Gluten and Cross-Reactive Foods

I like like to get my advice from Trained Celiac experts.  

https://www.cureceliacdisease.org/faq/whats-with-all-the-talk-about-certain-types-of-food-causing-cross-reactivity/

“There is not yet reliable data about cross-reactivity. As for the alleged possibility that many gluten-free foods or drinks (such as coffee, milk, orange juice, etc.) would trigger symptoms in celiac individuals due to hidden antigens mimicking gluten or cross-reacting with anti-gluten antibodies, it must be clearly stated that this is all false information, devoid of any scientific basis, and must be rejected as untrue. “

I’ve learned that the term “cross-reactive” is simply another way of saying “additional sensitivities.” I myself could not eat tomatoes, chicken eggs, or corn for at least two years after I went on a gluten-free diet. It took that long for my gut to recover, and to reach the point where I did not react to those foods. Thus cross-reactivity seems to be very real for many people, but no research that I know of has been done on it. Until research is actually done on this, I don’t see how anyone can claim that it does not exist.

This author is saying that  our bodies respond to these things like they are gluten.  I have linked to the Univ of Chicago.  The author claims the proteins are similar, in completely un-related foods , to the protein in wheat, rye or barley.  I have not seen any real evidence of this.  

Being unable to digest or allergic or some other sort of thing is different.  

I could go off on this and post links to actual studies and discredited studies, but I don’t have the energy for that.  That is why I just went to the experts that have looked at that.  

The simplest thing is to save yourself thousands of dollars - if it bothers you, don’t eat it for a while.  You can find lots of info on elimination diets -  how to pair down to basics and slowly add foods back.  

Is this a paid advertisement for IgG food allergy/intolerance testing?  which is not very accurate per the American Academy of Allergy Asthma and Immunology (plus Canadian and European counterparts)?  

https://www.aaaai.org/conditions-and-treatments/library/allergy-library/IgG-food-test

Celiacs do tend to have additional food intolerances.  The most common seem to be lactose, corn and soy.   It is recommended to keep a food journal to help identify additional food intolerances.  

Personally, I have identified a few food intolerances like Xanthan Gum (commonly found in gluten free products).  I drink coffee.  In fact, I consume all the foods listed in the above article with the exception of oats.  A repeat endoscopy revealed a healed small intestine.  My celiac disease is in remission.  

So, I do not buy into the gluten cross reactivity theory at all.  I suspect that some celiacs who continue to feel ill are most likely getting gluten exposures, they are early in the healing process or they have another concurrent health issue.  

@cyclinglady all ads on this site are disclosed as ads, this isn’t an ad.

As far as I know additional food intolerances would not just go away because of a gluten-free diet, as most of mine eventually did. Something else is definitely going on here, thus the now widely used term “cross reactivity.” I suspect that leaky gut is causing certain people to react to certain additional proteins. Once the leaky gut is healed with a GFD, then the additional intolerance may go away. A true food intolerance would not be temporary. Our forum is filled with stories very similar to this, and I suspect that eventually they will discover more about why this happens to certain people, usually with the same group of foods covered in this article.

Until recently gluten sensitivity and non-celiac gluten sensitivity were also dismissed as non-scientific, however newer research is proving that both exist, are real, and have a scientific basis.

I am not discounting food intolerances, allergies, leaky gut or even cross reactivity.  However, it is my understanding that cross reactivity is related to IgE allergies.   For example, people with a latex allergy might cross react with bananas.  There are no leading celiac disease centers or celiac disease support groups/foundations that support this gluten cross reactivity theory.   Just bloggers with most trying to sell you something.  

These groups are recognized by our government who are supporting celiac disease and not ONE supports gluten cross reactivity for celiacs:

https://www.niddk.nih.gov/health-information/digestive-diseases/celiac-disease-organizations

If people are not healing while on the gluten free diet and their doctors have ruled out other illnesses, they should consider a temporary diet like the Autoimmune Paleo Diet which also happens to be gluten free.  

https://www.healthline.com/health/aip-diet

Scripps in San Diego conducted a tiny tiny study testing IBD patients (UC and Crohn’s).  They achieved about a 78% remission in just a few weeks.  Too bad no one wants to fund larger food studies.  There are many sites that discuss the AIP diet and it is free.  

Again,  I do not believe that cross reactivity is an issue for those with celiac disease.     Can celiac, NCGS or wheat allergies patients they feel bad when they consume foods like coffee or chocolate?  Sure.  Most likely it is because they have other concurrent illnesses or those foods contain other ingredients (e.g. dairy or soy in chocolate). 

Keeping a food journal can help identify food intolerances and it costs nothing, unlike IgG testing which is still controversial.  

In addition to celiac disease,  I have other diagnosed autoimmune disorders and allergies/intolerances.  Two years ago, I was exposed to gluten.  I developed chronic autoimmune hives that lasted for six months.    I was not getting well.  My GI recommended a repeat endoscopy, but I refused.  I trialed the Fasano diet which is basically non-processed gluten-free foods and I did not eat out.  But this very restrictive diet did not help.  I finally had the repeat endoscopy and it revealed a healthy, healed small intestine.  My celiac disease was in remission.  I was doing a good job avoiding gluten and I had healed from that initial hidden gluten exposure (my antibodies were very elevated after that incident).    However, gastric biopsies revealed autoimmune gastritis.  I learned that I should have listened to my GI and had the endoscopy.  But I was convinced that gluten was getting into my diet.  I was wrong.  Trialing the Fasano diet did not hurt me as it was only for a few months, but I worry that others might restrict their foods unnecessarily and without any evidence.  

