International Celiac Disease Symposium: MYTHS BUSTED

I think what I was most excited about at ICDS 2013 was the session about celiac and gluten-free myths. This session did not disappoint! There are so many myths (and just plain old wrong information and scare tactics) that we live in a world of fear and anxiety! I feel like every day I go online and get terrified for some reason. Luckily Dr. Guandalini was here at ICDS with a panel of guest to address gluten-free myths: Melinda Dennis, John Zone, Daonald Kasarda, and Markku Maki.

ICDS 2013 Global Gluten Free Marketplace

ICDS 2013 Global Gluten Free Marketplace

I tried to add in ALL of the myths throughout the session, but I still have to go deeply into my notes. I may add more later on this…

  • Do I just a blood test to diagnose disease? NOT SO FAST THERE, SLUGGER. There are steps to a definitive diagnosis including a biopsy.
    • Celiac Disease requires an expert evaluation, don’t just have one test with someone who doesn’t know how to read it. Please please please get a doctor that knows what he is doing.
  • OMG CORN?! ON A GLUTEN-FREE DIET!?!?! Oddly enough, ICDS posted a picture of Gluten Free Society (which is a website that I believe spreads more fear than science-based information. BUT, there is NO PROOF TO THIS. Corn is safe, don’t believe the cross-reactivity myths. However, just like ANY food, you CAN have a sensitivity to corn. Corn makes you feel awful? Solution: quit eating it! Just don’t blame it on celiac disease.
  • Let’s talk about Non-Celiac Gluten Sensitivity. How many of them are out there? Well, with NCGS, everything is still unclear – we don’t have a proper definition for what NCGS is or a number of NCGS’ out there. Also, even though you may see marketing for it, there are NO biomarkers for it!There is also no genetic test for NCGS, sorry.
  • Products that have Glutenase (a gluten digesting enzyme) that are ACTUALLY effective are NOT available on the market YET (but will be soon). Stop spending a ton of money on those products that you see in the supermarket! Scientific studies revealed that all of the major brands don’t get rid of all of the gluten proteins that you may ingest (accidentally of course, because cheating is rude).
    • There’s pills that digest gluten just like Lactaid does for lactose, right? MYTH BUSTED! Nothing on the market that helps digest gluten in the way that future enzymes will. Believe me, they’re coming and I’m very hopeful about it.
  • Wheat doesn’t make you fat. An unhealthy lifestyle or other health issues make you fat. Stop believing everything you’ve read in Wheat Belly – because we’ve pretty much debunked ALL of them at this conference. Joe Schmo off the street will not benefit from a GFD for weight loss.
    • We’re not eating more wheat than we have in the past. That’s not the cause. The range of wheat protein content for the 1st and 2nd half of the century is little change. Stop the Wheat Belly shenanigans!
  • Can you drink coffee with a gluten-free diet?  But what about all the cross-reactivity with gluten I’ve been reading about on the interwebs? Luckily, 86% of the conference said no, because the answer is no. IT IS A MYTH. STOP SPREADING THIS CRAP!!!! Drink your coffee, again, there is no scientifically validated research on cross-reactivity. However, coffee is a bowel irritant to EVERYONE. My mom. your mom. THe baristas at Starbucks. If coffee gives you the runs, congratulations – you’re like everyone else. Also, stop drinking coffee if you do. It’s that simple.
  • Not everything that happens to a celiac is caused by gluten. We are SO fearful ALL the time about XYZ symptoms being linked to gluten or celiac. OMG I ate corn and had diarrhea, it had gluten! Now, I’m not saying that gluten won’t get ‘cha at the worst moment, but we still get sick like regular people, have food poisoning like regular people, etc. We’re quick to blame gluten for it all. That being said, celiac disease is a MULTI SYMPTOM disease – which is why you can get mouth sores, joint pains, etc. This is basically just saying “gluten isn’t always the culprit” and I believe you should always be a scientist and detective with your own body to dig more into why you are sick.
  • Symptoms do NOT indicate the degree of the disease. Just because you have no symptoms does not mean you’re okay. You’re not okay. Celiac is celiac. Stop eating gluten – even if you have no symptoms.
  • Dermatitis Herpetiformis people needs to be on a gluten-free diet. Just because you have a skin reaction to gluten does not mean that you’re not a celiac and have to eat like the rest of us! That just how special you are and how you manifest the disease.
  • There’s no evidence that gluten in shampoo and conditioner can cause DH or celiac disease. If your skin is damaged or broken, gluten can get through though. There is no protection in your mucous membranes, so places like your mouth and nose, you can be exposed! I, however, refuse to introduce ANY gluten into my house, and have a sensitive scalp and skin so I use all GF items. And hey, if you feel like you have reactions or sensitivities to it on your scalp, I approve of you using only GF products too.
  • You don’t have to be skinny to be a celiac. Half of the adult population in the western countries are overweight or obese. We’re seeing a similar trend for those in celiac disease.
  • Gluten/wheat does not remain in the muscle tissues of animals who eat gluten. Meat is gluten free – so stop telling me to eat grass-fed beef. :)

