So I saw Dr. Chin yesterday. My histamine and tryptase were normal (which I knew, I knew we weren't looking at masto, but I guess he didn't know that) anyways, he said a normal histamine doesn't necessarily rule out MCAS because it can be difficult to catch the mast cells at the right time.
He said that my symptoms were that of a mast cell disorder, but that there was no evidence.
He left the exam room and came back with a totally different attitude after he saw some of my bloodwork (high complement levels, high c reactive protein and high chromogranin a) he said that my body was definitely reacting to "something". (He said in his notes that with the inflammation markers, something is going on and that it is not a psych issue. I must come off as a total wingnut! I don't know if I should be offended by that comment or glad he wrote it!)
Anyways, Normal range for chromogranin a on my labs is like 0-95 and mine was 139. But I have read that this test can be elevated from ppi's, which I do take Prilosec, so I'm not sure if this is why my chromogranin a is high or not. But it doesn't account for the other high inflammation markers.
So he said we are going to treat it as MCAS and see how it goes. But I'm confused. If I don't respond well to the meds, and it's not MCAS, than what is it? It's so frustrating and confusing. From what I've read and all my symptoms, it seems so obvious to be a mast cell problem.
He told me to continue with gastrocrom, and if it does not settle well with me, he gave a prescription for cromolyn without preservatives and a prescription for ketotifen. (Right now I have the cromolyn in the plastic viles. Do these contain preservatives?) What is the difference between cromolyn and ketotifen?
Thank you