misstraci Posted August 31, 2012 Report Share Posted August 31, 2012 My PCP sent me to an allergist here locally who agreed to test for MCAS even though she said she highly doubts that is what I have (love it when people doubt things right off the bat and they have no clue about you or your body). Anyways, she ordered just a tryptase blood test which i need to go do later today. My question is this, will this be a significant test to test for MCAS? because I was under the impression it was not an easy thing to test for and in addition, if I'm not in the middle of a cluster of bad symtopms (possibly indicating something flairing in my body) could the test come back as normal because in that moment I was not symptomatic?thanks for any information you may have. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted August 31, 2012 Report Share Posted August 31, 2012 You basically need to be in the middle of an attack or within a half hour to and hour of one for tryptase to be levated in MCAS (according to the new literature). If you can wait to get the blood drawn while having an attack (easier said than done), that would probably be best in my opinion. There are a bunch of other blood tests they can do, if your doc is open to it, this is a great publication by Dr. Afrin to print and have with you: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/Best of luck!Claire Quote Link to comment Share on other sites More sharing options...
Chaos Posted August 31, 2012 Report Share Posted August 31, 2012 From what I've been reading from Dr. Afrin and other MCAS specialists, tryptase is NOT usually elevated with MCAS. It is elevated in systemic mastocytosis, but not usually with MCAS. From my experience, most allergists are familiar with Mastocytosis but are clueless about MCAS.The markers for MCAS are frequently very hard to catch, so it would be best if you can get the tests run when you are symptomatic.Good luck! Quote Link to comment Share on other sites More sharing options...
misstraci Posted August 31, 2012 Author Report Share Posted August 31, 2012 Thanks Claire and Chaos! That sounds about right. AND, I just got back and normally I never have to pay for blood work but i had to pay for this test, like it is all special or something, I was fussing to myself on the way out, saying this stinkin test better come back positive. I hate wasting time, money, and effort on things that don't work out I will look at that article by Dr. Afrin, seems like he is the man to see!!! Quote Link to comment Share on other sites More sharing options...
Christy_D Posted August 31, 2012 Report Share Posted August 31, 2012 My son's tryptase was normal, but he was diagnosed by Dr Afrin with MCAS. It is not a good test to rule out MCAS. I think Dr Afrin is the man to see. He is so knowledgeable. You could email him directly with questions and he will email you back answering them.(ie-regarding testing,etc.) Quote Link to comment Share on other sites More sharing options...
Frugalmama Posted September 1, 2012 Report Share Posted September 1, 2012 Tryptase is a bit of a tricky thing . Mine has been recorded once at 13 and twice at 11 (the normal range used by our labs is up to and including 12) and I was diganosed last month with systemic mastocytosis via DNA test and a bone marrow biopsy. The hemotologist and the pathologist were shocked, as was I, as I was under the impression that tryptase had to be over 20 for systemic masto to be possible. Turns out it is Quote Link to comment Share on other sites More sharing options...
misstraci Posted September 6, 2012 Author Report Share Posted September 6, 2012 My test came back "normal", I didn't get specific numbers but she left a voicemail to say it was normal. I know I'm not the only one who wishes some test ANY test would come back with some answers. I get so discouraged. Although, of course, relieved that things are normal but I just want something so bad to show a reason for why I feel terribly :/ Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted September 6, 2012 Report Share Posted September 6, 2012 Misstraci:I know the feeling! We keep hoping that at least one test will come back "abnormal" so the doctors will take it seriously. We think that my daughter is suffering from a mast cell disorder. She also had a normal tryptase test but people have said that it can still be a mast cell disorder, evern with a normal tryptase. So we will keep pushing until we find an answer.Wishing you all the best,Pam Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted September 7, 2012 Report Share Posted September 7, 2012 I have had Mast Cell Activation Disorder my whole life, and I have never had one elevated tryptase. I know a lot of MCAD people who have never had an elevated tryptase. It is one of the worthy markers, but it is not the one deciding test. That's why there are so many other tests that can and should be done.I agree that Dr. Afrin is the one to see if you're going to see a mast cell expert. I've seen so many of them: Butterfield, Castells, Greenberger, Akin, worked with Weiler by phone, and talked with Dr. Afrin. To me, he's the one to see. Take care. Best wishes.Linda Quote Link to comment Share on other sites More sharing options...
misstraci Posted September 7, 2012 Author Report Share Posted September 7, 2012 Thanks Pam and Linda, your kind words give me hope! Just like always when I come on here.I'm not certain mast cell is what I have, but I thought It was worth the digging to see if maybe just maybe.....Thanks Quote Link to comment Share on other sites More sharing options...
Elenapap11 Posted September 7, 2012 Report Share Posted September 7, 2012 Two days ago i booked an appointment with an allergy doctor and she asked me if i have ever done a tryptase blood test.I didn't even know what that was until she mentioned it but she suggested that i do it.Anyway the appointment is next Friday so i'll have to wait for further details.My GP said that i might have mastocytosis because my allergy symptoms are getting worse for no apparent reason.I see that lots of people have done this test and also biopsy for mastocytosis.Is the biopsy very painful?i haven't done it before.By the way,how different is mast cell disease from mastocytosis? Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted September 7, 2012 Report Share Posted September 7, 2012 Honestly, Elena, Mast cell activation disorder / syndrome and mastocytosis are a lot alike. They have the same symptoms, same treatments (mostly) same triggers.There are some differences. Mastocystosis means you have too many mast cells. This can lead to a type of mast cell leukemia, but this is considered rare and is not considered to be a consideration in MCAD (for right now). With MCAD, you have normal mast cells numbers, but they are twitchy and dump a lot. It is said that with MCAD, you can be assured that, with proper treatment and avoidance of triggers, you can live a normal life-span, but, as with all things medical, they may find that to be different with further research, but so far so good.Hope this helps.Linda Quote Link to comment Share on other sites More sharing options...
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