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Comments: 29

  1. Megan September 25, 2013 at 7:16 pm Reply

    Thanks for all this helpful info! Ironically, I made a blog post last night about a gluten free as a fad diet. Let’s keep gluten free eating for Celiacs!

  2. Ellen December 1, 2013 at 3:04 pm Reply

    I am a celiac and I do have cross-reactivity with corn. Corn causes my celiac disease to flare, and I have what I call gluten attacks. And the big problem with that seems to be that corn, which is in so many medications, both OTC and prescription, has been interfering enough in my absorption that I have many chronic vitamin and mineral deficiencies, which have just wrecked me. Life is hardly worth living anymore, I feel so bad. And all this hype saying there is NO SUCH THING even makes some docs disbelieve that there may be some of us who are having trouble. And then we can’t get our meds compounded, as we need them, because the insurance companies won’t pay for it.

    I recently stopped taking my blood pressure medicine when I ran out — mainly because I was so sick it was just too much trouble to get renewed and filled and all that — and I got better! Better than I had been in a very long time! Looked it up, and lo and behold, it had both corn starch and pre-gelatinized corn starch. Could that be why I feel better without it? Maybe. But can I prove that and get the corn-free meds I need? I think not.

    So here I am, all a-tremble and a shakin’ and cramping up all over and weak, with no will to stand up and walk across the room… Please do not say I am depressed. I have been depressed and this is not that. This is my body not working.

    • Erica Dermer December 2, 2013 at 2:18 pm Reply

      I don’t think I ever said that you can’t have a corn sensitivity. HOWEVER, corn has not been scientifically proven to have a cross-reaction to gluten. Plenty of people I know have a corn sensitivity. YOu can have a sensitivity to anything (or an allergy for that matter).

  3. Kala January 31, 2014 at 5:25 pm Reply

    Hi, Are you sure cross-reactivity is a myth?
    I had very complex food sensitivity test (in Poland, as I am Polish) and I am sensitive to 46 foods, including gluten, & diary. It showed no reaction to patatoes, paprica or other night shades for example, but I just feel more and more awful after eating them (I am very carefull, no gluten, no diary no other foods that I am sensitive to). After eating patatoes I feel as if I ate gluten…. Don’t know what to think about all this.

    • Erica Dermer February 2, 2014 at 12:53 pm Reply

      It was from multiple scientists and doctors in the GI and celiac field, so yes, it is a myth. BUt you can be sensitive to ANYTHING. Just because you react to something doesn’t mean that your body thinks that it is gluten.

      • Tafa April 1, 2016 at 7:08 pm Reply

        “Multiple scientists”. Convincing.

  4. Peter February 11, 2014 at 3:26 pm Reply

    Hmm, I think I see your point, but I would say the way this is presented is causing even more confusion. For example, I (we) have celiac, which is an autoimmune disease, and have an autoimmune reaction to gluten when ingested. To the vast majority of people I try to explain this to, their eyes glaze over. This includes my mom, who was at one point in her life, a nurse! When I over-simplify this and say, “It’s an allergy to gluten”, people finally understand I can’t eat it. When I found out I had celiac, I went gluten-free, and improved to a point, but the symptoms, and flare-ups persisted. I had a cross-reactivity test, and found out that I was reacting to most grains(especially corn), eggs, soy, and a bunch of other foods. I actually read the details of this test, and it does not claim that my body thinks these are gluten, but it is testing for antibodies formed in response to the particular food. So yes, while technically not a response to gluten, my symptoms did not improve without avoiding these foods. I agree that definitions are important, but presenting cross-reactivity as myth seems to have created more unnecessary confusion. Interestingly, when I had the cross-reactive test done, I also had another blood test done for celiac related antibodies, and tested positive(at the low end). This was almost a year after going gluten-free. The source of my gluten exposure- my shampoo and liquid hand soap! Again, arguing about the exact mechanism and definition as myth seems to create unnecessary confusion. There are better ways to clarify this, and the endpoint is to reduce exposure to gluten.

