Gluten's Growing Rap Sheet: Gluten Intolerance Without Celiac Disease

picture of sources of gluten
Gluten strikes again!

Last week we had a great post about a new Swedish study that could (to paraphrase Emily K, could could could) give us new information on preventing celiac disease, which is a huge step that most of us probably wish had happened a long time ago. In the last couple of days, some news has come out that examines the flip side of the gluten-free coin: a recent Australian study strongly suggests that gluten can be the culprit in moderate and even severe gastrointestinal issues even in people who have tested negative for celiac disease.

We already know that gluten intolerance without a diagnosis of celiac disease is possible, although both issues are seriously lacking in research. What this study was attempting was to provide harder proof that gluten intolerance could actually be triggering other gastrointestinal problems; in this case, irritable bowel syndrome. The study notes that, “despite increased prescription of a gluten-free diet for gastrointestinal symptoms in individuals who do not have celiac disease, there is minimal evidence that gluten is a trigger.”

The study, which was published in the American Journal of Gastroenterology, was conducted by a team led by Professor Peter Gibson of Monash University’s Eastern Health Clinical School. The school is a new one at Monash, Melbourne’s second-oldest university, and its research faculty specialize in developing novel treatments for gastrointestinal disorders such as IBS and celiac disease – which is pretty cool in and of itself!

The study focused on 34 people with irritable bowel syndrome, all of whom had been proven to not have celiac disease, but had reported benefiting from a gluten-free diet. The subjects stuck to their gluten-free diet for the duration of the study, but were also fed bread and muffins, half of which were gluten-free.

Nearly 70% of the volunteers who ate the non-gluten-free muffins reported symptoms that should ring a bell for most of us – bloating, extreme tiredness, and stomach pain.

As with most scientific studies, there are some issues that could be raised with this study, like the small size of the subject group and the duration of the test (which, at six weeks, is actually relatively long). But the implication here – that gluten could be the responsible party in IBS or other gastrointestinal diseases – is pretty fascinating, especially for those who have been frustrated by testing negative for celiac while still suffering from celiac-esque symptoms.

What has been your experience with celiac testing? Do any of you find relief in a gluten-free diet even though you’ve tested negative for celiac? What kinds of studies about gluten or celiac disease would you conduct if you had unlimited time and resources?


48 thoughts on “Gluten's Growing Rap Sheet: Gluten Intolerance Without Celiac Disease”

  1. I do not have a doctor’s diagnosis of celiac, but believe that I am. I have been gluten & dairy free for over a year, and will not do the endoscope as I cannot go back on gluten without being very ill. I think EVERYONE should be screened for gluten, dairy, soy and other food problems periodically, just as we are checked for cholesterol and diabetes. I know so many people that would benefit from a food change but will not do it.

  2. I have Ulcerative Colitis and a gluten intolerance. Not sure which came first because I was first diagnosed with H. Pylori and C. Diff infections, then UC. When the meds were not working, I began to think it was Celiac. None of the biopsies came back Celiac and after great success with a GF diet, I was diagnosed with gluten intolerance. If I get glutened too many times in a row it aggravates my UC and I have a flare. Last time, I was slowly glutening myself for a week before I realized that was what the problem was and it took 3 months for the UC flare to clear up. So on top of feeling crappy when I eat gluten, eating gluten can cause major issues for me.

  3. Thanks for writing, Shari and Nisha. The struggle with doctors and diagnoses can be so complicated – especially when you’re unable to test yourself by eating the thing that’s making you sick in the first place! Hopefully studies like this will continue to come out and give us a better understanding of the hows and whys of gluten intolerance.

  4. Thanks for sharing the info, Caty! Much more research is needed indeed! However, seeing such things as $45 million donations to the University of Maryland’s Center for Celiac Research and new schools opening around the globe that focus on GI disorders is pretty awesome.

    I must admit that I also think that only few communities can count on as much support and knowledge-sharing as the (online) gluten-free community. This is truly a blessing!

  5. My story began when I received my 23andme.com test results which showed that I have higher than normal odds for CD (which I had never heard of before and I had no idea what gluten was). After some initial research, I tried going gluten free and my GI issues immediately went away. I then went to a GI doctor but tested negative for CD. I had to go back on gluten for the tests and the symptoms immediately returned.

