i got my first tryptase test at a routine clinic visit, not during a flare. came back normal. for like six months after, i was convinced i didn’t have MCAS - labs were normal, right? then i got hit with a bad reaction at home, called my allergist to cancel the appointment because i was mid-flare, and when i mentioned what was happening she said “next time this happens, get to the ER and ask them to draw tryptase while you’re reacting.” i didn’t even know that was an option.
turns out tryptase only stays elevated for a few hours during an actual event. if you test when you’re fine, baseline tryptase can be totally normal even if you’re having true mast cell reactions. i got re-tested during my next flare. it spiked.
suddenly MCAS was on the table instead of “maybe anxiety.” did anyone else get told their tryptase was fine, only to find out later the timing was the problem? how did you end up getting the real answer?