    • Audrey April 10, 2014 at 7:26 am Reply

      I wholeheartedly agree about unnecessary confusion! There is, in fact, at least one study on cross-reaction that says, “The lack of response of some CD patients may also be due to antibody cross-reactivity with non-gliadin foods. These should then be treated as gluten-like peptides and should also be excluded from the diet when the GFD seems to fail.” “…this may explain the high frequency of dairy sensitivities in celiac patients—oats, brewer/baker’s yeast, instant coffee (but not fresh coffee), milk chocolate (attributable to the dairy proteins in chocolate), sorghum, millet, corn, rice and potato.” Note link to study by A. Vojdani and I. Tarash in references cited in this article: http://www.thepaleomom.com/2013/03/gluten-cross-reactivity-update-how-your-body-can-still-think-youre-eating-gluten-even-after-giving-it-up.html

    • TafaTafa April 1, 2016 at 7:13 pm Reply

      Well said. Call it cross reactivity, or not, the end result is I react to a long list of foods. No one really knows why, so let’s keep our minds open to the research.

  5. Philip Buckley March 21, 2014 at 3:08 am Reply

    Thanks for this article, have been avoiding quite a few foods due to a gluten type reaction. However it seems more likely that my gut needs more time to heal properly before attempting some of these foods. Given my age, mid 50’s, this is obviously going to take longer than if I had been diagnosed with C D earlier.

  6. Dr. Smarty Pantys May 6, 2014 at 8:19 am Reply

    Hello good people,

    This lady is clearly mis-informed and spouting unintentionally. Ground your energy over there, please.

    Check out Cyrex Labs – Array 4 testing for cross reactivity! Also look up functional medicine.

    Also don’t believe everything just because it’s science or black on white. Listen to your body and how it feels, it knows best!

    Signed,
    Mr. Smarty Pants Anon

    • Erica Dermer May 6, 2014 at 10:20 am Reply

      Don’t believe science? Sorry, I do. This was from the TOP DOCTORS OF CELIAC RESEARCH. So, if you’d like to believe something else, you have every right to – but don’t tell people that this “lady” – which is me – an advocate for celiac disease – is spouting misinformation. Thanks.

  7. Broken Vila June 20, 2014 at 9:28 am Reply

    Top doctors of celiac research? Well, I will listen to my body and it’s reactions before
    I will listen to Doctors produced by Big Pharma.

    If it does not feel right then don’t eat it. Cross reactivity, food sensitivity, what ever you
    care to call it. The damage done is damage done, all the same to me.

    • Erica Dermer June 20, 2014 at 10:32 am Reply

      Whoa whoa whoa – the second you accuse these doctors of being in the pockets of big pharma, we’ve got a bone to pick. The only “cure” for a gluten-free diet at this point is to actually just eat a gluten-free diet. HOW IS THAT INFLUENCED BY BIG PHARMA?????

      Also, I’m not dispelling food sensitivity as a myth. If you read the article, you would see that I only talk about cross-reactivity with gluten. They haven’t found the science behind how you can call something like coffee cross-reactive with gluten. Now, can you have a food sensitivity to ANY OF THE ITEMS THAT SOME “DOCTORS” call cross-reactive? YES. That doesn’t mean it’s cross-reactive with gluten.

      • Timmy Tough July 10, 2014 at 7:13 am Reply

        I can jump on board with the hypothesis that there is no “cross-reactivity”, but this is purely a semantic argument on the definition of “cross-reactivity” because you pretty clearly state that individuals can react to these other foods it is just the “cross” prefix that you are taking to task. As for your question above “HOW IS THAT INFLUENCED BY BIG PHARMA?????” these companies make a large profits treating symptoms, if they can convince folks that there is no such thing as “cross-reactivity” they can create confusion and cast doubt on the treatment prescribed by functional medicine practitioners and thus allowing for symptoms to persist and require treatment with their drugs.

      • Joe L. February 15, 2015 at 11:07 am Reply

        Erica Dermer…keep up the great work. Celiac Disease symptoms pale in comparison to the obvious desires of the public to argue and fight like toddlers. Mental health is certainly an issue outside of diet that some of these posts reflect.