    I was then tested by Enterolab and the results were positive for Fecal Anti-gliadin IgA and Fecal Anti-tissue Transglutaminase IgA. My guess is that I either have something like “pre-celiac” (my term for catching CD early before a lot of damage has been done) or gluten intolerance.

    It would be nice to have some sort of “official” diagnosis but I have been GF for about 1.5 years now and will never go back.

  6. I went to several gastroenterologists over the course of my problem. The first doctor i went to, told me i had IBS and gave me pain pills. I wasn’t happy with this diagnosis (because it only masked the problem and wasn’t a true solution for me) so I gave up on the gastro doctor and went to a nutritionist. She believed i had food intolerances and was the one that took me off gluten, dairy, soy, sugar and sugar substitutes, processed foods, beef, etc…. She transformed my life allowing me to return to health slowly but surely by eating mostly whole foods. I did go to a second gastroenterologist after changing my diet (during my period of healing) and they tested me for celiac which came out negative. As most know, however, you have to be eating gluten at the time of testing so the test was not accurate. After many months of being on the diet, at a certain point my gastro doctor told me there was nothing else she could do for me because i was getting so much better with my diet change (which completely perplexed her). Over the course of 5.5 years, I have slowly added foods back into my diet but today I still remain gluten and dairy free and feel great.

    I wish somehow they could test for not only food allergies, but for food intolerances as well and find out what impact it has on your digestive system and the rest of your body’s systems. Every system in the body impact others and are not independent of one another.

  7. I was hypothyroid and switched from an internist to a naturopath because the internist wasn’t helping me much. My naturopath gave me an at home saliva testing kit to test for a whole slew of things. When the results came back, they showed me to be gluten intolerant. I had been having intestinal issues off and on but hadn’t mentioned them to him yet because I thought my lack of energy, weight gain, and brain fog took precedence over some stomach issues a few times a month. I didn’t even know what gluten was, and I was completely overwhelmed and angry for awhile after diagnosis. My intestinal issues have long since resolved (it’s been just over 2 years since diagnosis), my energy is better, and I can remember things again. I just wish I could get rid of the 30 pounds I gained in 3 months time! I supposed I could have CD, but I figured the proof was in the pudding; I went GF and my issues went away. I didn’t see the need to go see a gastroenterologist to have a really expensive test done to see if it was CD instead of GI.

  8. My grandfather and one of his daughters (not my mother) had celiac late in life, so I figured it was coming for me sometime. When I developed explosive diarrhea from eating bread, I got the blood test, tested negative, but *knew* I couldn’t eat gluten. My doctor had no need to declare either way, just said, “If you feel better off gluten, don’t eat it.” I figure it’s my life and if I want to hold off future damage and misery, it’s in my best interests to live glutenfree.

  9. I went undiagnosed for several years of severe stomach cramps, diarrhea, nausea, and anxiety. My doctors just diagnosed me with IBS and a nervous stomach after an endoscopy. I heard about Celiac on The View but didn’t bother with any doctors because I didn’t trust them at this point. After a week on a gluten-free diet, all of my stomach symptoms disappeared! I recently found a better gastro that tested me for Celiac (even though I’ve been gluten-free for 1 1/2 years) and that came back negative. Regardless, he says he always trusts a patient that tests negative and feels better on a gluten-free diet. I’m also dairy and soy free and I take Align once a day and I feel great. You will never hear me complain about living gluten-free, with or without an official diagnosis!

    PS. My gastro also said that in the U.S., with our insurance-company-run health care system, an unofficial “pre-existing condition” (gluten intolerance) is better than an official one (Celiac).

  10. Well, I’m glad to hear we have a few understanding doctors in the bunch!

    Michelle raises a really interesting point about the ramifications of a Celiac diagnosis when it comes to health insurance. I wonder if any of our readers have run up against trouble getting coverage because of their Celiac diagnosis? That strikes me as being particularly problematic, since the immune system can be compromised with Celiac, so a person who has it might spend more time in doctors’ offices than someone without, as many of the above comments would indicate!

  11. I’m not gluten intolerant, nor do I have celiac disease. However, I am wheat intolerant, and have found that switching to things like rye and spelt flour make a huge difference in my health.

    If I eat wheat (whole, processed, it doesn’t matter), I’m almost guaranteed to throw up soon, and have diarrhea the next day. If I eat other whole grain pasta and bread I’m fine. I’ve been told that it is quite possible to be wheat intolerant without it being the gluten, so I consider myself lucky that it’s not worse.

