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  • Jefferson Adams
    Jefferson Adams

    Study Shows Gluten Intolerance Without Celiac Disease

    Reviewed and edited by a celiac disease expert.

    Caption: New study on gluten intolerance without celiac disease appears in the latest AJG.

    Celiac.com 02/14/2011 - In what may seem for some like an obvious finding, a team of Australian researchers has shown that people can suffer gluten intolerance without having celiac disease. Their study is published in The American Journal of Gastroenterology.

    I say obvious, because many in the celiac and surrounding community have long understood and accepted the concept of gluten-intolerance as distinct from celiac disease. Surprisingly, there has been very little scientific research to establish the existence of gluten-intolerance as distinct from celiac disease. That is changing, and the recent Australian study offers some support for gluten-intolerance as distinct from celiac disease.

    For their study, a team of researchers led by Peter Gibson, professor of medicine at Eastern Health Clinical School at Monash University in Australia, recruited 34 people with irritable bowel syndrome, but who were clinically proven to be free of celiac disease. All participants had previously benefited from a gluten-free diet.

    The 34 volunteers were all fed bread and muffins, half of which contained gluten, half of which were gluten-free. Nearly 70 per cent of the volunteers who ate the gluten reported pain, bloating, toilet problems and extreme tiredness.

    ''Gluten is indeed a trigger of gut symptoms and tiredness,'' the researchers concluded. Professor Gibson said: ''These symptoms have a big impact on quality of life. But conservative medicine has not been so good at dealing with this because we haven't had any evidence.''

    A number of the volunteers had sought help from alternative health practitioners, a fact that impaired recruitment of volunteers, as many of these folks had adopted a gluten-free diet without proving or disproving celiac disease via colonoscopy and biopsy.

    It was important for the team to exclude celiac disease for several reasons, including the fact that although it was safe to use gluten to test people who may have an intolerance, it could harm people with celiac disease.

    "If you go back on gluten while you have celiac disease - even if you only eat a few pieces of bread - you will damage your body and undo many months of healing," Professor Gibson said.

    For that reason, and also to prove gluten intolerance alone was the symptom cause, the team recruited people  clinically proven to be free of celiac disease, and who were already on gluten-free diets.

    For those patients with irritable bowel syndrome, excluding celiac disease, who were symptomatically controlled on a gluten-free diet, the team crafted a double-blind, randomized, placebo-controlled re-challenge trial.

    Participants received either gluten or placebo in the form of two bread slices plus one muffin per day with a gluten-free diet for up to 6 weeks. The team evaluated symptoms using a visual analog scale and markers of intestinal inflammation, injury, and immune activation monitoring.

    A total of 4 men and 30 women between the ages of 29–59-years old completed the study as per protocol. Overall, 56% showed human leukocyte antigen (HLA)-DQ2 and/or HLA-DQ8. Adherence to diet and supplements was very high.

    Of 19 patients (68%) in the gluten-consuming group, 13 reported that symptoms were not adequately controlled compared with 6 of 15 (40%) on placebo (P=0.0001; generalized estimating equation).

    On a visual analog scale, patients were significantly worse within one week of consuming gluten for overall symptoms (P=0.047), pain (P=0.016), bloating (P=0.031), satisfaction with stool consistency (P=0.024), and tiredness (P=0.001).

    In no cases did gluten-consumption trigger anti-gliadin antibodies. Moreover, there where were no significant changes in fecal lactoferrin, levels of celiac antibodies, highly sensitive C-reactive protein, or intestinal permeability. There were no differences in any end point in individuals with the DQ2/DQ8 and those without.

    Gibson calls the general lack of research into gluten intolerance "almost unbelievable." He plans to now investigate the prevalence of non-celiac gluten intolerance, why it occurs and whether low levels of gluten can be eaten safely.


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    So here we have more questions. Can our allergic community have more unknown facts about food allergies and sensitivities? There seems to be more research into foods as triggers for non-life threatening reactions. It just seems that instead of looking at the reactions, some one should be looking at the foods. Where are the food products coming from and how well regulated are they? Are the regulations in the best interest of our health too?

    At least we are now seeing more gluten-free and allergy friendly foods to help us through this uncertainty.

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    5 stars for the presentation by Jefferson Adams. 2 stars for the actual researchers. Why? Because anyone who has ever been on a gluten-free diet can tell the difference between regular bread and gluten-free bread, and this may influence their complaints. So, if the researchers really wanted this to be double-blind and placebo controlled, they should have given gluten in a capsule to the experimental group, and an identical capsule containing something like rice flour to the control group.

     

    This was bad experimental design!

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    Here is my concern. I have no idea which I am - celiac or gluten intolerant. For 7 months I suffered with stomach issues and lost 20 pounds. A GI doctor tested me for everything BUT celiac. I lived on noodle soup and crackers and was often violently ill. After my sister suggested I try a gluten free diet (which I had never heard of 10 years ago), I did so and became well immediately. When I attempted to see a celiac specialist, I had to wait 2 months. I was told to continue the diet until I saw the specialist. Once I saw the specialist, he told me that I had return to a gluten diet to accurately diagnose me. I told him to dig a hole and throw me in as I would not touch gluten. He then charted me as "celiac" but I truly don't know. I think the medical world in America still has a long way to go in researching possible treatment/antidote for celiac disease and gluten intolerance.

