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  • Jefferson Adams
    Jefferson Adams

    Seven Common Myths About Celiac Disease and Gluten-free Eating

    Reviewed and edited by a celiac disease expert.

    Celiac.com 05/27/2014 - Here are seven common myths people have about celiac disease and gluten-free eating.

    Myth #1: Rice contains gluten, and people with celiac disease and gluten-intolerance shouldn’t eat it.

    Status: FALSE.

    People with celiac disease and gluten-intolerance have adverse immune reactions to gluten proteins in wheat, rye and barley.

    Rice does contain gluten, just not the kind that causes adverse reactions in people with celiac disease and gluten-intolerance. Plain rice is fine for people with celiac disease.

    Photo: ElfQrin--Wikimedia CommonsMyth #2: A little gluten is okay for people with celiac disease and gluten-intolerance to eat.

    Status: MOSTLY FALSE.
    Gluten levels above 20 parts per million can cause adverse immune reactions and chronic damage in people with celiac disease.

    Current medical research defines gluten-levels below 20 parts per million as safe for people with celiac disease, and the FDA and other official organizations use that standard in labeling, those levels are so close to zero as to be “gluten-free.”

    The tiniest crumbs of bread far exceed 20ppm, so eating “a little” gluten is only possible by eating “gluten-free” food. In fact, the only properly recognized treatment for celiac disease is a gluten-free diet.

    Myth #3: Food made with gluten-free ingredients is safe for people with celiac disease.

    Status: FALSE
    Just because food is made with gluten-free ingredients, it is not necessarily safe for people with celiac disease. Case in point, Domino’s Pizza recently introduced gluten-free pizza crusts. However, these pizzas are prepared in the same areas and ovens as Domino’s regular pizzas, and are likely contaminated with gluten from wheat flour. These pizzas are not safe for people with celiac disease. There are many similar cases in the restaurant world. Contamination is a serious issue for some celiacs, so buyers be aware and be wary.

    Myth #4: Celiac disease is a food allergy.

    Status: FALSE
    Celiac disease is not a food allergy or an intolerance, it is an autoimmune disease. People with celiac disease suffer damage to the lining of the small intestine when they eat wheat, rye or barley. They also face higher risks for many other auto-immune conditions.

    Myth #5: Celiac disease only affects people of European ancestry

    Status: FALSE
    Celiac disease is more common in people of northern European ancestry, but it affects all ethnic groups and is found in southern Asia, the Middle East, North Africa and South America.

    Myth #6: Celiac disease is a children’s condition

    Status: FALSE
    Celiac disease can develop at any age. In fact, celiac disease is most commonly diagnosed in people aged 40-60 years old.

    Myth #7: Celiac disease can be painful, but isn't life-threatening.

    It’s true that classic celiac disease symptoms, like stomach pain, bone pain, fatigue, headaches, skin rash, and digestive issues, won’t kill patients outright. However, undiagnosed or untreated, celiac disease can trigger other autoimmune disorders, and leave patients at much greater risk of developing certain types of deadly cancer.


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    Guest Jefferson Adams

    Posted

    I am reading Dr. Alessio Fasano's new book called Gluten Freedom. On pp 126-127 he states "consuming up to 10 mg (approximately one-eighth teaspoon of flour) of gluten per day is safe for most people with celiac disease." Really?? That's a lot of bread crumbs or quite a bit of contamination in Domino's. Can this be true?? Dr. Fasano is founder of the Center for Celiac Research at Massachusetts General Hospital and visiting professor at Harvard Medical School. Am I misinterpreting what he is saying?

    That has nothing to do with rice. Also, the key words in that sentence are: "most people with celiac disease." Here's an excerpt from celiac disease.about.com:

    A 2007 study led by Dr. Alessio Fasano, who heads the University of Maryland's Center for Celiac Research, found that people who consumed 50 milligrams of gluten each day had renewed villous atrophy after 90 days, while those consuming zero gluten or 10 milligrams of gluten each day did not.

     

    Dr. Fasano and his colleagues say that many or most people with celiac disease can handle up to 10 milligrams of gluten — the equivalent of 1/8th of a teaspoon of flour, or 1/350th of that slice of bread — in their diets each day without experiencing adverse effects. The study frequently is cited as evidence that celiacs can handle "gluten-free"-labeled foods with up to 20 parts per million of gluten in them.

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    Guest Jefferson Adams

    Posted

    One of the confusions with rice is between plain unseasoned, unfortified rice vs. packaged rice that has been fortified or contains seasonings. The latter might have gluten that has been added or its various "fortifications", flavorings, or seasonings might have been cross-contaminated by gluten somewhere down the line.

    Excellent point. Plain white, brown, or wild rice alone is safe for people with celiac disease.

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    Guest Jefferson Adams

    Posted

    Jeff -- I strongly disagree with your statement of "people with celiac disease do not react to rice gluten". I have NCGS and do react to rice gluten as does a friend of mine that has celiac. Her doctor told her she was still getting gluten in her system, i.e. rice, rice cereals, etc. I believe it all has to do with the prolaines/glaumines (?) that make up rice. Wild rice is okay because it's not a grain it is a grass. People may feel better on a gluten free diet but still cause gut damage when eating rice and other grains.

    If you are truly reacting to plain rice, then you are having either a secondary sensitivity, or you are getting cross-contamination. People with celiac disease do not react to rice gluten.