  12. This article could have been written about me! I spent years getting sick after every meal and the doctors could not figure out what was causing it. They thought it was a reaction to anything from dairy to bacteria in tap water. And yet no matter where I lived and what I ate, I would get bloated and experience the worst stomach pains imaginable — after every meal. I also had migraines and canker sores almost daily.

    I then remembered a good friend discovered she had a gluten intolerance and realized that was the one ingredient I always ate with my meals. I cut out gluten and about a week later all of my symptoms went away!

    The doctors did not find me to be celiac but I definitely get sick from any amount of gluten. It’s been 4 years since I gave up gluten and I’ve never felt better.

    In the words of my doctor, if it makes you sick, stop eating it! She said she has many patients like myself who were sick for years until they gave it up. It’s more common than you think!

  13. I have lost lots of weight and my doc said it was due to Celiac. I was tested and it came back negative. However, I feel MUCH better when I do not eat gluten. I can tell when I accidentally ingest it. I get Headaches and stomach problems, and bloating. I am also lactose intolerant too. Maybe the test only shows positive in severe cases?? All I know is that I’m staying away from gluten.

  14. I tested negative for Celiac at my specialists, but I have been on a month of gluten and dairy free and my stomach pain has completely subsided. Normally, I have a recurring mild stomach acid feel that goes up and down but never really goes away.

  15. I was tested for Celiac Disease in 1990 and found “negative.” However, at that time the amount and duration of the gluten challenge was far too small and short, so the answer now is: “I don’t know.” The jejunal biopsy was a waste of time. My gastroenterologist recommended a strict GF diet, and I’ve stuck with that and do well on it. For another jejunal biopsy, I would have to make myself very sick for what sounded like months. I don’t think so! I’m also lactose intolerant and wish more GF product makers would take those of us who are into consideration. I have friends who struggle with Migraines and Fatty Liver Disease because of gluten!

  16. ONly REad the title,… I don’t really have time to type my whole story,.. But You Can be a Celiac and have a Negative Reading,, And I’m the perfect example, about a year ago I knew I had an auto immune disease but I would of bet it was Sjornes or lupus.. I had many symptoms that have all faded after 6 month’s gluten free,.. Stomach Issue are no longer a problem.. But I suffered fare beyond stomach issues, My skin on my legs were veiny purplish blue (my face would look like this too, every once in a while), my tongue was geographical, dandruff all over my scalp; along with hair loss, face was bright red daily, butterfly rash appeared once a day, along with a small red dot below my cheek daily, Rashes were kind of common in other locations like the side of my thighs and on my chest. But all my visible symptoms have all disappeared it’s Amazing,.. And my health Is wonderful,.. I had many issues in that department too… But Yes You can Be Celiac with A Negative Test REading, It’s hard to believe but it’s absolutely the truth! And the Stomach Pain I had, I used to belch (loudest belch’ss you’ve ever heard ) everyday for thirty minutes. I had too I had horrible pressure built up underneath my rib cage, Constipation Yup,.. Gone!! Stomach Knots, Gone,,. I feel and look normal again and that’s a complete Miracle,.. All because of a diet! It’s a blessing! <3

  17. I had a negative blood test and negative intestintal biopsy for Celiac, but after being gluten-free for one week I no longer had constant diarrhea, I had an infinitely increased amount of energy, I was no longer as cranky and irritable. Also over time my skin showed great improvements in ways I didn’t even know were related to the gluten issue. There were so many symptoms that I realized only after I no longer had them. The biggest ones were the diarrhea, the mental fogginess, crankiness, etc., and the energy levels.

  18. MY experience has been long in finding this out. But about a year ago I was having major bloat, gaining weight, constant burping, and overall just feeling really bad. I saw a Gastro doc he did a blood test for Ceailic Disease, but was neg. he said I have IBS and was impacted with bad constipation so we took care of that, I felt some relief for about a week, Then syptoms started coming back, I was developing extreme fatigue also. I started a food log and it seemed like when I ate bread, cracker etc. I my system would stop and and the bloat would come back. I decided to go 100% Gluten free and see if things got better..boy did they, The bloat is gone, the gas is gone, the contipation is gone, the fatigue is gone. Gluten is poisen to my system, I will never go back!!

