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    Jefferson Adams
    Jefferson Adams

    How Much Gluten is Safe for Folks with Celiac Disease?

    Reviewed and edited by a celiac disease expert.

    Celiac.com 10/07/2008 - Even though nearly 1 out of every 100 people in the world suffers from celiac disease, proper celiac diagnosis can be difficult to diagnose based on symptoms alone, an is often delayed for years. In fact, in the U.S., the average amount of time from first onset of celiac symptoms to a diagnosis for celiac disease is 10 years.

    Currently, the only accepted treatment for celiac disease is a life-long gluten-free diet. However, gluten is present in many processed foods, and many patients with celiac disease are regularly exposed to trace amounts of gluten via contamination and other means.

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    One of the challenges of maintaining a life-long diet free of gluten is that so many foods and food products contain gluten. Examples include dried fruit and fruit pie fillings, cold cuts, sandwich spreads, canned meats, many salad dressings and condiments, prepared soups, flavored yogurt, and even flavored instant coffees and herbal teas.

    Following a “strict” gluten-free diet is no guarantee against mucosal damage associated with celiac disease. In two different studies of gluten-free diets, nearly half of the subjects showed villous atrophy. However, the precise level of gluten in each diet was not measured.

    The World Health Organization (WHO) defines naturally gluten-free foods as those with 20 parts of gluten per million (PPM) or less, whereas foods that have been artificially rendered gluten-free must have no more than 200 PPM of gluten. Now, this standard is not universally accepted, in part because of the difficulty of precisely determining the amount of gluten present in different foods. Still, it is obvious that a large number of patients with celiac disease can tolerate foods with minimal amounts of gluten.

    Researchers A. K. Akobeng, and A. G. Thomas recently set out to examine the threshold for gluten consumption among patients with celiac disease by reviewing the results of a number of previous studies.

    In one previous study, researchers examined 4,126 asymptomatic individuals, and found celiac disease in about 1 of 133 of them. The rate for patients with gastrointestinal (GI) symptoms was 1 in 56 subjects. For first-degree relatives of patients with celiac disease, the rate jumped to 1 in 22, while 1 in 39 second-degree relatives tested positive for celiac disease. These figures reflect the existence of a genetic predisposition for the development of celiac disease, as most patients who have celiac disease expressing human leukocyte antigen DQ2 or DQ8 haplotypes.

    One population-based study of 1,612 patients with celiac disease that sheds some light on the demographics and symptoms of the disease shows that nearly three times as many women as men develop celiac disease, while about a third of celiac sufferers had seen 2 or more gastroenterologists. In that study, symptoms persisted for an average of 11 years before a diagnosis of celiac disease.

    Often, such delays are due to the fact that symptoms of celiac disease are similar to many common GI disorders. In addition to the diarrhea experienced by 85% of celiac sufferers, other common symptoms are abdominal pain and distension, Borborygmi, flatulence, and weight loss. Because celiac disease is tied to numerous medical conditions outside of the GI tract, including osteoporosis, iron-deficiency anemia, neuropathy, asthma, and dermatitis herpetiformis, early and accurate diagnosis is important.

    When people with celiac disease eat wheat, rye, or barley, the gluten proteins in these grains sparks inflammation in a part of the small intestine called the lamina propria, which brings about symptoms of the disease.

    In 2007, clinicians proposed new diagnostic guidelines to help doctors diagnose celiac disease more accurately. Under these guidelines, the gliadin antibodies previously used to test for celiac disease have been abandoned because of poor sensitivity and specificity. Serologic testing that focuses on immunoglobulin (Ig)A endomysial antibody, or IgA tissue transglutaminase (tTG) antibody, has been shown to have sensitivity and specificity values above 95% for celiac disease.

    The Review
    Researchers examined electronic databases using a broad search strategy that included randomized controlled trials, cohort studies, case control studies, and cross-sectional studies. In all cases, celiac disease was clinically confirmed through small intestinal histology.

    Initial research uncovered 35 studies, but only 13 were included for analysis. Most studies were excluded because they were reviews of the diet in celiac disease. Of the studies included in the full analysis, 7 were cross-sectional in design and 3 were randomized controlled trials. The research team gauged the cross-sectional studies to be at moderate risk for bias. Because of the varied nature of the results of the many studies, it was not possible to conduct a pooled statistical analysis of the results. The studies tended to focus more on histologic changes instead of patient symptoms of celiac disease. The review indicated that the total amount of gluten consumed, as opposed to the levels of gluten in individual foods, is the key factor connected with histologic abnormalities in the small intestine. Consumption of gluten at levels of 200 mg/day or more was clearly tied to the development of intestinal abnormalities. Whereas these changes usually show up within a few weeks, one trial that looked at different levels of gluten consumption showed differences in villous height/crypt depth ratio within just one week.

    The results of research evaluating consumption of lower levels of gluten have been more uneven. In one study, more than half of subjects consuming only 10 mg of gluten per day experienced worsening of their villous height/crypt ratio. However, another study showed no histologic abnormalities among patients who ingested an average of 34 mg of gluten per day.

    Conclusion
    The current study basically confirms other recent examinations of the limits of gluten consumption in celiac disease, including one study that recommended a daily gluten consumption limit between 10 mg and 100 mg, and another, based on just 83 subjects, that indicated that the mucosa of the small intestine showed no negative long-term changes when subjects consumed up to 80mg of gluten a day.

    While it’s tough to draw specific conclusions from the current study, it seems clear that the standard of 200 PPM or less of gluten in some foods labeled as gluten-free will not protect most celiac disease patients. Instead, the study suggests that a new standard set at a maximum of 20 PPM of gluten will equate to an approximate daily gluten consumption of 6 mg. The body of science suggests that consuming 6mg per day of gluten intake would not promote mucosal abnormalities among most people with celiac disease.