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    Guest Jefferson Adams

    Posted

    I don't believe celiac disease is a "one size fits all" situation. We are still taking baby steps in fully understanding this disorder. Perhaps some celiacs can tolerate low levels of cross contamination. I cannot. I even react to inhaled gluten, making it impossible for me to feed my own livestock, since I will react to exposure to the grain dust. I also suffer from bouts of DH, which are definitely exacerbated by any exposure to gluten.

    Your comment has nothing to do with rice. Gluten sensitivity levels do vary, but there is simply zero evidence that plain rice causes adverse immune reactions in people with celiac disease.

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    Guest Jefferson Adams

    Posted

    What qualifies someone as being a "celiac expert" or a "celiac specialist"? Here's a fact for your list: Celiac disease affects each patient differently. Some are more sensitive than others. I cannot tolerate any ppm, I cannot tolerate food items that were on the unsafe list when I was diagnosed but have been moved to the safe list. 20ppm is less than 1/8th of a teaspoon. Just because someone has celiac disease doesn't mean they know it all. Just because someones career is studying celiac disease doesn't make them an expert. We are all individuals with different tolerances. As for rice, it depends on where the rice is stored before packaging. The same for raw beans! I wish those who make statements would use the term "for most with celiac" and I wish packaging would be required to state the real ppm amount instead of being able to say "gluten free"!

    Correction: That's Dr. Alessio Fasano.

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    Guest Jefferson Adams

    Posted

    I have to agree with you. Perhaps we don't know as much as we think we know about celiac disease. I haven't read the references you cite, but I definitely react negatively to rice and rice-based "gluten free" foods. Rice pasta, breads, etc. all result in intestinal discomfort, bloating, and diarrhea, for me. I am a diagnosed celiac, so I know the symptoms. I will eat it from time to time, because it's not "supposed" to affect me; but it always does. Now it's out of my diet.

    There are several possibilities here. First, you may suffer from a secondary sensitivity. Many people with celiac disease find they are sensitive to other grains, like corn, oats. I've heard some claim they are sensitive to Quinoa, though current research show quinoa to be safe. Most likely these sensitivities are due to gluten contamination. In those cases where people do have sensitivities to other grains, isolating and avoiding the grain in question is usually enough to avoid symptoms. As for rice, plain white or brown rice has not been show to trigger adverse reactions in people with celiac disease. I have heard people claim this, even here in this thread, but double-blind controlled studies don't back them up, and in fact, show the opposite, to wit: rice is safe for people with celiac disease.

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    Excellent article and excellent explanations by Jefferson Adams. Just goes to show you how misinformed people are. I was surprised by people's comments on this article. Misinformed.

    Those of us who live with celiac disease day in and day are not misinformed. Our bodies, I assure you, "inform" us constantly. Reducing this disease to a simple "wheat, rye, barley" equation is nothing more than medical hubris. We are years, possibly decades, away from fully understanding this disease fully. Research, in and of itself, is proof of nothing. It consists merely of one small step following another small step toward understanding. We have not yet reached that place of understanding. There is no such thing, in 2014, as an "expert" on celiac disease.

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    One more myth - the article reference "gluten intolerance"; however, this is not a scientifically supported condition. Many people are foolishly self-diagnosing themselves as "gluten intolerant" or "allergic to wheat" with no evidence, and perhaps to the detriment of their own health.

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    One of the confusions with rice is between plain unseasoned, unfortified rice vs. packaged rice that has been fortified or contains seasonings. The latter might have gluten that has been added or its various "fortifications", flavorings, or seasonings might have been cross-contaminated by gluten somewhere down the line.

    I am not confused about white rice. I bought a store brand plain long grain white rice. Within an hour I was not having a good time. I did not think it was the rice, so two days later when I finally attempted to eat more than a liquid diet, I made some fresh rice from this same package. Within an hour I was not having a good time. I called the number on the package to find out that there was a great chance of cross contamination. Does it matter if the gluten comes from contamination or from gluten itself when the result is the same?

    Further, I am tired of people telling me I can tolerate some gluten when I cannot. I'm glad for those of you who can, but like the woman who commented about the cookie crumbs, that is me also. My gi doc said that after 40 years of misdiagnosed celiac disease and permanent damage this is only to be expected. Also, I have studied all about the villi and fully understand why I also can't digest other foods with my permanently blunt villi. I don't care what credentials a person has, unless you have walked a mile in my shoes don't tell me what I can tolerate!

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    Excellent article and excellent explanations by Jefferson Adams. Just goes to show you how misinformed people are. I was surprised by people's comments on this article. Misinformed.

    Thank you! I try to supply information that is current and scientifically accurate. I think I'll add some reference links to this article so that people can easily cross-reference these comments.

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    Those of us who live with celiac disease day in and day are not misinformed. Our bodies, I assure you, "inform" us constantly. Reducing this disease to a simple "wheat, rye, barley" equation is nothing more than medical hubris. We are years, possibly decades, away from fully understanding this disease fully. Research, in and of itself, is proof of nothing. It consists merely of one small step following another small step toward understanding. We have not yet reached that place of understanding. There is no such thing, in 2014, as an "expert" on celiac disease.

    We may be decades away from fully understanding celiac disease. Until then, the best we can do is to use only the most current, accurate information, based on scientific, peer-reviewed science. That's where the experts come in. Believe it or not, there are people who know a whole bunch more than you or I about celiac disease.

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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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