  19. Everything everyone is relating is SO familiar! I had symptoms for years and years – bloating, diarrhea, intestinal cramps, constipation, weight gain, fatigue, insomnia – all of which had been mis-diagnosed as a variety of different conditions/diseases. I finally found a chiropractor/functional neurologist who gave me the most comprehensive physical I’ve ever had. He immediately diagnosed gluten sensitivity which was later verified by diagnostic testing. I tested negative for celiac. I struggled with the diagnosis for a while, but I cannot argue with the results that I’ve gotten. Eliminating gluten from my diet has been life-changing! My symptoms have disappeared completely. I, too, will never go back!

  20. After 11 years of misdiagnoses, I suspected celiac disease after my younger sister was diagnosed with both celiac and ulcerative colitis. I went on several celiac websites, compared the symptoms to my own, and then went to my doctor and asked her to perform the blood tests. No surprise — they came back postitive. My symptoms were varied — huge weight loss (and I had already been underweight my entire life); stomach cramps and chronic diarrhea; occasional and unexplanable episodes of nearly blacking out; limbs that would suddenly feel “dead”; canker sores; the absolute weirdest noises eminating from my intestines after I ate; and an overall feeling that I was “toxic” and slowly dying! I didn’t follow up with a biopsy because it was pretty apparent from the severity of my symptoms that there was, indeed, already substantial intestinal damage. So I never got that “official” celiac diagnosis, even though I’m convinced that’s what it was. In the three years since going off gluten, another sister took a DNA test for gluten intolerence, which came back positive. And I am pretty certain from their symptoms that both my son and my granddaughter also have gluten issues, but so far have not been tested. The long-term ramifications of undiagnosed celiac/gluten intolerance are far-reaching and serious; I, too, would like to see gluten testing become as common as testing for cholesterol and high blood sugar, but as long as insurance companies continue to control the health care industry (instead of physicians and patients), and since celiac can’t be treated with an expensive drug from a big pharmaceutical company, routine testing will remain only a dream…..

  21. I was tested by Enterolab after long illness of diarrhea, stomach pain, etc. Diagnosis, not celiac, but gluten sensitivity with double DQ-1 genes. Went on the gluten free and dairy free diet of which helped for awhile, but then eventually had to give up all grains, as all grains do contain gluten, even rice and corn. Just going wheat free does not always take care of the problem. I now eat just grass fed meats and fresh organic fruits and vegetables. No packaged foods of any kind. It all does help, but no quick fix.

  22. I am not Celiac, but I did a test from Enterolab and was diagniosed that I have a Gluten Sensitivily. I immediatly got off of Gluten and I fell much better. One weekend after being off of gluten for about a year i decided to eat gluten containing foods for a whole weekend. The next week i couldn’t get off of the couch. I said the food was good, but not that good…..I am better off without it.

  23. My son was born with celiac and it took a year for the pediatrician to diagnose him. Finally a new one did and he started to thrive. I have had symptoms for years and finally decided to try a GF diet. My gastro doctor told me I didn’t have celiac, but I know what happened when I ate gluten as well as dairy. Have been off gluten & dairy for years and feel great. When tested i came out negative, but would not go back on gluten to really test. My grandson also has it.Doctor said he didn’t but that if gluten and dairy bothered him, then keep him off it. Doctors in US still don’t really understand it and think we are odd. In Italy they test each child for celiac. Way ahead of us.

  24. I am gluten-intolerant and I have spastic colon, an irritable bowel disease, that like gluten-intolerance, is stress-triggered. I have DH, not Celiac. I was tested for Celiac, but it came back negative. I have a cousin who is gluten-intolerant and I suspect my mother is as well, but she refuses to be tested. She’d much rather complain about how sick she is, than to be gluten-free. If only being gluten-free would get rid of spastic colon, but it doesn’t. Many of the symptoms are the same, bloating, cramps, severe pain, and “attacks” that make you wish you were dead instead of living through them, but fortunately, no diarrhea. Surprisingly, DH is not entirely controllable with medication and diet change. As long as the stress is around, so are the horrible sores. I have scars everywhere. Tanning does shorten the life of the sores though. Even my dermatologist didn’t yell at me for tanning when I told him I could get rid of the sores in 2-3 weeks instead of 2-3 months! I am happy Celiacs can get so much relief from the gluten-free diet, but the diet has made only some change in my sores. I’m stuck with the diet because if I go back to eating gluten, I will be covered in head to toe sores again. So i get only partial relief from the diet.

