Mast Cell Disorders Forum - Can this be MCAS/MCAD?

IsItMCAD

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Can this be MCAS/MCAD?
04/05/13 at 17:03:59

Hi everyone, I'm new to the forum. I've been having issues with facial flushing, and I notice it seems to often be triggered by eating certain foods as well as heat and sometimes activity or stress. Taking zantac and allegra seems to help quite a bit.

I saw Dr. Gotlib at Stanford and he felt I did not have it. He did one test, a genetic test, and said it was normal. He said I could do a bone marrow test if I want but that he does not think I have mast cell activation disorder. I've heard of others getting other tests done, what do doctors usually test for?

Some of my other symptoms include fever, nasal congestion, fatigue. I also have orthostatic intolerance/POTS, and migraines. I don't get hives but I have a past history of getting them chronically for years.

When I read the symptoms for MCAD I felt I had many of them. I also thought the fact that I responded well to zantac as a preventative and allegra was a sign that it may be MCAD. What do you others think? Thank you.

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Anaphylaxing

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Re: Can this be MCAS/MCAD?
Reply #1 - 04/06/13 at 18:54:08

That's how things started for me. MCAS is at first a diagnosis of exclusion, so they need to make sure nothing else is going on.

Try to figure out and cut out the foods that make you flush as reactions can get worse.

MCAS is not equivalent to mastocytosis but a lot of docs don't believe in it or are not aware of it.

Biggest thing is figuring out triggers, avoiding them and figuring out daily meds that might help you if it's allergic reactions or mcas you're dealing with.

My flushing first started at the hair salon and after eating who knows what. I've been on an elimination diet for over a year and am trying to sort it out.

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IsItMCAD

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Re: Can this be MCAS/MCAD?
Reply #2 - 04/16/13 at 09:28:56

Thanks. I have been doing that with triggers and things are not so bad as long as I take allegra, zantac and avoid food triggers. However avoiding heat has been harder, like in the shower, etc. And I don't like taking zantac since it affects my stomach acid, but I have to take it or I get much much worse.

Still I'm confused about why the doctor seemed so sure I don't have it. And also why he did only one test. I'm curious what other tests people are getting and if others who've seen Dr. Gotlib at Stanford had more testing done. Any tips on seeing a doctor to get an official diagnosis? I am on the west coast and right now cannot travel far to a specialist. I thought the dr. I was seeing was a specialist but did not find the visit helpful at all. Maybe I'll make a post specifically asking about tests and doctors. Thank you.

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Anaphylaxing

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Re: Can this be MCAS/MCAD?
Reply #3 - 04/16/13 at 16:43:28

Some of the testing that can be done is urine n methylhistamine and prostaglandins, serum tryptase. Did he check for the c-kit mutation?

some test serum heparin. That being said I test negative for almost everything and still have it as a working diagnosis.

I would think perhaps the doc you are seeing is not as open minded as some with the MCAS diagnosis as it is not something that can be excluded with one test unless they've diagnosed you with something else based on that test....and even then a person could have both! If the meds are helping you stick with that and sort out triggers and then maybe you'll feel well enough to travel to an MCAS expert.

I traveled once and had to take high dose steroids and it wasn't fruitful. I didn't go to an MCAS specialist. I haven't been able to travel since, but have had my docs work with an MCAS specialist remotely.

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IsItMCAD

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Re: Can this be MCAS/MCAD?
Reply #4 - 06/18/13 at 10:18:26

Anaphylaxing wrote on 04/16/13 at 16:43:28:

Some of the testing that can be done is urine n methylhistamine and prostaglandins, serum tryptase. Did he check for the c-kit mutation?

some test serum heparin. That being said I test negative for almost everything and still have it as a working diagnosis.

I would think perhaps the doc you are seeing is not as open minded as some with the MCAS diagnosis as it is not something that can be excluded with one test unless they've diagnosed you with something else based on that test....and even then a person could have both! If the meds are helping you stick with that and sort out triggers and then maybe you'll feel well enough to travel to an MCAS expert.

I traveled once and had to take high dose steroids and it wasn't fruitful. I didn't go to an MCAS specialist. I haven't been able to travel since, but have had my docs work with an MCAS specialist remotely.

Yes he checked the mutation and I did not have it. That was really all he tested. No urine tests. I'd had tryptase tested before and it was barely elevated so he did not retest. Not sure why he didn't. So are your doctors able to work with the specialist even though you've never seen the specialist before? Did your regular doctors give you the diagnosis or the specialist? Thank you so much! My symptoms are managed at times and very bad at other times, like right now, so I'd really love to be able to find a way to get it under control more consistently. When it's bad it really affects things a lot.

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