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.
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. 🙂
Tagged: celiac, celiac disease, Celiac Disease Myths, Celiac Myths, Chicago, gluten, gluten free, ICDS, ICDS 2013, International Celiac Disease Symposium, Myths
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!
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.
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).
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.
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.
“Multiple scientists”. Convincing.
Tafa, more convincing than the evidence seen for cross-reactivty, most of which links back to ONE particular lab who makes money selling a test that supposedly reveals what you are cross-reactive to.
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.
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
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.
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.
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!
Mr. Smarty Pants Anon
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.
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.
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.
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.
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.
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.
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.
“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!
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.
Broken Vila; did you have your villi biopsied? Without a biopsy nothing can be determined. What you described sounds like the medical description of acid stomach. I have friends that are not celiac that have those same reactions. Maybe they have to be on a gluten free diet? Does everyone who is sensitive to dairy have celiac issues? I had a friend who ate bad meat bloat up, had upset stomach and diarrhea with vomiting, is that celiac disease too?
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.
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.
May I have the name of this Celiac conference where the “top celiac scientists” attended?
International Celiac Disease Symposium. It happens every two years in an international city.
OMG. The headline of your article / report is INTERNATIONAL CELIAC DISEASE SYMPOSIUM, and you repeat this information several times. And they still ask where you got your information from. They also keep asking who these doctors are? They can easily reach this information from ICDS 2013 leaflet / website. What do they want from you? You’re almost guilty reporting what you have learned.
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.
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…
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.
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.
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.
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.
Hi Emily, I wanted to ask you about your response. I am Celiac and have been on a strict gf diet for years. About 6 months ago I started getting DH on my right hip area. Despite a strict GF diet and having been tested by extensive blood work, I am not getting any gluten by contamination. I am at a loss for what is causing my DH to flare. I have cut out dairy for the past 2 weeks and still getting a reaction. I am still doing coffee so your posting was interesting to me.
Did you have your thyroid levels checked?
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.
I think I could shed some light and clear up some of the confusion. Read this definition:
the reaction of an antibody with an antigen other than the one that gave rise to it.
Now, the author here is saying that what YOU feel may be a cross-reaction to gluten may just be a food sensitivity to another food. You will have to have an upper endoscopy after eating the irritating food to see if it is causing the exact same damage to the villi in your small intestine before you can say that it is triggering a Celiac disease flare-up.
All the arguing in the world cannot substitute for scientific research. Perhaps people with Celiac disease have a higher rate of other food sensitivities in general. Much more research must be done to see if this is true and why.
Big pharma is not making much money off of that belief because, with any food sensitivity, the only treatment should be eliminating that food from your diet. Just because you’re sensitive to a food, does not mean it is related to gluten.
I am allergic to cats. I am also allergic to oak trees. My allergy to oak trees was not a cross-reaction to my cat allergy. (although cross-reactive allergies do exist.) I do have many other allergies. My body does not recognize oak trees as cats. I’m just allergic to both.
Thank you for all of this information. I do not have Celiac disease, but I do have Hashimoto’s and was advised to eliminate gluten from my diet. I am still learning about what I can and cannot eat, but I am soooooo relived that I can still have coffee.
Well, we can argue, but the real question is: Is there anyone who is gluten intolerant but not coffee (milk, corn, yeast…) intolerant? If there are people who are allowed to drink coffee, milk, etc., and are gluten intolerant, then there is a proof that cross-reactivity is a myth… I would really like to hear from someone! Unfortunately, I’m gluten intolerant, but milk, chocolate and coffee are also forbidden… But, potatoes and rice are ideal food for me. So…
Yes, I can easily eat coffee, corn, yeast, etc. Remember, you can be sensitive and intolerant to anything!
Thank you very much! I really like coffee, and hearing about cross-reaction was very disappointing. I have to be gluten free at least for several months, in order to make check thyroid antibodies but it would be too much to avoid coffee as well… I hope it wouldn’t influence the results…
I suspect the truth about coffee is a bit more nuanced than yes/no ( and 16% of the experts per your statement said it was not safe.)
Of the 86% who say coffee is safe, do they mean
coffee ground on equipment that has just ground wheat is safe?
Coffee with added flavors containing gluten is safe?
Coffee harvested next to wheat fields and covered in wheat dust is safe?
Coffee adulterated with cereal grains to make it stretch further ( as has been discovered as a food fraud in some manufacturing practices) is safe?
or do they mean pure coffee that has not been cross contaminated or adulterated in any way is safe?
There is a huge difference between all coffee is always safe, and coffee that has not been exposed to gluten is safe.
(and that is not even talking about creamers, and whether or not they are gluten free)
That is why some people prefer buying whole beans and grinding the beans themselves, as this reduces at least some of the chance for cross contamination. If cross contamination can be a serious problem for other foods, there is no logical reason why coffee is safer than anything else with regard to cross contamination risks. Just a different point of view from someone who has known celiacs who have had huge reactions to certain coffees.
There is a lot of misinformation in this article. Meat can contain gluten. If a feedlot animal has a leaky gut from eating an unnatural diet, gluten can certainly cross into the blood stream and be sequestered in fat tissue. Also the sanitizer used to wash equipment can contain gluten. Bt pesticides used on organic produce contain gluten to help it adhere to the leaf. Scientists tell us that breast milk can contain gluten but animal milk doesn’t? I disagree.
Oh dear god no. This is not science.
I am 100% gluten free, I only eat foods I prepare myself at home using certified gluten free products. I am still have a lot of symptoms. The ONLY culprit I can figure out is coffee…. NOT saying that coffee has gluten, but my body is mistaking coffee for a gluten-containing substance. You cannot make an “ultimate” yes or no statement about these things…. the fact is that a body with celiac disease has other major sensitivity issues to other substances.
Or that you have a sensitivity to caffeine or coffee outside from celiac disease. It can be different mechanisms…