I was diagnosed with MCAS in the US by a specialist. He measured tryptase and histamine, which have been normal, but repeated Chromagranin A and Prostaglandin D2 tests have been consistently high, verifying the MCAS.
My symptoms were pretty well controlled with optimal methylation, B5, and vitamin C, but IVIG flares it up, particularly in my intestines and I get swelling in my neck and brain.
My doctor prescribed ketotifen and fexofenadine to begin with. Boswellia is effective for the brain swelling, and I get curcumin IVs the day after IVIG to reduce the flare (I take 3g a day of Thorne Meriva curcumin already.)
I still has intestinal symptoms, so my doctor dropped the fexofenadine and added ranitidine (Zantac) and cromolyn sodium, which finally controlled the symptoms.
It's a lot to take, so I'm interested in reducing the meds to just what's the most effective. I'm concerned about the Zantac is not good for the microbiome and don't need an acid blocker so am wondering if there is an alternative that could block H2 without affecting the microbiome.
I've attached Dr. Afrin's list of MCAS meds.