Has anyone heard that heparine level is no longer a part of the diagnosis criteria for MCAS?

I apologize for jumping the gun. I should have waited before posting this question. I've had an aweful time with doctors lately. I was at my local mast cell doctor appointment at Vanderbilt and the intern comes in first and asks questions. This particular intern was questioning my MCAS diagnosis. That got me started up! I was telling him how Dr Afrin tested me and that my prostaglandin D2, histamine were slightly elevated and my heparin was three times higher then normal. He cut me off and informed me that according to the top mast cell doctors heparin is no longer an accurate indicator of MCAS. I was floored and fairly confident he was wrong. He also was trying to say i had IBS and that was the cause for my diarrhea! he left and i waited over a half hour for the real do tor to come in. So while waiting I was trying to do a fast search on my phone to find proof that what he said wasn't accurate. That's when I posted this question. When the real doctor came in I discussed it with him and he informed me that Dr Metcalf spent some time there at Vanderbilt talking about Mastocytosis and MCAS. What Metcalf said was (I hope I can get this right) the urinary metholhistamine test is not an accurate test for these illnesses. So the intern got it wrong.

I do appreciate your quick response Heather. Thank you!

Kim

LOL Deborah! And yes I did mean an intern student. The real doctor clarified it all for me. That was a good lesson for me to not get my britches knotted up over a wet nosed wanna be.

According to one particular mast cell specialist there are HUNDREDS of mediators involved with mast cells but medicine has not reached a point where it has found a way to test for most of them.