Hi All,
I had written last time that the doctor I had seen in Vegas diagnosed Mast Cell.  He said that my last doctor was wrong and that this was the cause of my issues.....and then after testing the doctor hit the brakes.  He took a couple of tests, but none of the ones that I see are the usuals, but did do a tryptase test.  Tryptase again came out at 11, and it was 11.6 last time.  He said it's gone down so he felt okay with that.  And the compliment test came out elevated.  He said, you don't have a mast cell issue, but you have a lot of inflammation in your body.  I will keep an eye on you.  That was it.  I told him that I was sent here because of my elevated tryptase-the reference range on the test was 1-10 for normal levels.  He said I wouldn't worry about it, it's only slightly elevated.  

So, I went to a new doctor and he said that the fact that the TOTAL tryptase" was elevated is not that big of a deal, but needed to run a B-tryptase and that is the main test. Does anyone have any information on this?   So I took it and have a 35 day wait for it to get back.  He also ran the tests that I see everyone else gets, the prostagladin 2, and N-methylhistamine 24 hour urine, along with a lot of other tests.  And also did the scratch test which I didn't pass on my back, called the darrier test.  I guess it hived up he said.  Now, I have heard that you have to be having a reaction for the b-tryptase to come back elevated?? Is this true? Because I took it when I was feeling well and the doctor didn't mention anything about having a reaction in order to take the test.  So far the 24 urine came back normal.  He also mentioned a skin biopsy after we see how the other tests go.  I think this doctor is more about systemic mastocytosis, from what I'm getting and didn't mention really anything about mast cell activation.  He did say that he knows of Dr. Akin.  I always thought it was Dr. Afrin that most people go to for mcas?

So is the fact that I have a tryptase test (total) of only 11.6 mean anything if it is not a b-tryptase??  I did post this question on another site, and got a response, but I was still a bit confused by this.  Can anyone help?  Thank you.  

Maiysa

Thank you Deborah,
I think if this doctor ignores any of the symptoms and tells me I'm fine, I will have to call Dr. Castells.  I did call their office awhile back and they said they would take me after I told them a few issues.  

I understand that you don't have to have a positive tryptase level to get diagnosed as there are other factors, but my question is, is the total tryptase being elevated to almost 12 an indication?  And has anyone been told that they had to have a b-tryptase test done?  And that that this test is more accurate?  
Maiysa

Thanks Deborah,
That was my question, if the tryptase is 11, does it mean anything.  Thank you for answering.  I didn't know that Dr. Castell's was that hard to get into.  They told me a few months back that they would take me.  I should have jumped on that I guess.  But then I heard that this doctor has helped others, so I'm still hoping he can help.  But if not, then I will definitely try Dr. Castell's, but I can't travel due to going into a type of hypostolic shock.  But will see what this doctor finds.  

Thanks again Deborah.  
Maiysa