Bringing over a post of mine from the old forum...
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People often come here and ask, "If I suspect I have a mast cell disorder, what tests should I ask for?" So... I put this chart together based on the recent article on MCAS written by doctors Akin, Valent, and Metcalfe.
No doctor is going to order all of these tests at the same time. It's really up to you to work through them systematically, keeping records of the results.
STEP ONE: baseline tryptase
(GP, allergist)
Normal... go to step three
Abnormal... go to step two
STEP TWO: bone marrow biopsy plus testing for mutations, CBC
(mast cell researcher, hematologist if you absolutely can't travel)
Normal... MMAS (as long as the CBC is normal)
Abnormal... SM
STEP THREE: RAST plus total IgE
(allergist)
Normal... go to step four
Abnormal... IgE allergies (rule out infections/parasites)
STEP FOUR: antibodies to FceRI, anti-IgE
(allergist... preferably one who's also an immunologist)
Normal... go to step five
Abnormal... autoimmune mast cell disorder (rule asthma, lupus in or out)
STEP FIVE: CBC, CMP, CA-125, Chromogranin-A, CRP, ESR
(GP, immunologist)
Normal... go to step six
Abnormal... can suggest a neoplastic or inflammatory disorder (more testing needed)
STEP SIX: C1q, bone marrow biopsy, mediators (tryptase, histamine, prostaglandins) during flares
(GP, hematologist, immunologist... bone marrow biopsy only by a mast cell researcher)
Normal... idiopathic urticaria, anaphylaxis, and/or angioedema
Abnormal... C1q is for hereditary angioedema (HAE), BMB could still suggest MMAS (based on mutations), elevated mediators on at least two occasions needed for MCAS diagnosis
I hope this is helpful. I was going to make a flow chart with lines and boxes, but it was getting a bit too complicated
Heather
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I can't stress enough how important it is for YOU to take charge of your health care and keep track of all your lab results. Unless your symptoms are strictly limited to your skin, you're going to be dealing with doctors from different specialties... and that gets COMPLICATED. The best thing is to keep your labs in a special folder or binder so you can easily pull them out when you see a new doctor.