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    5 stars for the presentation by Jefferson Adams. 2 stars for the actual researchers. Why? Because anyone who has ever been on a gluten-free diet can tell the difference between regular bread and gluten-free bread, and this may influence their complaints. So, if the researchers really wanted this to be double-blind and placebo controlled, they should have given gluten in a capsule to the experimental group, and an identical capsule containing something like rice flour to the control group.

     

    This was bad experimental design!

    As soon as I read the article I said uh-oh, don't they know we gluten-free's can taste the difference!

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    I am gluten intolerant and because I do not get sick after ingesting gluten, it makes it easier for me to cheat. I can stay gluten-free only so long and my craving for a good sandwich just takes over.It would be very nice to know that cheating occasionally isn't doing the same damage as if I were a true celiac. I agree with Hallie's comment. So far there is no gluten-free bread or muffin that tastes the same as that made from wheat. I would agree that a pill would have been the way to go. But keep on trying with the research. I have hope that there will be something like Lactaid for milk intolerance.

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    Interesting article.

     

    I call myself gluten intolerant though have never had an 'official' diagnosis. I tried gluten free diet three years ago, upon recommendation from my internist , as a help for peripheral neuropathy in my feet. I never tested for gluten intolerance. However, about two years after adopting the gluten free diet, I did have the test for HLA-DQ2 and HLA-DQ8 and found I was negative for being celiac. It was important to me to know because I have children and grand children.

     

    Last summer when I was not settling in to sleep because I felt like a supplement I had taken was 'stuck in my throat', I got up and ate one piece of toast from loaf of bread that was labeled "flourless." I found out the next day that it contained wheat sprouts instead of the usual flour. After eating it, I returned to bed and fell asleep. About a half to one hour after consuming the bread, I awoke very nauseated and ended up spending the next half hour or so hanging over the toilet as I vomited up everything in my stomach. I have no real explanation for this, but decided it proved that I am definitely gluten intolerant. I now read labels more thoroughly.

     

    The flourless bread was shelved with gluten free breads at the store and thus I did not questions it as I should have. This incident happened in the night and I was not the least sick when went to bed that night, nor was I when I got up the next morning.

     

    By the way, I no longer have any burning in my feet and not much parastheia either. I am committed to staying on a gluten free diet.

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    Am I understanding that if you are gluten intolerant, without celiac disease, there would be no antibodies present (in blood, stool or otherwise)?

    Also, agree with Hallie. Even people who have never been on gluten free diets would realize that gluten free bread is different. Those sausages with wheat fillers would have done the trick!

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    5 stars for the presentation by Jefferson Adams. 2 stars for the actual researchers. Why? Because anyone who has ever been on a gluten-free diet can tell the difference between regular bread and gluten-free bread, and this may influence their complaints. So, if the researchers really wanted this to be double-blind and placebo controlled, they should have given gluten in a capsule to the experimental group, and an identical capsule containing something like rice flour to the control group.

     

    This was bad experimental design!

    Actually, there are gluten-free breads which are very similar to French bread, and gluten-free muffins which are essentially indistinguishable from regular ones. Perhaps they made the regular muffins and bread more similar to the gluten-free controls. We'd have to read the whole article to find out.

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    I am gluten intolerant and because I do not get sick after ingesting gluten, it makes it easier for me to cheat. I can stay gluten-free only so long and my craving for a good sandwich just takes over.It would be very nice to know that cheating occasionally isn't doing the same damage as if I were a true celiac. I agree with Hallie's comment. So far there is no gluten-free bread or muffin that tastes the same as that made from wheat. I would agree that a pill would have been the way to go. But keep on trying with the research. I have hope that there will be something like Lactaid for milk intolerance.

    I can so identify with this. At this point, I'm still waiting for results of the biopsy. But an EGD showed flattening of the duodenum, which had never shown up before. I didn't even know what it meant. I have no typical celiac symptoms. In fact, I am overweight. I don't notice any ill effects from ingesting gluten. And I am a carb/bread lover from way back. Oddly enough, my brother was just diagnosed with severe celiac. He had been untreated for years, and was very ill; it was thought he had cancer. He's doing worlds better now; he is extremely cautious after having a bad reaction that left him sick for more than a week. Seems I read somewhere they are working on developing a vaccine for celiac. Wouldn't that be wonderful?

    No doubt there will be a laundry list of other foods to avoid coming after they do blood testing. And every gluten-free bread I've tried is yuck. I thought the same thing when I read about that study. I can always tell a gluten-free product. It doesn't help that they douse a lot of the baked goods with sugar to disguise the taste. Eating gluten-free doesn't mean eating healthy.

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    I am glad someone is at last taking this subject seriously. My four year old grandson has been tested for celiac disease but it was confirmed that he did not have it. However, we (his family) know that if he eats gluten products he becomes twitchy (really mild spasms); especially in his sleep, his intestines grumble really badly, he becomes more hyperactive and naughty and when he drinks milk it hurts his stomach. If, however, we maintain his gluten-free diet, he is calm, not at all twitchy, you never hear his stomach grumble and when he drinks milk, he is fine. It is annoying that the doctors do recognise gluten intolerance if celiac is not present. So I say well done for the research. Much more is needed, especially with children and gluten intolerance to convince the medical world.

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    Guest Eugenia Rodgers

    Posted

    Interesting. I have severe systematic shin splints, tumor knots behind both knees and both sides of groin area, and extreme exhaustion whenever I eat gluten. This reaction has been going on since Spring 2009. Also, I deal with IBS and have been diagnosed with Rocky Mountain Spotted Fever last week. I have been looking since 2009 for someone to listen to me. Thank you.

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  • About Me

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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