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Seven Common Myths About Celiac Disease and Gluten-free Eating

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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43 Responses:

 
Dick L.
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said this on
27 May 2014 12:48:36 AM PST
"The tiniest crumbs of bread far exceed 20ppm..."

Well, of course. 20ppm is a rate, not an amount. If a particular bread tests at 2000ppm, then the whole loaf is 2000ppm and the tiniest crumb is also 2000ppm. But what's important for us as celiacs is the total amount of gluten consumed, not how strong in gluten some part of what we consume may be. If I eat a Chinese dish that has wheat-based soy sauce in it, it makes a difference whether I eat lots of the sauce or not. The sauce my be 150ppm gluten, and if I only have a teaspoon of it, it still 150ppm, but I get less gluten than if I ate a couple of tablespoons of the sauce.

The whole "20ppm" standard encourages people to think the wrong way about gluten consumption. Something expressed in milligrams per serving or micrograms per serving would be much more useful.

 
Jefferson Adams
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said this on
29 May 2014 1:12:52 PM PST
20ppm is not a rate. 20ppm gluten is a ratio, a ratio that is based on an amount, and a ratio that is uniform and scalable. It can be represented by a fraction 20/1000000, which equals .00002. Let's imagine eating a dinner, albeit a big dinner, that weighs a total of 1 kilogram (1000 g). 1000g times .00002 equals .02 gram, or two-one-hundreths of a gram. A microscopic amount. Regarding your soy sauce example, in both cases, you have still exceeded the total amount needed to cause an adverse gluten reaction. Said amount would be based on a ratio of your total dietary intake to the amount of gluten included in that total. If the gluten exceeds more than .00002 of that total, you are risking adverse reactions. I hope this helps.

 
Team
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said this on
27 May 2014 1:19:17 AM PST
Complete rubbish. My specialist advised crumb contamination is not a problem. Apart from being a specialist he's also celiac, as is his daughter.

 
Jefferson Adams
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said this on
29 May 2014 12:42:59 PM PST
Please provide the name of your specialist. I'd love to hear his faulty rationale for such a misinformed view. Let's imagine you're making gluten-free toast that weighs 1 ounce (about 28 g) per slice. In order to eat under 20ppm gluten, your contaminated crumb would need to weigh something like .00056 grams. Even if we adjust for the actual weight of the gluten relative to the crumb itself, that would still make the crumb, literally, microscopic. More likely, a crumb would weigh something like a few hundredths of a gram. This would be more than enough to trigger a reaction in most people with celiac disease. Your specialist is off by many orders of magnitude.

 
Jacqie
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said this on
02 Jun 2014 2:17:26 PM PST
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.

 
Jefferson Adams
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said this on
04 Jun 2014 3:37:31 PM PST
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.

 
norm
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said this on
03 Jun 2014 9:47:08 PM PST
My specialist says same thing. I react strongly to a table spoon of bread crumbs, I did a study for UCSD. I used the same tester as my family. I do not have a reaction and I get tested frequently to ensure my diet is still gluten free.

 
CS Prid
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said this on
19 Aug 2014 4:35:30 AM PST
I don't know that I would go on the anecdotal advise of even a "specialist" when it is contrary to the scientific data of the field in which he specializes.
Minute amounts of gluten make one with celiac very, very sick.

 
Luna
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said this on
05 Jan 2015 2:50:52 PM PST
Your specialist needs to go back to school. Badly. Please share this moron's name so we can all avoid him.

 
Nicholas Cole
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said this on
27 May 2014 12:14:36 PM PST
I disagree with Myth #1 regarding rice is okay for celiacs. Please see Cyrex Labs Array #4 for IgA and IgG testing of Gluten Cross Reactive Foods. Rice, including other foods are gluten cross reactive and can cause a immune reaction similar to gluten.

 
Jefferson Adams
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said this on
29 May 2014 12:30:12 PM PST
This is incorrect. People with celiac disease do not react to rice gluten the same way they do to secalin from rye, hordein from barley or gluten from wheat. Plain rice of all types is safe for people with celiac disease to consume. Ask any celiac expert.

 
Ann

said this on
03 Jun 2014 7:30:37 AM PST
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.

 
admin
( Author)
said this on
04 Jun 2014 7:00:21 AM PST
Your reaction is a secondary intolerance, and not celiac disease or gluten sensitivity.

 
Jefferson Adams
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said this on
04 Jun 2014 3:34:37 PM PST
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.

 
Rrr
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said this on
07 Aug 2015 1:36:44 PM PST
Rice, wild rice and wheat are all grasses. All true grains are. Some contain glutens to which celiacs are reactive, some do not. Some celiacs are sensitive to other things in other grains for other reasons. Some non celiacs are sensitive to things in grains for other reasons.

 
Jacqie
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said this on
02 Jun 2014 2:05:25 PM PST
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.

 
Jefferson Adams
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said this on
04 Jun 2014 4:36:05 PM PST
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.

 
Susie
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said this on
02 Jun 2014 5:22:22 AM PST
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"!

 
Jefferson Adams
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said this on
04 Jun 2014 3:25:08 PM PST
FYI: 20ppm is FAR less that ⅛th of a teaspoon. Also, you are referring to possible cross-contamination, not gluten in rice per se. Lastly, by "celiac experts," I am referring to major celiac disease researchers like Dr. Peter Green, Andrew Fassano, and doctors at places like the Mayo Clinic. I hope that helps.