    While more conservative, the 6mg per day figure seems to offer the best assurance of avoiding intestinal damage of any kind. Still, the researchers noted the need for more research on the threshold of gluten consumption for people with celiac disease. They specifically noted that standardization of outcomes along with trials to compare particular concentrations of dietary gluten would be helpful.

    Until the results of such research, this review offers a reasonable guideline as the threshold gluten consumption for people with celiac disease.

    References
    1. Lo W, Sano K, Lebwohl B, Diamond B, Green PH. Changing presentation of adult celiac disease. Dig Dis Sci 2003; 48:395-8.

    Aliment Pharmacol Ther. 2008; 27:1044-1052. Epub 2008 February 29.




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    Guest Anna

    This article is great! I've always wondered about the 20 ppm issue.

    Thank you.

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    Guest patty Brandt

    Posted

    Very Good... I am going to forward this to my sisters.

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    Guest Diane

    I can not have even one micron of gluten per month without being sick for the whole month! To suggest that there is an acceptable daily level is mind-boggling!

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    Guest All

    I eat foods like cornflakes. It's only barley malt, and it's not like I eat the cereal excessively, so I figure there's nothing worth getting too worked up about with this food in terms of gluten.

     

    My blood test is negative for celiac disease despite this 'cheating' (so far I have only tested positive during two separate 'on gluten' trials, when major stuff like pasta or bread was included in my diet). I am asymptomatic, but I do accept the fact that even if I can't feel it, bread is actually damaging my insides. However, I genuinely believe that there might be different levels of sensitivity, and I that I might actually be tolerant enough to not have to worry about cross-contamination, or using a toaster that's also used with regular bread. I feel quite alone in this belief. Is there no one out there who thinks a toaster not devoted to gluten free use is not the end of the world?

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    Guest Lori Smith

    Posted

    I agree that there may be varying levels of sensitivity, just as in asthma and other allergy - related health issues. When I was first diagnosed, I tried to keep to the strict gluten free diet - and hated it. I came to the conclusion that a longer life, lived miserably, was not worth it. I can eat wheat products occasionally with few side effects; if I plan ahead, I take Imodium beforehand to stave off the worst of it. I have not had other body systems involved thus far, no rash or such.

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    Guest Maggie

    I too have been diagnosed with Celiac and was asymptomatic up to now. When I went on the gluten free diet I too was as miserable as Lori and also felt alone in my belief that some gluten was OK - I too have decided that a longer more miserable life was not worth the misery now. So really glad to hear I am not alone in those beliefs. Also when I was on the gluten free diet I GOT the symptoms I did not have before!! Which was REALLY strange to me.

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    Guest Kim

    I could imagine that a person with no symptoms would think that a person reacting from a crumb in a toaster is paranoid. But there are certainly different levels of sensitivity. As long as you are keeping up with the testing, don't worry. But, don't think that someone else is over reacting because they use a separate toaster and watch every ingredient.

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    Guest ColoradoSue

    Posted

    I agree with Diane. I am so hypersensitive to gluten I have to avoid the bread aisle in the grocery store. That's No Joke. I was diagnosed in 2004 but I suspect I had been active for many years. You know.... like you think you have the stomach flu or ate something really bad. I can recall several incidents of lying on the bathroom floor in severe pain over the years. It wasn't until my youngest sister was diagnosed two years before I was, that I realized I had celiac disease. Unfortunately, I have passed it on to my only child who was confirmed in 2005. I hope and pray that she hasn't passed it on to my two grandsons. Genetics being what they are, she probably has. I just want to make the point that even a so-called minimal amount of gluten contamination will destroy parts of your small intestine whether you feel it or not. Extreme vigilance are the words to good health. The consequences can be deadly.

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    Guest Gina

    I would never purposely take the chance and consume even 2mg of gluten daily. Any trace amounts and I retain fluid, feel moody, and chance getting a yeast infection. I was diagnosed in Aug. 2004 and from the time I was 15-24 I had a yeast infection almost every month. Since the start of a strict gluten free diet I haven't had one, I just wouldn't chance it, it is just not worth it for me.

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    Guest peter

    Site answered most of my concerns. Thank you.

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    Guest Alice

    I am so glad to see that some others feel as I do that there must be a spectrum of reactions to gluten. I decided to broaden my menu and now when I'm out or confronted with gluten containing foods I go ahead and eat. As long as i am on a MOSTLY gluten-free diet the rest of the time I'm fine! Life is much easier that way! I don't think all of us need to be as super-strict as I first thought.

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    Guest admin
    I am so glad to see that some others feel as I do that there must be a spectrum of reactions to gluten. I decided to broaden my menu and now when I'm out or confronted with gluten containing foods I go ahead and eat. As long as i am on a MOSTLY gluten-free diet the rest of the time I'm fine! Life is much easier that way! I don't think all of us need to be as super-strict as I first thought.

    Alice: I would not recommend your approach to anyone with celiac disease or even gluten sensitivity...

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  • About Me

    Jefferson Adams

    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. His articles, essays, poems, stories and book reviews have appeared in numerous magazines, journals, and websites, including North American Project, Antioch Review, Caliban, Mississippi Review, Slate, and more. He is the author of more than 2,500 articles on celiac disease. His university coursework includes studies in science, scientific methodology, biology, anatomy, physiology, medicine, logic, and advanced research. He previously devised health and medical content for Colgate, Dove, Pfizer, Sharecare, Walgreens, and more. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of numerous books, including "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

    >VIEW ALL ARTICLES BY JEFFERSON ADAMS

     


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