 My heart goes out to those who still struggle.  What other illness is there where the treatment falls solely to the patient?   People should try to work with their doctors, dietitians and other celiacs (like those on this forum) to insure they are actually gluten free before experimenting with other treatments.  

Finally, I wish the National Institute of Health (NIH) would fund more GI disorders.  Let’s face it, GI health issues are not very glamorous.  How many medical students and scientists are interested in this field?    

Prior to this year, celiac disease has not received much, if any, funding for the government despite the fact that it is known that 1 in 125 people have celiac disease.  Just read this report.  Where is celiac disease listed?  

https://report.nih.gov/categorical_spending.aspx

The good news is that some funding has been assigned as of this year.  

16 hours ago, Scott Adams said:

@cyclinglady all ads on this site are disclosed as ads, this isn’t an ad.

 

Okay, this is not technically an ad, but the author is promoting one specific lab to do IgG testing.  She is also promoting her own business (listed website) found in her bio listed below.    That is a conflict of interest and should have been disclosed in the article, along with references to back her claims.  

5+ years ago no mainstream doctors or scientists accepted gluten sensitivity as a scientific fact, and many made very similar arguments against it—there is no science to back it up right? People in our forum, and articles in this site have discussed it as being a real condition for 20 years. Now it is generally accepted because of new science that has shown it exists, it’s real, and many people have it. As mentioned, something else is going on with these additional sensitivities after someone is diagnosed with celiac disease. Eventually the science may catch up. Celiac.com will continue to be a leader and discuss these conditions. 

39 minutes ago, cyclinglady said:

Okay, this is not technically an ad, but the author is promoting one specific lab to do IgG testing.  She is also promoting her own business (listed website) found in her bio listed below.    That is a conflict of interest and should have been disclosed in the article, along with references to back her claims.  

 

It may not be a paid advertisement, but obviously she writes these things to help promote her book and business.  But I am not sure that is really all that unusual.  I have gone to medical lectures where the doctor has something to sell but is an expert on the subject.  It usually says right at the beginning “ Dr. Karen, CEO and founder of K Imagining”.  Then she would explain how this new colonoscopy scope she invented works.  Along with pictures ..... while eating lunch....  ?

It happens all the time, she’s not affiliated with the lab mentioned and won’t get a dime if you get a test done there. Anyone who agrees with her perspective can visit her site for more info. 

One thing is definitely for sure... doctors and clinics DO NOT have all the answers.  I had celiac for 13 years before any of those wonderful doctors and clinics diagnosed it.  13 years of never ending tests.  I had celiac blood tests that came back negative during that period.  Yet here I am years later with celiac.  Changed my diet and everything that was bothering me for 13 years stopped.  So to say that because a clinic hasn't accepted a finding yet so therefore it is untrue is a very close minded attitude to alternative therapies and treatments for a problem that is still being understood.  Doctors and clinics will only accept something once it is clinically proven through years of tests, trial and error.  Doesn't mean that the alternative therapies are wrong, just that current science hasn't caught up to it yet. 

I am completely celiac free with my diet yet I can't eat chocolate or any alcohol (supposedly gluten-free alcohol).  Both get me more violently ill than if I ate a loaf of bread.  Is it because I am 'cross-reacting'?  Is it because I just have other food allergies?  Time will tell.  I am certainly not ruling it out because some clinic has not accepted it yet.  Completely within the realm of possibility given my own anecdotal evidence.

You find similar arguments made about things like medical marijuana or acupuncture.  Western medicine traditionally hasn't recognized either of them as a real treatment for anything, yet countless people can vouch to their effectiveness in treating various illnesses.  Finally the science is catching up on marijuana but there is always political red tape slowing down that progress.  So even there when western medicine is moving towards accepting something it traditionally hasn't, it can be incredibly slow because of factors beyond just the science of it.  

I think with this particular celiac illness, modern science is still catching up.  They are traditionally slow to label anything as definitive because there is a lot of liability associated once they do that.  Doesn't mean they have all the answers or are correct by disqualifying a treatment they simply don't know enough about.

As a side note, funny that coffee is in this list.  I never drink coffee but before I got diagnosed, whenever I was bloated/sick and couldn't get any relief I would drink a cup of coffee because that would always get things moving so to speak lol.  I always thought it was the caffeine or something stimulating my digestive system.  Who knew?   

@DevilGluten it may, unfortunately, take another 15-20 years before the medical and scientific communities catch up to what many who visit this site already know. After all, the average time to a celiac disease diagnosis is still over 7 years, even though simple blood screening for it is now widely available.

Celiac.com has published articles on our site that discussed such wild ideas at (non celiac) "gluten sensitivity" and "leaky gut" way back in the 90's, when both were considered by many in the medical community to be bogus. Based on the mounting anecdotal evidence people shared with us on a daily basis, it became clear back then that both conditions are real, and that it would take time for the science to be done to back this up. In the Summer of 2002 Celiac.com published the first issue of Journal of Gluten Sensitivity (https://www.celiac.com/articles.html/journal-of-gluten-sensitivity/), and we were routinely criticized for going down the "non-scientific path" and pursuing ideas that had "no real scientific basis." Recent studies now support the existence of both conditions.

I've never heard of studies that have been done to explain why so many people seem to "cross react" to other gluten-free foods after diagnosis, or explain why these temporary "food intolerance" issues then go away in many (but not all) cases. Like gluten sensitivity, too many people report issues of "cross reactivity" for it not to exist. 

So yes, if you ask certain "experts" now what they think of "cross reactivity" many may call it bogus, just as many called (non-celiac) gluten sensitivity and leaky gut bogus 15-20 years ago. Hopefully it won't take that long for research to be done that discovers the mechanism behind what I suspect to be autoimmune/allergy-type reactions caused by leaky gut, but it might.