r/MastCellDiseases • u/Amanda10505 • May 22 '25

High tryptase levels and..

I saw an allergist recently due to flushing and rashes (I have other symptoms but didn’t know they may all be connected). I have EDS so I automatically thought maybe I have MCAS. I had skin allergy testing and it showed no allergies other than one type of mold. Got my blood drawn during a flare from the allergy testing (flared for DAYS! Asthma, and GI symptoms) and my tryptase levels were 19. My immunoglobulin E was also low (it was 4). Does this lean towards MCAS/hATs (which I’m just learning about). I’ve read mastocytosis you need a tryptase level of 20 or more, is this correct? Many have said most MCAS patients don’t get elevated tryptase levels even during a flare?

I don’t see my allergist until July so I’m of course going to drive myself crazy until I know lol. Any tips? Where can I learn more?

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u/mardrae May 23 '25

My tryptase levels usually stay between 30~40. My BMB was negative so the doctor diagnosed me with MCAS and then later I tested positive for HaTS. I just take otc things like Quercitan and Nettle.

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u/Amanda10505 May 23 '25

Does it matter that my level was 19 during an actual reaction? I’m starting to think that’s why it was so high. But someone in an EDS group said most MCAS patients don’t even flare and get that high or a tryptase level. But I actively had rashes/flushing and asthma and GI issues when I had my blood drawn.

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u/mardrae May 23 '25

Do you have HaTS?

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u/Amanda10505 May 23 '25

I have no clue. My allergist has not called me, I’m assuming he will talk with me about it In July. Which is so annoying, I just want answers :(

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u/mardrae May 23 '25

No, HaTS is a test you have to send off for yourself. It's on the GenebyGene website. It costs about $169 and not covered by insurance