 
Jefferson Adams
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said this on
04 Jun 2014 4:16:08 PM PST
Correction: That's Dr. Alessio Fasano.

 
Maris
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said this on
02 Jun 2014 7:10:11 AM PST
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.

 
Jefferson Adams
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said this on
04 Jun 2014 3:31:30 PM PST
Excellent point. Plain white, brown, or wild rice alone is safe for people with celiac disease.

 
Susie
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said this on
10 Jun 2014 4:36:12 AM PST
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 CD 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!

 
jill
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said this on
02 Jun 2014 7:28:47 AM PST
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?

 
Jefferson Adams
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said this on
04 Jun 2014 3:29:43 PM PST
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.

 
Kerri
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said this on
02 Jun 2014 11:13:52 AM PST
Thank you for this article! My husband and three children have celiac disease. My understanding is that even very small amounts of gluten (microscopic) can begin an immune response where the immune system begins attacking not only the gluten, but also their body (usually the gut, but two daughters develop tremors with gluten exposure, which means it's attacking their nervous system, also). The gluten acts like an "on" switch that makes the body attack itself. Is that correct? I find this helps others get a better perspective when explaining how harmful even crumbs are.

 
MsGF
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said this on
02 Jun 2014 2:00:19 PM PST
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.

 
Jacqie
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said this on
04 Jun 2014 7:16:07 PM PST
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.

 
Jefferson
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said this on
10 Jun 2014 11:57:46 AM PST
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.

 
Jefferson
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said this on
10 Jun 2014 11:53:35 AM PST
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.

 
Rebecca Taylor
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said this on
02 Jun 2014 6:26:08 PM PST
Mine affected not only my intestine but it helped the appendix to get inflamed. it also masked the symptoms of my gallbladder problems. having gluten intolerance since a child I was unaware of what else was going wrong. I have since learned how to make garbonzo bean donuts and corn masa cake.

 
Linda
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said this on
02 Jun 2014 8:07:44 PM PST
I will weigh in here, if I may. I have celiac disease. I cannot eat any gluten in even the smallest amounts and cross contamination is a serious event for me. An example of the "crumbs" issue, my husband brought home some cookies and ate them at his place at the table. However, unbeknownst to me, some crumbs from those cookies ended up at my place at the table. I did not know the crumbs were there and I placed some vitamins on the table which I took later. I had a gluten reaction (GI) about 20 min later.

 
Lynn_M
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said this on
02 Jun 2014 10:05:17 PM PST
The answer from a celiac expert will be the accepted wisdom of the time. Most likely someone's opinion. Dr. Peter Osborne is one celiac expert who would disagree with you, because he says any grain storage protein can be problematic, although he lists rice as the least problematic. I recall reading research articles at his website that support his conclusion. I think a research study rather than a celiac expert's opinion is what it takes to answer the question of whether the forms of gluten in other grains can cause immune reactions similar to gluten.

 
Jefferson Adams
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said this on
04 Jun 2014 1:39:59 PM PST
By all means researchers should study all relevant triggers for celiac disease. The overwhelming evidence and scientific opinion of the moment is that rice is safe for people with celiac disease. There is simply no solid evidence supporting the idea that rice is "problematic" for people with celiac disease. Dr. Osborne's opinion is not based on convincing science. There is no documented evidence of rice triggering gluten reactions in people with celiac disease.

 
Ann
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said this on
03 Jun 2014 7:32:11 AM PST
This gives incorrect information regarding rice gluten.

 
Jefferson Adams
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said this on
04 Jun 2014 1:44:38 PM PST
Specifically, what is incorrect about it? There is no hard science that shows that rice triggers gluten reactions in people with celiac disease. The vast majority of celiac disease experts and researchers, American and European, including Dr. Peter Green, Dr. Andrew Fassano, and many others, consider rice to be perfectly safe for people with celiac disease. That is simply the overwhelming medical consensus, supported by research.

 
Jefferson Adams
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said this on
04 Jun 2014 1:49:39 PM PST
For anyone else who thinks rice is not safe for people with celiac disease, here is a link to the Mayo Clinic's gluten-free food list for people with celiac disease, please go to this website, or to the Mayo Clinic dot Org. Click diseases-conditions/celiac-disease/expert-answers/celiac-disease/faq-20058118

 
Marcie
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said this on
05 Jun 2014 8:24:41 PM PST
The amount of gluten that would fit on the head of a pin is enough to cause damage to the villi.

 
Jefferson
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said this on
10 Jun 2014 11:59:22 AM PST
That is correct!

 
Mark
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said this on
09 Jun 2014 2:50:48 PM PST
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.

 
Jefferson
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said this on
10 Jun 2014 12:02:01 PM PST
Non-celiac gluten sensitivity is a currently, albeit recently, recognized medical condition. Research has shown a whole class of people who have adverse reactions to gluten, but no gut damage, etc.

 
Shirleen
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said this on
06 Jul 2015 1:29:24 PM PST
My Nephew died from celiac disease, it is on his death certificate!

 
celiacsue
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said this on
11 Aug 2015 5:24:07 AM PST
I wish people would pay attention to the difference between celiac and NCGS. Only celiac is an autoimmune disease. That does NOT mean those with non- celiac gluten sensitivity do not have reactions...it does mean they do not have autoimmune reactions. I agree that there is scientific studies supporting baseline unsafe gluten for us with celiac but as with everything in life everyone has different responses. This article is talking about celiac.




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