Dr Maria Castells CSF Mast Cell Activation Disorder

Dr Maria Castells from Brigham and Women's Hospital on MCAD March 19,2014

 

Great video!

Begs the question though, why do they keep using tryptase as a marker when it clearly misses so many people with MCAS? Surely some of the other markers would work better? I can't see keeping it included in the diagnostic criteria at all.

Everyone with POTS and EDS for sure should pay attention to MCAS.

 

I don't know if I have mast cell problems but since starting rutin, one of the things in Neuroprotek from Dr Theoharidies, I feel better. More energy, able to tolerate light better, some mental clarity. And this is just in a week.

 

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...

 

Did you buy the Afrin book?

 

Indeed!!!! Quite the read so far, but I'm chipping away at it... Maybe halfway thru?

 

@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.

 

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.

Thanks for the kind offer on the ketotefin -- not sure yet what I'll be taking if I do have MCAS. I'm super curious about all the different options. I haven't gotten to that chapter of my book yet, but I peeked ahead and browsed a little. I'm super interested in the effects of antihistamines --- I had been taking Claritin for seasonal allergies most of last spring/summer and in hindsight I felt better! That would really make sense if its MCAS! But geez --- is it really safe to take stuff like that long term? (They told me it was OK to take Omeprazole for heartburn long term and I wound up nutrient/vitamin deficient and super sick! In fact just about a year after that "prescription" is when I became disabled and housebound!)

What I'd really like to know is what treatments are there for MCAS that are "natural"? I already take so many damned supplements, plus thyroid meds, I'd love to keep things to a minimum. And I'm ready, but somewhat reluctant to chase a low histamine diet. I've modified my freaking diet a bazillion times already to not much avail. How can I possibly give up even more food?!!! UGH!!! And how can CHOCOLATE be on the list to avoid?!! BLAAAAAST!!!!!

 

I saw no chocolate. I'm sorry, but I can't. But it also said if you don't have a reaction you can have it. This is going to be tough, more from a prep point of few for me.

My immuno might know I'll ask him. I'm hunting for a new integrative doc so...

Sorry I can't most of what you wrote. My brain cant handle much today. Can you must list the tests?

Typtase? prostaglandin?

 

Sorry @Who Me? I'll keep it simple:

blood test for Tryptase, and

a 24 hr urine test for.... N-methylhistamine? and prostaglandin?

(wasn't sure on those - no results back yet)

Hope you feel better soon!

 

Oh yeah -- prep wise for low histamine diet --- "no leftovers". Ummmm yeah -- THAT is a problem for most of us I presume!

 

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.

I found this. It's old but probably some good info

http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1296696091

 

And fruit and veggies is gonna be an issue. What I eat is bad. No clue what to substitute. No bananas or avocado?

It's hard when you can't prep or get to a store weekly.

 

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.

 

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.

Thanks for the info @Remy Can you tell me how you would react to a trigger food? I know we are all different .