Please tell me someone else has an elevated tryptase (above 20) and neg BMB or neg KIT D816V gene...


Had a very long conversation with Dr Wilson about our situation and until recently I have never really cared what form or what label they have given my husband. I knew mast cells were involved, he responds to antihist thats all the proof I need. he said its not systemic masto and its really not MCAD since his tryptase is elevated.

That its very unusual and that Masto people usually dont have autoimmune disorders either...but it sounds like a lot of people have autoimmune disorders on this forum???

Isnt this unusual enough...does it have to be even more unusual, rare, odd, unexplainable!!!

Any feedback is always appreciated!!!

Thanks Joan maybe I said it wrong but the CKIT D816v via bone marrow
Isn't it easier to miss if it's taken by blood? Or maybe I'm completely confused. He said that he does not have the genetic mutation for SM but tryptase is elevated....if tryptase wast elevated he'd fit into MCAD.

It sure seems like a lot of people have autoimmune disorders so I was surprised that he said it's unusual.