  8. alex farnham July 29, 2014 at 8:39 am Reply

    I just wanted to say that I am sorry that everyone who has commented.is misunderstanding one part or another which is making you look bad.
    Also, theres no treatment for celiac symptoms except going gluten free. Ive never found a single product on the market that ever helped my symptoms in the short term or long term and I had tried everything until I found out it was gluten.
    Why would these doctors be connected to big pharma in any way? Big pharma has nothing to do with celiac at this time.
    To explain the common dairy sensitivities in those with celiac is simpler than cross reactivity.
    The villi, those hairs in your intestines, produce enzymes which digest lactose. Celiac disease causes damage to those hairs and as a result many people temporarily cant digest dairy untilthey heal. I would suggest anyone who has a “cross reaction” to stop eating those foods for 6 months or so, until your intestines are healed. Then reintroduce them. I would be willing to be you can eat a lot more foods now. If you still cant eat something then you probably have another sensitivity. However, unless your body creates an autoimmune reaction in response(and I mean producing the SAME antibodies it does in response to gluten), then it isnt true cross reactivity.

  9. alex farnham July 29, 2014 at 9:06 am Reply

    To clarify, my main issue with the comments is the big pharma connection. Im on the fence about cross reactivity.
    In my experience there was nothing to help my symptoms other than going gluten free. Im sure big pharma would love to get in on celiac but as of now they havent.

  10. Broken Vila September 14, 2014 at 5:27 pm Reply

    “HOW IS THAT INFLUENCED BY BIG PHARMA?????” these companies make a large profits treating symptoms, if they can convince folks that there is no such thing as “cross-reactivity” they can create confusion and cast doubt on the treatment prescribed by functional medicine practitioners and thus allowing for symptoms to persist and require treatment with their drugs.

    Bingo!!!! Well said Timmy Tough!

  11. Amy December 15, 2014 at 9:23 am Reply

    I am celiac and coffee gives me “glutinzed” reaction – NOT GI symptoms! I get irritability, brain fog and nausea. NOT diarrhea. Yes, I even tried grinding my own coffee from beans. Still nauesa, brain fog, irritability. My classic glutenized symptoms. I just gave it up now. So, yes, some celiacs do have reaction to coffee that may develop over time (I was diagnosed in Dec. 2010 and started reacting to coffee just recently, Dec. 2014).
    The immune system is a weird thing and doctors don’t know everything regardless what kind of “top experts” they are.
    While I appreciate your article and sharing what you learned, I would warn against blanket statements as science may change, everyone is different, and (unfortunately) science does not have all the answers (yet).
    And no, I don’t have a separate coffee-sensitivity.. my reaction is the same to coffee as to gluten.

  12. Ella December 30, 2014 at 6:32 am Reply

    This is such a sloppy, dismissive piece and it does a disservice to people suffering from gluten related disorders. Whatever the mechanism, cross reactive type foods still have a negative affect and this explains why many so celiacs don’t improve after going gluten free. The immobilized immune system response does not categorize. There is also the issue of infection and inflammation preventing the celiac patient from recovering which is hardly mentioned too.

    As for coffee… Some instant coffee has been found to have been contaminated with gluten in the manufacturing process. This article seems to be unaware of that. Fresh ground coffee can be fine for some people. This article is the equivalent of a bull in a china shop.

    • Erica Dermer December 30, 2014 at 10:51 am Reply

      Well, thanks for your opinion. However, I am reporting on the science of top celiac scientists.

      There are MANY reasons why SOME celiacs don’t improve – some being a sensitivity to OTHER foods – but as far as a list of cross-reactive foods, that was disproven at this conference.

      And yes, instant coffee is not just coffee….same with flavored coffee…you still have the check the ingredients for everything like a good celiac will do.

  13. Karen June 10, 2015 at 10:36 am Reply

    I came across this article because I am suddenly having problems with corn products. Believe me, a quick internet search on the topic brings up the craziest half-baked stuff, so I was glad to run across this summary of information from actual experts.

    Because I was diagnosed with celiac a few years back, I thought there must be some connection to this new development. Maybe cross-reactivity isn’t the link. But although I’m glad corn isn’t eroding the lining of my intestines the way gluten would, I never had any food sensitivities at all until I developed celiac. Actually, my digestion in general is more sensitive despite a strict gluten free diet. I think celiac has somehow set me up for that additional sensitivity. In other words, I would be surprised if there wasn’t some sort of connection, the details of which science will have to tease out over time. Maybe the research into intestinal flora differences will yield some answers.

