us to plan ahead or cook. What a hardship! We have to be more mature and responsible. The reward of this is a recovery of our health and well-being. I’m sorry, but I don’t understand how that should make us depressed. I agree that once the public is better educated on Celiac it will offer us more options for prepared foods and restaurants. But I have yet to eat anything out — except at the highest quality places — which could rival anything we create here at home. We choose to look on the blessing side of this change – and embrace what we’re becoming as a result of it.

  13. It amazes me that people with no medical background can distrust anyone like Dr. Greene or Dr. Fasano. You have not had the experience of coping since the 1960’s when there was no help at all and only biopsies to rely on. I had two children that were told to eat gluten and because of invalid tests of the old days which complicated any future or true tests for the future. They still have questionable health and other auto immune problems as a result.One thing that is a fact is that the celiac testing MUST come first, and then you can choose to eat whatever works if you are NOT A CELIAC. If you switch to the diet first, there is no way to tell if you are a celiac and MUST stay on a lifelong diet. You need to do your research before you take the matter into your own hands. The doctors do know what they are talking about in this case. Dee, from Dallas and also must stay dairy free, which requires a test also!(Along with other tests, not of the skin type)

  14. Dolores,
    I assume your comment is aimed at me? I would like to respond…
    First of all, not once anywhere did I use the word “distrust.” I have all the trust in the world that Dr. Greene and Dr. Fasano are celiac experts and that the celiac tests have helped a lot of people, like ME, get an answer. I agree with you that people should get a test for celiac before beginning the gluten-free diet, and I always advise people to do so.
    But you are reinforcing my point exactly by saying that because there were no accurate tests, your children were told to eat gluten. The same thing is happening today — the tests are not 100% accurate (this is a fact that both Dr. Greene and Dr. Fasano would agree with), and people who test negative for the strict criteria of celiac disease are being told to eat gluten. I know people personally who were told by doctors, “Do not go on a gluten-free diet. It won’t do you any good.”
    The celiac tests are great for those who test positive. They are not helping those who test negative. We need to start thinking outside the celiac box.

  15. I have been dealing with the torture of Irritable Bowel Syndrome for 25 Years. Recently (One Month and counting) My wife and i decided to try a Gluten-Free diet to see if this would help relieve my symptoms. (Her Niece has Celiac and has been Gluten-free and pain free since the age of 14, She is now 24)

    Guess What? I have been feeling substantially better ever since. Better than any time in recent memory. Did my GI doctor recommend this. NO! as a matter of fact he never mentioned it as a possible diagnosis. Every time I would see him, he would ask “Have you been feeling Normal?” It has been so long that I have been suffering this disorder that I couldn’t remember what normal was.

    I am learning to live with this adjustments and have a smile on my face. I am also avoiding bad eating habits (Fast Food!) as a result. I welcome this adjustment over the chronic pain, and potential embarrassing accidents and ever-altering lifestyle I have dealt with almost half of my life.

  16. My 15 yr old son thinks it’s torture and so do I at times…then we remember the headaches, the brain fog, the aching joints, the restroom run, etc. Now, we know it’s just our way of life. I also have MS and Fibromyalgia and I really feel that they might have been prevented if I’d known about Celiac when I was 15. This is mainly what keeps my son compliant…he has first-hand experience of what can happen to a body that is being under constant attack by something as inocuous as gluten. It also helped when a gorgeous bald guy told us about his permanent hair loss due a skin issue related to celiac…that keeps my gorgeous son compliant as well. But, the day that a magic pill comes out that allows us to join in on the gluten orgy…we’ll be the first in line for a donut! 🙂

  17. I want to say thanks for your plug on Amazon for the G-free diet book. your website is awesome!

    I have had stomach issues for a long time. I began having issues around age 14 with feeling “homesick” and needing to throw up frequently. I also haven’t had any ‘normal’ bathroom visits since then and within the last 5 years or so I’ve been very sluggish and literally feel like passing out after I have pizza and a beer. I am now 25 and after bleeding 2ce with severe stomach pain in several months, I went to the ER (I went both times but the first hospital said it was stress or something and to come back if it happened again) and put me on Prilosec and said it must be an ulcer or hemmoroid(sp?).

