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