Thought I'd share as I have had no flares for about 3 months now. My mcas manifests in gut, gums, tongue, lung. Tested high tryptase but not properly done by doc so didn't get baseline versus flare scores.
I've been on ketotifen now about 6 months, max 2mg at bed time. I've just reduced that to 1mg slowly. Before that I had other antihistamines. Terrible reaction to quercetin makes me feel awful.
The thing that helped most is supporting methylation and supplemental choline as genetics show I have compound heterzygous MTHFR and homozygous PEMT. On first taking choline I immediately felt sleepy which showed it was needed. Now I have added TMG, l-serine and SAMe which are also helping. I still believe the ketotifen is an important element but also it makes me more forgetful so pleased to reduce that.
The result of this is a stronger gut with less food reactions and less anxiety and most importantly no systemic flares for some time now.
I understand that mcas can have different causes but for me it seems to be deficiencies in these substances. Correcting them has given me stronger cell membranes and calmed the parasympathetic nervous system.
Given that 1 in 10 people has these genetics it would be interesting to hear anyone else has tried this?