  25. For those who do not want to go on a gluten challenge after eating gluten-free to obtain accurate test results, you may want to consider doing genetic testing. Genetic testing will not diagnose celiac disease, but it will rule it out. If you do NOT have the gene, you most likely could not have celiac disease. If you DO have the gene and are experiencing symptoms, I would think that’s a pretty strong indication that you do have it. For more info about genetic testing, go to MyCeliacID.com There is an $80 discount if you test before March 31st. I know of two individuals who at first tested negative for CD, but tested positive the second time they were tested.

  26. My Sister has celiac and I’ve been tested for the disease a number of times. I’ve been negative both through blood testing as well as a colonoscopy. I’ve been thoroughly poked and prodded but always the same result- negative. However, each Lent for the last 3 years I’ve given up Gluten to Bong with my sister and for those 40 days my symptoms seem to subside. there’s no doubt in my mind that this study has firm ground to stand on…

  27. After suffering severe loose bowels from time to time, Mayo Clinic finally confirmed my problem as Eosinophilic Gastroenteritis. Any Gastroenteroogist could have found it, but they don’t ask to the test.
    All I must do is observe a glutin free diet. No medicines!
    Ask for the test!!!

  28. I am Soy intolerant, but I also cut out gluten. I had severe intestinal issues for years. My chiropractor thought it might be celiac and he gave me a saliva test which tested for the major 8 allergins. It came back soy instead of gluten. My sister took the saliva test at the same time and she is gluten intolerant and soon after she tested my niece. She too is gluten intolerant. We finally talked our youngest sister and our mother into getting the saliva test done and they are both soy, gluten, milk and egg intolerant. I cut out gluten because I have fibromyalgia and by being gluten free, my joints aren’t as tight. I think that a saliva test should be given regularly by your doctor, but I guess since they can’t write a RX for it and get that kick back and also your continuous returns because you can’t find out what’s wrong, they wouldn’t be able to afford their life styles. I even had on specialist tell me that a saliva test was “fringe” science and that food intolerances were all in peoples heads. He said he feared for my nutrition if I wasn’t eating soy and gluten. What a quack! *My chiropractor is my Hero!!

  29. I had a similar experience as Greg posted earlier. After a couple of years of IBS symptoms, weight loss, and all the traditional tests by doctors I wa pretty miserable and unhealthy. No one had even mentioned gluten. I tried another doctor who ran a test for celiac. I was very borderline positive-really not enough for a diagnosis but it got me on the right trail. With Enterolab testing and my own trial and error, I am convinced gluten is the source of all my GI problems. It takes a lot of patience and diligence sometimes to reach that conclusion. I have been GF for 10 years now and I haven’t had any more problems. I don’t miss the gluten at all.

  30. I started eating a gluten free diet when I found out I had osteoporosis at age 40! Once I started eating a gluten free diet the amount of energy I had was amazing! I hadn’t felt that good in a very long time. Although I never had gastro problems, and therefore did not test for Celiac disease, I’m doing amazing now. My osteoporosis hasn’t gotten better, but it is at a stand still. I had not idea I was sensitive to gluten.

  31. I’ve suffered from severe gastrointestional issues since I was a baby. At 14, a doctor diagnosed me with IBS, but over the next 12 years I would get violently sick within 10 minutes of eating. Everytime I ate, I’d lose the food rapidly but gained 20 lbs in 6 months. I finally went to a gastrointestional doctor. He ran every blood test in the book. Thyroid was completely normal, not pregnant, so he scheduled me for an endoscopy to check for Ciliac’s. Results came back negative. He ruled out I did not suffer from a Gluten problem. He was left baffled. I did a process of elimination & started eating Gluten Free foods. For the first time in 12 years, I did NOT get sick after eating. I was able to keep food in and didn’t suffer from severe stomach pains. I’ve been on a Gluten Free diet for the past 7 months & have never felt better. I just wish that a lot more restaurants would jump on the GF bandwagon. Very interesting article.

  32. My GF diet started right after an endoscopy/colonoscopy checking for bleeding as I was anemic and my MD couldn’t find reason( I do not know if they did a biopsy for CD or not) my Gastro said he may do camera pill. I looked up reasons why and one was CD, so I figured I could stop eating gluten and have not had it for 2 years-I immediately felt better and would never go back. Long story short-they found a 23 cm mass in my adrenal gland ( which I assumed was the reason for the anemia) after my visit (1.5 years later) with an oncologist that specializes in my diagnosis informed me that the kind of mass I had doesn’t cause bleeding/anemia and I most likely do have CD, as my anemia has disappeared since starting the diet. Either way I will never go back.