    I found a great local Dr who did a series of blood tests and found a sensitivity to gluten. He said I most likely don’t have Celiac but I may want to try going G-Free. I wasn’t too thrilled at first because I was adjusting to a new city and new restaurants and my mom was getting into baking! Hopw could I resist mom’s fabulous gourmet dark chocolate cupcakes??? Well, After settling into my new place and eating the stuff I wanted to first, I finally was able to shop at a GF market near my mom and I went GF. Within 2 weeks I felt awesome! No more upset tummy or pain and I finally felt AWAKE!

    I have messed up a few times and had a little more bleeding and stomach pain since. I found that if I have a small amount (like a bite or 2) that I’m generally ok, so that is good I can at least taste some things with G in it. I think it’s been about a month or so on the GF diet. I got to say that yes, it’s a little inconvenient but my God is it wonderful! The cookies and breads and stuff I am baking are incredibly tastey! I will never go back again (unless it’s by accident or mom makes something I can’t resist….mmmmm)

    Sharon in S.R. – I have swam/coached Synchronized Swimming for 13 years, that’s an awesome sport!

  18. Yes, I got tested. Unfortunately, I had been GF for a month so, No, it was negative. Do I believe it? Absolutely not!! After 15 years of being told it is IBS and living GF for the last 9 months, there is no way anyone can convince me to go back to eating gluten just to retest. My Dr says stay on the diet if it is helping me. My family and friends are supportive and I feel so much better. This diet is NOT TORTURE and definitely worth the small inconveniences. Many restaurants accommodate celiacs and offer special menus, if not I can always have a salad with oil & vinegar. I make my own bread and pizza and my friends and family love my homemade better than store bought!

  19. I have two Celiac children, ages 11 and 8. Both are diagnosed with autism, too. The autism diagnosis came before being diagnosed with autism. I have to wonder if there’s a relationship between the two, but I’m not convinced. I can’t say that being GF has made a huge difference in their behavior, but I can say that they have been a little easier since they’ve been GF (neither one was severe to begin with- one is mild and one is moderate).

    I can’t say that the GF diet is torture, but it’s not easy, either. I was diagnosed after my first child was diagnosed, so I’m not just cooking GF, I’m eating GF, too. It can be difficult to find foods at regular stores, but it’s getting easier every day. Eating at restaurants can be challenging, but it’s manageable for us.

    The best part about being GF for my kids is that they’re learning to read labels. If they want something at the store, I have them read the label to see if it’s OK. When a forbidden ingredient pops up, they understand that it’s off-limits. (That still doesn’t always convince my 8-year-old for good; he’ll frequently re-read labels “in case they’ve changed.”) Since my kids are growing up GF and can actually feel the benefits themselves (no more tummy aches all the time and no more trouble in the bathroom), they’re learning that being GF is positive, even if it’s a pain sometimes.

    I can’t say that I don’t occasionally feel sorry for myself or avoid social situations because of the GF diet, but overall I know it’s something I have to do. I have three kids and I need to be around for them for a long time. If being GF is what I need to do, then it’s what I do. (I didn’t have any significant symptoms prior to diagnosis, so I can’t say it’s made a huge difference in my quality of life.)

    Is GF fun, not so much… is it doable, definitely… is it torture, no way!

  20. Thank you to all who commented for your stories and your positive attitudes!

    And especially to Megan who must have quite a challenge as a mother, but who seems like she is making it work!

  21. I like to think the GF lifestyle is saving me from the many unhealthy ingredients the American food industry and cheap restaurant owners would like to foist off on me. Because of having to go GF, I’ve become an enthusiastic, accomplished cook and a more energetic person. And as for my social life, well, forget about restaurants! My family and friends would rather be eating in my kitchen anytime!

  22. Just came accross this web site and have read almost all the stories. It is always good to know that I am not in “the boat” alone. I was recently diagnosed celiac through a DNA test and noninvasive stool test and with Hashimoto(thyroid problem). Since I have been eating GF I am feeling so much better – cooking at home more and reading all labels. Yes, it is not the easiest way to live, but far from “torture”. I am so unhappy with the general medical community. It is criminal how they seem to know NOTHING about GF living or even care about helping their patients by suggesting that gluten intolerence could be the basis for their medical issues. I have been very lucky to hook up with a knowledgable sympathetic Homeopathic/Naturapathic Dr. who has me on supportive vitamins and minerals which with the GF diet have kept me feeling really GOOD.
    Since I am not a shy person, I feel perfectly fine asking any hostess inviting us what her menu is. If there is nothing offered that I can eat, I offer to bring something for myself so I can still be part of the group and share in the festivites with everyone else. I am hoping to bring the Gluten Issue to as many of my circle of friends as possible – we all need to be proactive. Speak up in the supermarkets and restaurants so more people will be made aware and respectful of the rest of us in the “gluten Free” life.