    As for big pharma, I can understand the distrust. Pharmaceutical companies often provide funding for research studies. I’m not sure what the rules for disclosure of such funding are. And we’ve probably all received the free samples from our doctors of the newest drug for x condition, provided compliments of whatever pharmacy sales rep visited – hard not to wonder if that influences a doctor’s prescriptions. To say that doctors and researchers are “bought” by big pharma is a ridiculously broad statement (research is peer reviewed before being published, and a good journal will be rigorous about that). The person making an accusation that a pharmaceutical company is influencing a particular piece of research would need to find out if a pharmaceutical company did indeed fund it. And even then it doesn’t mean the research is flawed. I’ll take science over anecdotal evidence any day. Also, just because a person isn’t connected with “big pharma” doesn’t mean they don’t have an agenda or product to sell – how much is the author of Wheat Belly making, I wonder?

    Some of these myths I had never even heard of: cross-reactivity with coffee, avoiding grain-fed beef. My follow up lab work would be an utter shambles if that were the case.

  14. Mary December 17, 2015 at 7:28 am Reply

    If you have Hashimoto’s disease, pretend you have “celiacs” because your autoimmune disease thinks gluten IS your thyroid. Also corn is an irritant for EVERY ONE regardless if they realize it or not. Corn & Wheat isn’t the same as it was a century ago. It’s Franken food as far as I’m concerned. That stated, everyone should listen to thier own bodies reactions and go from there. Read EVERYTHING with an open mind but realize just as not everyone suffers from Celiacs, not everyone suffers from an autoimmune disease like Hashimotos. Also 10% of those who DO have Hashimotos disease, have great difficulty eating coen, wheat, nightshades, any kind of grain…etc…etc. A small percentage of those can not even tolerate coconut at all…I’m one of the small percent. I am on a whole food diet of Fruits and veggies and on occasion, grass fed beef only and since giving up all tgat crap…wheat and corn…I feel like a rockstar. So, if you can eat wheat and corn and not think it has an effect…by all means eat and be merry…

  15. Kurt Ashton January 23, 2016 at 4:31 pm Reply

    I am glad to hear that I can still drink coffee as a celiac. Yes! There is alot of people out there scaring people about this cross reactivity. Thank you for setting it straight.

  16. Emily Grimley May 13, 2016 at 12:35 pm Reply

    Hi, just stumbled across this article. I am allergic to wheat and absolutely cannot drink coffee. When I consume wheat or drink coffee, I break out in hives. Exact same reaction for both.

    • Erica Dermer May 13, 2016 at 6:52 pm Reply

      Anecdotal evidence does not counter the scientific evidence. It may be a huge sensitivity to you, but it does not mean that gluten is in coffee.

    • Paula June 1, 2016 at 9:59 am Reply

      Me too, Emily.

      I wish, WISH it weren’t true, I’m Celiac and have found it harder to give up coffee than to give up gluten.

      ‘ve tested this several times across the years since being diagnosed Celiac, introducing coffee again into a strictly gluten free diet when I’m fully asymptomatic. Each and every time I’ve had the same reaction: the Dermatitis Herpetiformis rash which is a symptom of Celiac for me.

      I think it does people a disservice to dismiss gluten cross-reactivity in this way. I know there’s no gluten in coffee, I’m not arguing otherwise. But I am very clear on the symptomatic response I see: my body sees coffee molecules as gluten. It blows.

  17. Norm G May 22, 2016 at 5:02 pm Reply

    Thank you posting this! As a Master Gardener, I can’t believe how much myth and fear slinging I see. I am not Celiac. However, after weeks of more tests than I could imagine (including gall bladder, liver, kidney) I was overjoyed to learn I did not have cancer. And, a gastroenterologist, an internal specialist (organs and such) and a specialist in allergies put their heads together and concluded I was gluten intolerant. That I had developed an intolerance later in life and that was the source of several years of troubles. I protested, called it hog-wash, a fad diet, and gross incompetence (claiming they couldn’t find a real cause so adopted some “ghost” theory). The gastro specialist said that you absolutely CAN test negative for Celiac but still have an intolerance/allergy/whatever to gluten. I tried their gluten free plan, and in less than a week I was almost symptom free. If I cheat — oh, boy, do I pay for it! So, to those nay-sayers who admonish it is just a fad and leave the gluten stuff to celiacs, well, I sang that song, too, until it happened to me. It is real. Believe it. And thanks, Erica, for sticking to your guns and discounting anecdotal evidence.

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