Dr Maria Castells from Brigham and Women's Hospital on MCAD March 19,2014
Great video!Dr Maria Castells from Brigham and Women's Hospital on MCAD March 19,2014
Did you buy the Afrin book?I'm getting tested for MCAS..... Should hear something next week maybe? I bought a couple books to study up --- so far from what I've read, it seems to line up with a bunch of my symptoms. Food intolerances, POTS lite, flushed face, random weird sun-induced blotchy skin rashes, hypothyroid, SIBO, plus yada yada with all the matching CFS sh*tstorm symptoms. Really pretty fascinating...
My naturopath wasn't familiar with MCAS, but I had been researching a bit through the forum, misc. websites, plus a couple books I found. He was very interested in the possibility, and was able to look up some basic tests online -- not sure they are definitive of absolutley having MCAS, but could lead towards diagnosis? Anyway - one was a blood test for Tryptase, and the others were a 24 hr urine test for.... N-methylhistamine? and prostaglandin? I haven't gotten those back yet so I'm guessing from memory as to what they were looking for.@Lissa What tests are you getting for MCAS? I want to ask my immuno or to a new PCP when I find one. I am starting on a histamine protocol since I have so many weird things that could be mast cell related. At least I'll try.
I bought a ton of ketotefin for really cheap so if you want the source PM me.
I'm thinking of cooking stuff and freezing it then nuking in the morning. Or find a protein drink. I am feeling a bit better today than I had been (maybe from stopping LDN) so I might be able to managed it. Gotta find one with stevia.Oh yeah -- prep wise for low histamine diet --- "no leftovers". Ummmm yeah -- THAT is a problem for most of us I presume!
oh so i don't have to do a crazy diet? I don't think I react to foods that much. I can clean up my diet some but it's tough when you can't do much.Dr Afrin hedges his bets on the diet aspect. He does not apparently currently recommend a low histamine diet to his patients.
My worst trigger foods are low histamine and vice versa so I don't personally worry much about diet these days. It was very scary when I was reacting a lot to foods though and I hope I never go back to that place.
Tryptase is almost always normal in MCAD. I think the plasma histamine and the urine tests are probably the most helpful at this point.