    FYI – my husband and I are going on a cruise on the Oceania Line and when I informed them that I was living Gluten Free they replied that they offer many meals GF including Pastas and breads. I seems that in Europe GF is a much more accepted and not so odd request. Lets see if we can wake America up!!!!

  23. I have a child allergic to wheat, oat, dairy, soy, tomatoes, and nuts. I am happy to have found this website. He is hyperactive and autistic. Since changing his diet I have seen a lot of progress in a short amount of time (3months). He is not cured and is still a handful. The diet is not a cure but a piece of puzzle to figuring out how to help your child. To all the mom’s out there who feel overwhelmed. It is worth it! Who else is going to protect your child if you don’t.

  24. Lynda,
    I agree – the GF diet makes you eat healthier overall!

    Great that you feel so much better! I have heard of some wonderful experiences on the higher end cruise lines.

    Welcome to the website. Hope you figure out the rest of the puzzle and continue to see improvement.

  25. Wow! I have been surfing the web and I am so thankful I found this site and for such an amazing resource (the internet) that allows me to find so many gluten free moms who have the same issues as I do. Nathan has been gluten free since birth. We knew he would have a limited diet at 3 months as he had extreme eczema and asthma, which later presented a long list of allergies:dairy, all nuts, gluten, eggs, mustard, now rice (he can eat in moderation).

    Nathan has been tested and had a negative test result because he never eats gluten, that is my confusion, why would I want to make him sick to have a positive test result? So we won’t get any tax break from the government, he is diagnosed as gluten intollerant. Is there a test we can take to see if he is celiac without eating gluten?

    This has presented many challenges as we try to find recipes that eliminate all these ingredients and taste good. We have also approached this with a positive attitude! Yes I felt horrible and all alone and wondered what I had done during my pregnacy to bring this on. I am over the guilt and have now become the resourceful mom who surfs the internet and tries recipe after recipe to find delicious treats for my son. The biggest challenges we face are travelling out of country, I pack a suitcase full of food and research resorts that will accommodate special diets.

    I look at Nathan’s gluten allergy with a positive spin since he is anaphalactic to nuts he will never take a cookie from anyone, which will reduce his odds of having that one cookie which has been contaminated with nuts risking his life.

  26. Yes, it’s definitely torture.

    I live overseas, in a country that is … how shall I say … utterly dependent on soy sauce. It is extremely difficult to get anything labeled “gluten-free” (imported, 99% of the time, from the US or Australia or Canada–it’s really rare to find domestic products labeled gluten-free). Wheat is a listed allergen in things, but barley is also a favorite additive, and it may or may not be listed.

    I think my torture would be a bit less terrible if I moved back to the US.

    As for me, I haven’t been diagnosed with anything. I had IBD (not IBS) that would flare up and go away, on and off since the diagnosis years ago. Recently I noticed a pattern with what I was eating. I took out wheat and it mostly went away. More recently I noticed that when I ate things with barley or modified food starch, I also had problems like reflux and such. So I took that out too. But now I’m going a little batty. Most restaurants don’t list allergens and most servers have no clue what’s in the food. Most people don’t know there’s wheat in soy sauce.

    Socializing is important here, but I can’t do that because I don’t drink and I can’t eat anything. People don’t socialize in their homes. So basically, it has turned me into a hermit. It isn’t even worth just going out and drinking tea or juice, because many restaurants will charge a fee of about $5 just to sit at the table. I don’t want to pay money to not enjoy myself.

    So yeah, torture. If mommy was cooking me gf foods or there were gf frozen foods at the supermarket, I might be going less crazy. But when I have to cook all my food from scratch in almost no kitchen in a country where food companies don’t even have to list all the ingredients? Torture.

    Just thought I’d share my two cents.

  27. Betsy,
    I can imagine that living in a foreign country that relies on soy sauce and has little awareness of food allergies is quite a different story than living in Europe, Australia or the U.S. Is there also a language barrier? I have traveled in foreign countries where I didn’t know the language and I found that having a translated card that I could hand to the people in the restaurant really helped. Also, if it mentions that you will get sick or vomit, that can really get their attention – otherwise they may not take it seriously (advice told to me by a Chinese friend!) Good luck to you… I hope you can find a way to make it work and be happy there.

