It's exciting to see this forum and to find others finding solutions to their mast cell issues!
My mast cell "stuff" started after being stung by a wasp in Sept 2006 and having a terrible reaction. I didn't take the wasp sting as seriously as I should have since I had merely localized hives/swelling. I didn't see my allergist, and just treated it topically. By December 2006, I had terrible stomach pains and diarrhea and got diagnosed with H Pylori.
Through the last several years, I've been diagnosed as having Bile Reflux (no gallbladder - but still put on 2-250mg Ursodiol daily for this) and some type of Mast Cell disorder.
I don't have systemic mastocytosis (per triptase test), but more likely a mast cell enterocolitis according to one GI doc I saw. I've taken Gastrocrom on an off for the last few years, but I don't seem to tolerate it well.
I have intestinal manifestations from the mast cell disorder (urgent bowel movements) and also skin manifestations - pimply hives on my neck and face. The Gastrocrom resolves the intestinal issues, but makes the pimply hives worse! And I'm not taking near the recommended dose of 2-100ml vials 4x per day. I take a little less than 1-100ml vial broken up into 3 doses per day. If I take more, I have horrible nausea and diarrhea.
I'm also taking 1/2 a Zyrtec once per day - can't take a whole one because of dry climate in Colorado during the winter. In the spring and summer, I can take a whole one.
I don't tolerate Zantac but for short term uses of maybe a week. Then my stomach starts to hurt and I get diarrhea again.
I'm seeing Dr Miner in OK City now (travel down there every 6 months or so) who is trying to get to the bottom of all these reactions and that I don't tolerate medicines well and ALSO that I'm only able to eat a very limited diet of 4 foods (chicken, turkey, potato, broccoli).
Anyone have any ideas?
Nicole