  33. I didn’t realize the symptoms I’ve had for years could possibly be related to gluten until after I had my gallbladder out. I couldn’t eat anything at all without having to know where a bathroom was. God forbid I ate outside the house. It was awful. After many trips to the doctor, but no test for Celiac, my doctor suggested I try a GF diet. Within a week I felt 100 % better! I’ve discovered through trial and error that I’m more intolerant than truly Celiac. I refuse to chow down on the old food I used to eat just to test for it and feel awful. I can, however, indulge in the occasional piece of bread or bite of cake without the horrific symptoms prior to going GF, which is why I don’t think I’m truly Celiac, just intolerant. It’s nice to know there’s some truth to there being ‘intolerance.’

  34. I’ve ALWAYS had pink, itchy skin. I remember in kindergarten, I colored myself with a bright pink crayon, and the teacher said, “Why not peach?” I pointed to myself and said, “Because I’m PINK. Just look.”

    Thirty years later, my daughter was diagnosed with celiac at age 2. I was tested too, but the results were negative. Yet, for the first time in my 32-year-old life, my skin tone changed to more of a peachy complexion–no longer pink and itchy–as long as I ate GF with my daughter. Once I went back on gluten (like on a vacation or whatever), my skin turned pink and itchy again. I may never get a diagnosis of celiac, but my physical appearance is so obvious, a person would have to be blind not to notice the difference.

    To heck with science. This is pure common sense.

  35. I was diagnosed with severe gluten intolerance just 8 months ago and I have benefited enorrmously. I lost 12 pounds in 1 month, cholesterol dropped 50 points, my skin stopped itching and the breakouts disappeared. The frequent stomach aches, sinus infections have since stopped. The blood tests showed I was deficient in Vit B, D, zinc, gastrin and HCL, low adrenal function. I read alot on gluten intolerance and celiac; attended the local chapter of Celiac support group and found out that my symptoms were so hauntingly similar to many members with Celiac. I don’t see the need to do the biopsy with the endoscopy as it would not be covered by insurance and I know to stay away from gluten. The blood test for Celiac was negative after being gluten free for 3 months, but I heard that is often not accurate. And I really don’t want to eat gluten for that test as I would get very sick again. The wheat hybrids we eat today have 3 times the gluten of 100 years ago. No small wonder so many people are becoming gluten intolerant. I see no other way to survive then to avoid gluten for my lifetime. There is no cure. Just because people don’t feel anything doesn’t mean there is no damage being done. Even gluten intolerance can cause malabsorption. I’m just so glad to be alive.

  36. I was unaware of Celiacs or Gluten intolerance until my son married a wonderful young women who has had Celiacs disease since she was 2 or 3. Upon internet research and reading the numerous various symptoms, I wondered if I had Celiacs or intolerance. I started eating gluten free as much as possible and I avoided dairy also. I am amazed how much better I feel. I did have the blood test performed for Celiacs but it came back negative. I am over 50 years old and would have loved to have learned about gluten years ago. On reflection, I believe my mother had it too. My sister has also cut back on gluten and feels better. I am so thankful for meeting my daughter-in-law.

  37. I’m not aware of research in this area, but I do have a friend who removed gluten from her diet because of endometriosis. She said it made a world of difference in the overall inflammation, bowel difficulties, and abdominal pain she regularly experienced.

