Type 1: This Immunologist/doctor uses a holistic approach and makes the diagnosis of MCAS based on a plethora of blood/urine and other testing, clinical symptoms and if drugs like antihistamines and mast cell stabilizers improve symptoms.
This kind of doctor uses the same diagnostic criteria that TMSforacure, Afrin, Molderings and every study I've personally come across (and that's a lot, to give perspective, I could read a 300 page book in 2 days, 5 hours each day, and teach myself an entire upper division science course in a week and ace exams others spend months for the same result. And I've been obsessively researching MCAS for almost 2 yrs). If tryptase is normal but other mast cell mediators are elevated then that minor criterion for MCAS is considered fulfilled for doctors of this type.
Type 2: This kind of doctor makes the diagnosis of MCAS using a single diagnostic criterion. If your tryptase is greater than 20 ng/ml or your baseline trypase increases by 20% plus 2 ng/ml after a reaction. And if you don't have this then they will say with absolute confidence that you do not have MCAS. You can bring up a plethora of other blood work and symptoms that strongly indicate mast cell activation and they will viciously explain it all away with a logic so convoluted and fallacious that, if believed, the only conclusions that can be drawn is that labs always mishandle blood samples and you don't have 1 disorder but over 20 different ones. They'll also misinterpret and twist what you say in a way that you can't help but think they're talking about another case.
If you're like me, you don't just accept something, especially wild conjecture, without proof no matter who it comes from. And if you're like me you thoroughly understand how your disease works, right down to the molecular level. Question their logic and point out their inconsistencies. Ask why is this [mast cell mediator] level so elevated if mast cells aren't the problem, where could it possibly come from? They'll buckle. One allergist I saw, just kept saying "you don't have MCAS" in an increasingly authoritative voice over and over. That's not how this works doc, you need something called evidence and proper reasoning to prove why something that behaves exactly like MCAS isn't MCAS. This particular allergist recommended a psychiatrist for my "fixation." Newsflash, been seeing one for almost 7 years and all I have is ADHD.
Next thing you can do is genuinely ask "if it isn't MCAS, then what can it be? What tests do you recommend to figure this out?" Again they'll buckle and have no answer and try to end the appointment. I've had this happen with 2 Allergists. Both good people I assume but out of touch with research and irrationally fixated on what I suspect was the old approach to MCAS. They'll say everything you're doing is wrong with no proof or differential diagnosis and then shrug their shoulders when you accept their claim and ask what to do for the symptoms.
My main Immunologist confirmed these two schools of thought to me Take my experience as a cautionary tale. MCAS is hard enough as it is, you don't need anyone that has no answers wasting your time and energy.
This kind of doctor uses the same diagnostic criteria that TMSforacure, Afrin, Molderings and every study I've personally come across (and that's a lot, to give perspective, I could read a 300 page book in 2 days, 5 hours each day, and teach myself an entire upper division science course in a week and ace exams others spend months for the same result. And I've been obsessively researching MCAS for almost 2 yrs). If tryptase is normal but other mast cell mediators are elevated then that minor criterion for MCAS is considered fulfilled for doctors of this type.
Type 2: This kind of doctor makes the diagnosis of MCAS using a single diagnostic criterion. If your tryptase is greater than 20 ng/ml or your baseline trypase increases by 20% plus 2 ng/ml after a reaction. And if you don't have this then they will say with absolute confidence that you do not have MCAS. You can bring up a plethora of other blood work and symptoms that strongly indicate mast cell activation and they will viciously explain it all away with a logic so convoluted and fallacious that, if believed, the only conclusions that can be drawn is that labs always mishandle blood samples and you don't have 1 disorder but over 20 different ones. They'll also misinterpret and twist what you say in a way that you can't help but think they're talking about another case.
If you're like me, you don't just accept something, especially wild conjecture, without proof no matter who it comes from. And if you're like me you thoroughly understand how your disease works, right down to the molecular level. Question their logic and point out their inconsistencies. Ask why is this [mast cell mediator] level so elevated if mast cells aren't the problem, where could it possibly come from? They'll buckle. One allergist I saw, just kept saying "you don't have MCAS" in an increasingly authoritative voice over and over. That's not how this works doc, you need something called evidence and proper reasoning to prove why something that behaves exactly like MCAS isn't MCAS. This particular allergist recommended a psychiatrist for my "fixation." Newsflash, been seeing one for almost 7 years and all I have is ADHD.
Next thing you can do is genuinely ask "if it isn't MCAS, then what can it be? What tests do you recommend to figure this out?" Again they'll buckle and have no answer and try to end the appointment. I've had this happen with 2 Allergists. Both good people I assume but out of touch with research and irrationally fixated on what I suspect was the old approach to MCAS. They'll say everything you're doing is wrong with no proof or differential diagnosis and then shrug their shoulders when you accept their claim and ask what to do for the symptoms.
My main Immunologist confirmed these two schools of thought to me Take my experience as a cautionary tale. MCAS is hard enough as it is, you don't need anyone that has no answers wasting your time and energy.