Gluten and Cross-Reactive Foods

Sounds like Mast Cell Activation Syndrome to me.  All the foods listed in the article are known mast cell degranulation triggers (those foods cause mast cells to release histamine).  

Mast Cell Activation Syndrome can cause elevated IgG and IgE readings.  

On 8/25/2019 at 8:32 AM, cyclinglady said:

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:

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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.  

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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?  

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

 

@cyclinglady, in my 20+ years of having celiac, I have found this page to be at the forefront of the celiac breaking news. Scott is always forthright in what goes on this page. The government approved sites and celiac groups are years behind everything that Scott allows on here. I was lucky I found blog withinh months after I was diagnosed in 1998. (Thank you Scott, it has been a God send!!) Whenever I have had any issues with my celiac, he always has the newest research from all over the world, and this blog was ALWAYS right even when no one else concurred. I am a Certified Nutritional Consultant and Certified Master Herbalist. I have helped MANY people because of this very blog, because it is years ahead in the celiac game. 

Antibody cross-reactivity has a VERY specific meaning for immunologists and is very important when developing/using antibodies in the laboratory or for diagnostic blood tests. It would be relatively easy to test if there was interest.  Immunologists are probably not interested because it is unlikely that the antibodies in celiac disease also bind to all of those other foods.  There is probably something else going on that non-immunologists are calling cross reactivity.

34 minutes ago, RMJ said:

Antibody cross-reactivity has a VERY specific meaning for immunologists and is very important when developing/using antibodies in the laboratory or for diagnostic blood tests. It would be relatively easy to test if there was interest.  Immunologists are probably not interested because it is unlikely that the antibodies in celiac disease also bind to all of those other foods.  There is probably something else going on that non-immunologists are calling cross reactivity.

I agree with your comment.  Well said.  

8 hours ago, Guest Amy in NW said:

@cyclinglady, in my 20+ years of having celiac, I have found this page to be at the forefront of the celiac breaking news. Scott is always forthright in what goes on this page. The government approved sites and celiac groups are years behind everything that Scott allows on here. I was lucky I found blog withinh months after I was diagnosed in 1998. (Thank you Scott, it has been a God send!!) Whenever I have had any issues with my celiac, he always has the newest research from all over the world, and this blog was ALWAYS right even when no one else concurred. I am a Certified Nutritional Consultant and Certified Master Herbalist. I have helped MANY people because of this very blog, because it is years ahead in the celiac game. 

I am not disputing the helpfulness of celiac.com nor food sensitivities.  I think we are just getting hung up on vocabulary.  

What are the 4 R"s that heal the gut mentioned in this article?

Yep! The article is spot on.  I found a "gut healing" supplement that improved my ability to tolerate some cross-reactors.  I take it for 75 days at a time, then rest 2 months and repeat.  It is healing my intestine enough to be able to ingest some cross-reactors that I had been without for 10 years.  These are: cage-free eggs, aged parmesan/cheddar (9+ months). SB Blonde coffee, heavy whipping cream.  The "higher" the fat content of dairy the better the product is tolerated. Enjoy brand chocolate is okay & is dairy free.   Have not tried: buckwheat, hemp, millet.  I've always had life-long reactions to milk protein: skim/regular milk and all products containing these are NEVER consumed. Potatoes, tomatoes & other lectin foods are best used in limited quantities.  Yeast is the WORST reaction to date! Quinoa saponins, soy, sesame & oats cause reactions.  I cautiously read product labels and never buy items with carrageenan or guar gum. Being able to enjoy eggs again is the best thing in the whole world & I need no other cross-reactors. 

Every celiac should react to rye.  It is one of the 3 common triggers for a celiac reaction.  Oats are a known trigger for a subset of the celiac population.  Wheat, rye, and barley are the celiac primary reaction triggers.

• Amaranth
• Buckwheat
• Chocolate
• Coffee
• Corn
• Dairy, i.e. milk and cheese (alpha-casein, beta-casein, casomorphin, butyrophilin, whey protein)
• Egg
• Hemp
• Millet
• Oats
• Potato
• Rye
• Rice
• Sesame
• Sorghum
• Soy
• Tapioca
• Teff
• Yeast

"Cross-reactivity" due to similar proteins on different substances is not the problem here. What's happening with gluten sensitivity is that some recent environmental factor mixed with a genetic propensity toward auto-immune conditions is causing increasing numbers of permeable or "leaky" gut cases. What in the environment is irritated the gut lining of so many people? Substances are consequently crossing the intestinal lining that should not, and triggering an immune reaction, and or not getting digested leaving gut bacteria to 'digest' it causing gas, belching, cramping, and bloating. Dairy is not cross-reactive, but lactose-intolerance frequently precedes gluten-sensitivity. Many people with Crohn's disease benefit by going on an elimination diet, and yes, gluten and dairy are eliminated. Alcohol is not cross-reactive, it simply makes the gut more permeable. That is why people with Crohn's disease or psoriasis sometimes flare up after drinking alcohol. I'm glad you are trying to help people with symptoms, but "cross-reactivity" is a guess that jumps to semi-incorrect conclusions, and you may be doing patients more harm than good. These people need a complete Elimination Diet to follow for 3 days minimum (they should see some improvement) or 4 weeks which is better. If symptoms improve, then food groups can be added one at a time to see if symptoms return within 3 days. Repeat with each food group. That's the real treatment at this time.

@GFinDC good point, and Rye should not have been in that list...I corrected it.

On 8/24/2019 at 6:38 PM, kareng said:

 

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.  

Agree with another poster that science just hasn't caught up yet.

I was diagnosed with gluten sensitivity in 2013. That first year I was diligently avoiding wheat like the plague but still having issues. By process of elimination, I realized oats effected me the same way that wheat gluten does, and can't eat it anymore. Two years, still having issues until I eliminated coffee. My reactions to oats and coffee are identical to my reaction to wheat gluten.

Most recently I've had some reactions to gluten free bread and believe it is sorghum.

Science can say what they want, but until they've walked a mile in our shoes, I'll listen to my gut....

Science has recently discovered more about the biological mechanism at the cellular level that causes the severe reaction to gluten in some with celiac.  It appears to be due to cytokine release.  It could certainly be possible for other foods to also cause cytokine release (not due to antibody “cross-reactivity”) because cytokine release is NOT limited to gluten and those with celiac.

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