  38. I had “IBS” for 25+ years as well as GERD, chronic heartburn, terrible sub-sternal pain, hypothyroidism and goiter with Hashimoto’s Thyroiditis (resulting in subtotal thyroidectomy), itchy nodules on my elbows, infertility, hives, endometriosis. In the 80’s and 90’s I saw many GI Drs, Internists, a Nutrtitionist, a Homeopath, and fertility experts with no real help – just more meds. I don’t think gluten was even on their radar screen. Then 5 yrs ago I developed terribly itchy “eczema” on my hands, chronic hives and terrible spells of vertigo. More visits to the Internist, Dermatologists, Allergist and Acupuncturists. Allergy testing by my Internist and my Allergist sent me in wrong directions for over 2 yrs. I was told I was allergic to various foods (tomato, beef, chicken, oranges, etc, etc) but no mention of dairy, wheat or gluten. Following their recommendations, I stayed away from these foods for 2 yrs. and still had no relief.
    Long story short, eventually I figured out that gluten and dairy were the culprits. I stopped gluten on my own and 9 weeks later returned to a pre-scheduled appt. with my out of town Internist. My celiac blood test was then negative and I refused to go back on gluten for further testing as I was feeling so much better. Then my allergist told me I didn’t fit the typical celiac profile (“inability to gain weight with malabsorption”) so gluten couldn’t possibly be my problem even though my hands were remarkably improved..
    I have now been GFDF for 20 months and have never felt better! All my symptoms have disappeared (of course still on thyroid med)
    As a side note…my mother in law was diagnosed w/ celiac several yrs ago, so I suggested to my husband that even though he had no GI or skin issues, he might try going without gluten to “just see what happens”. On the 5th night of being GF, he stopped snoring! He used to snore like a grizzly bear with sleep apnea. Now when he gets glutenized while traveling, he feels a heavy thickness in his throat. He says he sleeps so much better being GF and so do I!

  39. I’ve been gluten-free for a year and a half now and am feeling much better. I can tell when I accidentally eat something with gluten, because it sends me to the bathroom the next morning. Years ago I was told that I had IBS and to stay away from spicey food. I still got that bloated feeling after eating and figured out that I was lactose intolerant. Not eating dairy has helped tremendously. About 5 years ago I had a bout with C-Diff and got worse. Does anyone know of any connection between C-Diff and Celiacs or gluten intolerance? My blood test for celiacs was negative and I don’t want to start eating gluten and get sick in order to do the endoscopy.

  40. Although some people feel the endoscopes are not necessary, in my husband’s case, the endoscope did positively identify celiac disease. And while he was under for the endoscope, they did a colonoscopy just to check that end out. That colonoscopy saved his life!! They found a large, flat lesion in his large intestine. He did not have other indicators of colon cancer. They removed 18 inches of his intestine and so far he’s been cancer free. The reason they did the colonoscopy along with the endoscope is cause celiac is known to cause colon cancer. My husband also was diagnosed with osteoporosis in his 50’s. Another result of celiac!! Through medications, they were able to improve his condition from osteoporosis to osteopenia (pre-osteoporosis). So if you are diagnosed in later life, it is wise to have a good doctor that will be watching for other conditions that can be caused by celiac. We were lucky to find a gastroenterologist that was from Australia and was very familiar with celiac disease.

  41. My gastro told me he took a sample of my small intestine and it was neg for celiac. I told him I was down to a diet of bread and water and was still sick. He told me I had IBS and microscopic colitis and put me on bowel meds and imodium pills. Which I took for years and years. I developed auto immune thyroid disease. I started having other auto immune issues. I found that I felt pretty good on a low carb diet. hmmm wonder why? no bread or pasta. The symptoms would disappear. I decided to try a gluten free diet and lo and behold no symptoms at all. The longer I had gluten in my life the sicker I became. I’ve done some reading and found that auto immune thyroid and gluten intolerance go hand and hand. If you don’t address the problem you will continue to become sicker and sicker. so if you are looking to the medical community for help don’t. Just eat a gluten free diet. I was failed by that medical community that just pumped me with drugs for over 30 years that I didn’t need. A simple diet change was all it took. Now I am stuck taking thyroid hormone because that will never heal. Undiagnosed gluten will affect every cell of your body in a bad and destructive way. Dump the pills and bowel anti inflamitories and try the gluten free diet and see if it works for you.

  42. My family’s un-official diagnosis is all due to my daughter. At just 4months old, she was a sick little mess. Projectile vomiting, constipation and then diarrhea, bloating, gas, weight loss and screaming in pain day and night. I was breast feeding her, so one doctor suggested I go dairy free. She had little improvement. Then she started having slightly elevated liver numbers on her bloodwork. We were seeing Doctor after Doctor without answers. Finally I ran across CD while doing research at home. When I mentioned this to the first few Doctors they acted like I was crazy thinking the small amount of gluten my baby got from me would cause all this. It wasn’t until we saw a wonderful FNP that we got answers…she said “As someone who has CD, I think your baby has CD”. The change was instant. My little girl is now a happy thriving GF kiddo. And as a result, myself, my son, and other family members, have found an end to our Headaches, Bloating, fatigue, and much more. It also goes to show that there is a family connection.

