Maybe some answers finally?

[mcbphd1]

I have been mystified for about 2-3 years as to how I continue to have celiac-reactions while being fastidiously gluten free.  We have a fully gluten free kitchen.  The kids bring fast food into one back room of the house, eat it on paper plates, and dispose of them outside.  I do not eat in restaurants or at other people's houses.  I have tried Fasano, low Fodmaps, and ketogenic diets. I have avoided all grains.  I have checked pet foods for gluten.  I have checked all dental, cosmetic, and other products.  Despite all of that, I still have reactions like I have been glutened.  I have neurological, psychological, cardiovascular, and ultimately gastrointestinal symptoms.  Finally, after much research and visiting a very good allergist, it seems that I am indeed reacting to things other than just gluten.  First, I am allergic to eggs.  After eliminating eggs for a month, my stomach and gastro issues are 80-90% improved.  Second, it appears that I have a mast cell disorder - mast cell activation syndrome, or MCAS.  This means I have greatly exaggerated reactions to exposures to miniscule amounts of triggers, including gluten.  It also means that I have allergic-type and anaphylactic reactions to foods sometimes but not always, and that my reactions are very similar to being glutened.  It explains why Xanax has always been so helpful - I always thought it just helped with the anxiety associated with reactions, when in fact, it is also a mast cell stabilizer.  I wanted to encourage those of you who are still looking for answers not to give up - I am six years post-diagnosis.  I am in fact super-sensitive, but I also have other issues and am working on making sure I have identified all of my identifiable triggers for MCAS flares.  As some of you know I'm sure, sometimes there is no one trigger for a flare, just an accumulation of environmental, food, and stress triggers. I'm interested in knowing if others here have both celiac and MCAS, and how you are dealing  with it.  

[cyclinglady]

Thanks for sharing!  I am sure your posting will help someone else! 

Mast Cell Activation Syndrome/Disorder is real.  We have discussed it many times in the past.  Here is one post that might help with coping methods.

https://www.celiac.com/forums/topic/105835-mast-cell-activation-syndrome-mcas/

I personally think an active celiac or autoimmune flare-up contributes to triggering mast cell reactions or at least the severity of them.  For me, I react to medications and insect bites (hives, swelling, abdominal pain, vomiting, losing consciousness, and  very low blood pressure (the main reason paramedics take me to ER).  

I hope your MCAD is not too severe.  My heart goes out to those where it really impacts their daily life.  

[ch88]

This may be useful. 

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