Dr Maria Castells CSF Mast Cell Activation Disorder

[Who Me?]

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

 

[Remy]

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.

 

[Who Me?]

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.

 

[Lissa]

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...

 

[Remy]

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?

 

[Lissa]

Did you buy the Afrin book?

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

 

[Cort]

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

Let us know how it goes! Good luck

 

[Who Me?]

@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.

 

[Lissa]

@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!!!!!

 

[Who Me?]

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?

 

[Lissa]

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!

 

[Lissa]

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

 

[Who Me?]

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

 

[Who Me?]

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.

 

[Remy]

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.

 

[Who Me?]

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 .