  43. I had celiac symptoms 5.5 years ago (tiredness, stomach cramps, weight loss, bloating, diarrhea). I went to about a dozen doctors and no one could figure it out. I finally went to a gastroenterologist who specializes in celiac disease. I had both a blood test and an endoscopy, both of which were negative, although my doctor thought that the test results showed significant damage to my intestines, and with a couple more years of eating gluten, my tests would become positive. I got a genetic test done, which came back positive for one of the “celiac genes” so I went on a gf diet. It has now been 4 years since I’ve been gluten free and ALL of my symptoms have gone away.

  44. I suffered for only a few short years before being diagnosed with a severe gluten sensitive enteropothy almost 7years ago. I had been complaining to my doctor about symptoms for almost 2 1/2 years (a short amount of time at that point before being tested) being only prescribed fiber supplements & being told stress was the culprit. However, my symptoms got more & more severe; I had lost 15 lbs. & was already a thin person. I felt sick every morning & night. It was affecting my work & social life. I could not concentrate & was exhausted & depressed all the time! I was finally referred to a gastroenterologist but while waiting for the appointment, asked if I could see dietician to help me find foods I could digest. It was her who suggested I might be gluten intolerant although I was told it was “very rare.” The test results came back positive for the gluten antibodies & I immediately stopped eating gluten. Within 2 weeks, I was feeling amazingly better. Then when I had the appointment with the gastro doctor, he sent me only for a colonoscopy to “rule out other GI issues” and because my “insurance would only pay for one test.” I forever regretted not pursuing this further with my insurance. The test came back negative but of course it was the wrong part of my intestines to have been tested. He told me that I probably had celiac disease & if the GF diet was working, that I should stick to it. I felt 90% better & gained back all my weight & then some but was always bothered that I did not have a definitive diagnosis. About two years ago, an at home genetic test for Celiac Disease became available & I immediately got tested. The results came back negative! I was very surprised by this. I still stick religiously to a GF diet & had noticed some new symptoms in the last year or so & have since has some further testing to discover soy & casein intolerances also – way harder to stick to than the GF diet! The one thing I would spend resources on, is education of physicians & the restaurant industry so that no one has to go without the proper diagnosis & testing & can live a normal social life while dining out in restaurants. Things are getting better everywhere & I feel lucky to have been a part of this GF diet thing from the ground up & diagnosed when I was.

  45. this is me! Its nice to know someone is looking out for us children of a lesser disease. After having every ‘oscopy known to man, beast and alien, resulting in no diagnosis, my Dr. sent me off with a shrug and “try living gluten free for about 6 weeks then come back and see me”. I don’t have celiac, but he thinks its gluten intolerance. After 3 weeks I am seeing some rather surprising changes in my GI problems, for the better. I am told at 6 weeks things really start to change, and I cannot wait!

  46. I have had major issues over the years between being epileptic from early childhood, being obese, having female issues and number of other issues. You get the picture. I am in my late 50’s and it took my chiropractor to diagnose what the main culprit was. My doctors for all these years just did the its just the way your body is so cope with it routine. My chiropractor realized I was gluten intolerant and suggested I go gluten free. After being on it for a week I noticed weight was coming off, and bloating was going away. Migraines which I had been experiencing frequently also vanished. Also was able to burp which I had never been able to do before. Have been gluten free now for 11 months and not going back. Occasionally I do get something that has gluten in it that I didn’t screen properly and I get the stomach cramps for 14 hours. So no definitely know gluten is the culprit in my life. More studies need to be done. I agree with some of the other comments about screenings for CD should be done with physicals starting with infancy and every 10 yrs or so, More frequently if signs of CD starting to develop.

  47. How Many people are still listening to the Doctors and believing what they tell them. Listen people we are the only ones knowing what is going on in our bodies. I try to tell others that are having symptoms and there reply….The doctor didn’t say to give up wheat. I shake my head and walk away. I think that this will be a pandemic issue….not only with stomach ailments Eczema, Lupus, Chrons Disease are all issues concerning wheat. I think that its probably effecting more like 1 out of 4

  48. I tested negative to the blood tests, but I get terrible stomach aches the majority of the time when I eat foods containing gluten. I have since I was little. When I completely avoid gluten, I hardly ever have stomach problems.

Leave a Reply

Your email address will not be published. Required fields are marked *

© 2010-2015 Triumph Dining