Very interesting. I didn't realize you had gone through all the mast cell testing. I can't believe it didn't get you anywhere! But that's good to know, so will help me manage expectations. I have read very similar info re: the antihistamines (h1 and h2) and, like you, prefer to avoid meds if at all possible.
I guess my thoughts are to possibly consider them for the short term...if they seem to help, just so that I can calm things down enough to start treating my gut dysbosis. My functional med dr. (who will likely be more helpful than the allergist) thinks my mast cells are upset b/c of the leaky gut, gut bugs (2 parasites, h pylori and candida all confirmed) and possibly thyroid dysfunction. I just worry that I won't be able to eliminate the bugs with this MCS so I need to stabililze the mast cells in order to get to them. As for the caffine effect, I've read that Quercetin can have that. The 2 days I tried a tiny amount of zyrtec, I actually got VERY sleepy early in the evening, which I was happy about since I need the sleep.
Perhaps I will just have to do that with time if the antihistamines don't work. He has me on an herbal D-hist w/ Vit c, nettles and quecertin now. I just take a small amount, MUCH less than the bottle suggests. I've also added in dig. enzymes since I"m not absorbing fats/nutrients. I've only gained 2 lbs and am still at 104 lbs, way too small. And I"m constantly hungry! This diet is hardly cutting it, but I know I have to stick with it though I'm slowly adding things in, like collard greens, which have been ok and yummy w/salt, butter.
Thanks for the info on your experience w/ a mast cell expert. The one I"m going to see suppossedly is as well. While I don't think I have mastocystit, I would like to know if I have MCAD or did my body just get off track b/c of the gut issues and the vacinnes? I'll make a new post about the vacinnes.