Quick background...the family joke is that I need a bubble to live in. My DS21 says he is more surprised when I feel great as opposed to bad. In Oct 2012, I had enough every time I ate wheat, I felt sick. It was easier to have low blood sugar than eating a pack of crackers. Celiac blood work was negative, so I moved forward assuming non-celiac gluten intolerance. So I have been gluten free since October 19, except for accidents. Then on December 26, I ate out and before finishing eating I knew I had been cross contaminated. It started out normal (nausea, abdominal pain, feeling need for bathroom). Within an hour it progressed to blood red itching palms, dizzy, seeing black spots, "D", feeling as if couldn't make it out of book store. Took 50mg Benadryl.  Within 40min, I was red head to toe, broke out head to toe and couldn't breath so I used my epi-pen (allergic to bees) and headed to ER. On January 11, I saw an allergy doctor. Out of 119 foods I'm not allergic to any!  Not even wheat. This is the point where he told me I need blood work and 24hr urine testing due to mast cell activation disorder, mastocytosis or idiopathic anaphylactic. He started me on Zantac 300mg and Allegra 360mg each day and told me I could eat whatever I wanted. I ate out Saturday (took Zantac only in am) ordered what I have safely eaten before but felt the tummy issues (very manageable level) before finished eating but within hour itching so I took the Allegra and itching was gone in 30 min. Within the past hr, I had some safe soup but I added three saltines. Before I finished I felt tummy issues and now I'm itching (not as bad as Saturday). I am now taking both the Zantac and allerga in am.

I am scheduled to go back to dr March 8. I'll have blood work (trypase, c4, tsh, thyroid AB, sed rate,Chroni laticori index? Alpha-gal?) and drop off the urine (VMA, HVA, 5-HIAA, metanephrine) in the morning. Sorry had to guess at a couple of those couldn't read the writing. He did give me 12 refills on the meds.  

Any input will be greatly appreciated. I only remember mast cell deal with allergies from school  

Hi Davina,

It sounds like you have a pretty good allergist!  That's an excellent batch of tests to start with.

True (IgE) allergies are no more common in mast cell patients than they are in the general population, however... lots of things can be "triggers" for us that don't show up on allergy tests.  Also, when you're eating a meal there are a couple of other triggers to consider: heat (my first big attack was caused by a cup of tea followed by a large bowl of soup) and also the mechanical action of your GI system.  As you probably know, even "normal" people have tons of mast cells in their GI system.  They're a very important part of the immune system, but when you have too many and/or they're trigger happy, well... the simple action of food moving through your system can set them off.

I stopped having big (go the ER) attacks when I started taking antihistamines on a daily basis.  I also take oral cromolyn sodium, Singulair (even though I don't have asthma), and some vitamins including C and B6.  There are lots of medication lists on this website.  You've probably been looking around already, but it's good to educate yourself before your next appointment!  I've had to nudge most of my doctors in the right direction.

Heather

Hi Davina,

I've had small amounts of protein show up from time to time... and then (just like you experienced) it goes away.  I'm not diabetic and there's nothing else to attribute this to.  I'm 99% sure it's MCAS-related.

Heather

Thanks Romana. Off to look up the diet, hmmm wonder if I can lose weight on it

It was once a day. The Zantac is a 300mg capsule. I saw on here after I had a grilled turkey and Swiss sandwich (gluten free bread) that cheese can be a trigger.  I reacted with nausea and itching, so I medicated with Pepcid and 1/2 a Benadryl (had my grandson so had to stay awake) If its a fat free American sliced cheese, would that be okay?

I just read that swiss cheese is a mast cell degranulator!  I don't know how it's different from other cheeses, but it must be the culture used to make it.  The bottom line is, if you react to it, don't eat it again for a while.

Also, when you're trying a food to see if you'll react, start very small.  Someone suggested placing a piece of something you're testing between your lip or cheek and your teeth.  If it tingles or you feel a reaction, then don't swallow it and avoid it in the future.

Aged cheese is supposed to be avoided on a histamine-free diet.  Fresh mozzarella seems to be tolerated by a lot of people.  Good to read labels and avoid additives until you figure out your triggers.