  28. I just recently found out I am gluten intolerant. For 9 years, I have been living dairy free and that has been a major challenge, but I always felt like there was something else to the puzzle, because I was still having some asthma and allergy symptoms. I was talking with a co-worker one day and mentioned I don’t eat much wheat because it makes me “feel weird.” She asked me if I had heard of gluten intolerance. I had not, but a few days later, I was still feeling lousy and looked up the symptoms. I was shocked. I started eating gluten free that day (1 week ago) and feel so much better. I don’t ever want to go back. I don’t really care how inconvenient it is for other people. It is no more inconvenient than other people with health problems eating low fat, low sugar, or low cholesterol, is it? Even though my milk allergy is well documented, she doubts its validity and whenever I have been to her house, she always tries to feed me pumpkin pie, cake, whipped cream, etc. When I explain that I cannot eat that, she gets upset like I am offending her or something. She actually has a peanut allergy. I just don’t understand.

  29. Barbara,
    Congrats for feeling better! Who is it that doesn’t understand? A family member or friend? I’m just curious.

  30. My mother does not understand. Sorry, I guess I skipped over that detail.

  31. I have been diagnosed with multiple food allergies and intolerances. both by doctors and by my own food trials.

    Even though it is hard to eat out I still feel alot better than the way I felt before. Once you stop eating all the processed stuff its amazing how much really yummy food there is out there.

    I use some gluten free options like pasta and pizza shells, but basically I try to eat fresh foods.

    thanks for this site. It helps people feel less seperated from the world.

  32. Thanks for this website and all the great info. I have had digestive issues on and off since I was in high school. I’ve thought I had a mild form of IBS. Then after the birth of my third baby, my joint pain and fatigue got so bad that some days I could barely get out of bed. I finally got some well tests done and it came back that I have a high TSH (I had had it tested before, but my doc blew it off even though it was around the same back then). I started researching thyroid and found that gluten can aggravate the thyroid. Around the same time, I started getting sharp pain in my right side abdomen after random meals. I thought it was my gallbladder, got those tests done, and the surgeon said NOPE. My doc prescribed omeprazole, which I refused to take.
    I eliminated gluten, and have been GF for about a month. Let me tell you, I have SO much energy, no more intestinal pains or diarrhea, clearer skin, no more joint and lower back pain, and no more embarrassing stinky gas all the time. I ran 5 miles 2 days ago!! Three months ago I wouldn’t have been able to run 2 miles.
    I ate one crouton at a restaurant a few days ago, just to test, and the sharp intestinal pain came back immediately. I plan on turning our house into a GF sanctuary, because I do believe my kids have issues too. Going to talk to my doctor about it, but honestly I don’t care what he says. If everyone starts feeling better, it’s worth it to me.
    Exhaustion and abdominal pain is FAR more torturous than eating fruits and vegetables in lieu of bread and pasta.

  33. Annie,
    Congratulations on figuring it out yourself and feeling better! It is very frustrating for so many people that their doctors weren’t the ones who diagnosed them and that they had to suffer for longer than they should have. Good luck with the new diet for you and your family. Keep us posted!

  34. I am in the process of doing an elimination diet. For years I alternated between “C” and “D”. In the last 7 months, it’s been “D” about 3 days a week. So I finally went to the doctor and she referred me to GI dr, but had me start on an elimination diet-no dairy, soy or peanuts (because I had eaten a lot of peanutbutter during the time I did a food diary) until the app’t. My youngest son has chronic constipation as well as nasal congestion and post-nasal drip. Could his symptoms also be lactose intolerence?

  35. Cindy,
    Celiac disease and gluten intolerance have been known to cause constipation, diarrhea or alternating between the two, as well as nasal congestion. Dairy can also cause gastrointestinal issues and nasal congestion.

  36. As a was recommending a gluten free diet to a friend as a latch-ditch effort as an alternative to sinus surgery, someone else commented “I hope you don’t have to go on a gluten free diet.”

    Before I was diagnosed with DH and CD I was diagnosed bipolar. I thought I would have a lifetime of expensive medication with unkown long-term side effects and that I would have to suffer with my disorder through pregnancy to avoid birth defects. I was quite delighted to find I could control my “bipolar” symptoms (and “eczema”) with food! Plus, it has opened my eyes to different types of food I might not have otherwise tried. My husband and daughter, who do not currently have gluten intolerance, also benefit from a more varied diet. The gluten free diet has been a blessing – and a quite tasty one at that!

  37. Thanks Daphne for sharing a neurological symptom — those are less well-known as related to gluten.

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