gertie Posted May 13, 2014 Report Share Posted May 13, 2014 I have suspected for a long time I might have MCAD since I am allergic to everything. I had an appointment to have blood drawn today for a serum tryptase test. I usually react to everything & everyone I come in contact with + everything I eat. I found it strange that today nothing bothered me. I didn't itch, burn, freeze, throat & mouth burn, didn't feel faint. I was almost tempted to take an aspirin so I would be having an allergic reaction to something when I had the test done. I know that's silly, but I'm sure the test will be normal because I felt fine other than a little balance problem. Did any of your tests come back normal even tho you have MCAD? Thanks. Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 13, 2014 Report Share Posted May 13, 2014 Mine did. But my immunologist gave the diagnosis based on clinical signs and symptoms, IgE testing that showed negative results to things I'm clearly allergic to, etc.. if you read up on mcas, most of the big wig docs say that it's not easy to catch a blood test that shows a high tryptase unless you can get to a lab during or immediately after a reaction. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted May 13, 2014 Report Share Posted May 13, 2014 My son's serum tryptase test came back fine, but his heparin levels and PGD2 levels were both high. Like Katybug said, it is hard to catch high tryptase. So, based on symptoms and the high levels of PGD2/heparin, plus the dermographic test done on my son's back, he was given the diagnosis of MCAS. Quote Link to comment Share on other sites More sharing options...
gertie Posted May 13, 2014 Author Report Share Posted May 13, 2014 Thanks for your replies. I felt I should at least try to find out if I have MCAD. My internist was willing to do the test but I don't think he had ever heard of it until I mentioned it. He had to look it up before knowing what test to have done. I'm sure it was a waste of my time & money. That is as far as I will ever get in finding out if I might have it. When I was going to the hospital ER with reactions to meds & foods was years before I ever heard of MCAD & I'm sad to say things haven't changed much here. Quote Link to comment Share on other sites More sharing options...
Chaos Posted May 13, 2014 Report Share Posted May 13, 2014 So frustrating how it always works that you can't get the tests when you're symptomatic. Sorry!I've been walking around with a lab slip in my purse for 18 months to have some of these tests run. Unfortunately they can only be done M-Th during certain hours. I always seem to react in the evenings and on weekends. Or, when I'm reacting I feel too bad to go to the lab. Or, I've been too brain dead to remember i had a lab slip in my purse for the tests, Or........Have you tried treating for MCAD even without the testing Alicia? My POTS specialist has done that because of how difficult it is to get the tests to catch the elevated levels. Quote Link to comment Share on other sites More sharing options...
gertie Posted May 13, 2014 Author Report Share Posted May 13, 2014 Chaos, I've tried taking antihistamines but I had partial seizure from them so I've given up. When the tryptase test comes back normal my internist will just assume everything is ok & that will be the end of that. I wish there was some way you could get an accurate test without a bad reaction. I almost laugh when I think that I felt the best I have felt in a few weeks & now that the test is over I will be reactive to everything again. Quote Link to comment Share on other sites More sharing options...
Gemma Posted May 14, 2014 Report Share Posted May 14, 2014 My tryptase test shows normal also, but there is suspicion for MCAS. My doctor gave me a slip to drown blood when I am in a flare. He said if its after hours I should go to ER to do it. He even wrote what tube they need to use and that it is supposed to be frozen immediately. Also, he told me to take zyrtec 10 mg two times a day and zantac 150. He said for MCAS i need to take both because one is H1 blocker and the other one is H2 blocker. Quote Link to comment Share on other sites More sharing options...
gertie Posted May 15, 2014 Author Report Share Posted May 15, 2014 Thanks Gemma, I have given up trying to take antihistamines. The partial seizures they trigger are worse than the other symptoms. I will speak to my doctor about a slip to use for blood test when having a flare. There is usually not a day that goes by I don't have a flare from something, that is unless I am having a tryptase test that day. LOL! Quote Link to comment Share on other sites More sharing options...
Gemma Posted May 15, 2014 Report Share Posted May 15, 2014 I think my doc also added histamine and something else to that test. I have to look it up. I still didnt do it, but have it just in case. Quote Link to comment Share on other sites More sharing options...
gertie Posted May 15, 2014 Author Report Share Posted May 15, 2014 I also asked for a histamine level test but my internist said their office didn't do that test. I'm limited in what I can have done since no doc in my area. thanks for reply. Quote Link to comment Share on other sites More sharing options...
Gemma Posted May 16, 2014 Report Share Posted May 16, 2014 I actually saw a local hematologist for it, he knew more then immunologist about it, or at least thats how it looked. I also, send email to Dr. Afrin in SC. He is not taking new patients at this point, but he is very good with communicating over email. He emailed me an article which tells how to diagnose MCAS. Also, he is willing to talk to local doctor who will be able to perform tests and will advise your doctor which tests need to be done. Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted May 17, 2014 Report Share Posted May 17, 2014 Alicia, you might find it helpful to implement the recommended diet on the Canadian Mastocytosis web site or another low histamine diet and see if it benefits you in any way especially since you are not able to tolerate the histamine blockers even if a MCAD treatment plan is recommended for you. I recently started taking a MCAD cocktail that was prescribed by my POTS specialist ( Pepside, Allegra and Cromolyn ) but also implemented the above referenced diet and am realizing some amazing improvements in some of my symptoms. I plan to try and one by one reintroduce some of the foods back that I especially miss and see what happens. Basically this is an extreme elimination diet but one that I think will be well worth it in the end. I do realize you are wanting to receive a diagnosis first but for many that can be illusive and as Chaos has pointed out there are POTS specialists now that will prescribe MCAD meds in spite of negative testing if they are fairly convinced that there are mast cell issues involved. There are articles out there supporting this approach because of the significant number of individuals that test negative but have a history and symptoms that would support a MCAD diagnosis. Janet Quote Link to comment Share on other sites More sharing options...
issie Posted May 18, 2014 Report Share Posted May 18, 2014 Yeah, Dr. G and Dr. Lewis got really tired of me insisting they start treating us if there seemed to be an issue. Most of us when in a flare are just too sick to get to the hospital to get the scientific proof. Im glad all my books of copied info made a difference. Poor Dr. Lewis, read it all too. I was really impressed with him. He was very open minded. And didnt just brush it off. He had sticky notes all through it. Treatment for this has been one of my best things.Issie Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted May 18, 2014 Report Share Posted May 18, 2014 Issie, thank you so much for your persistence. It paved the way for others of us who have benefited so much from this more open approach to treatment. I really appreciate all your effort. Janet Quote Link to comment Share on other sites More sharing options...
issie Posted May 18, 2014 Report Share Posted May 18, 2014 Glad it's making a difference.Issie Quote Link to comment Share on other sites More sharing options...
gertie Posted May 19, 2014 Author Report Share Posted May 19, 2014 Thanks everyone for your help. I've been on low histamine diet for a long time. There are very few foods that I do not react to so my diet is limited. Occ I can eat a bite or two of a food that I am allergic to without a problem. It's not only food but I seem to be sensitive to everything, that's why I am so surprised I made it through the dr's office & hospital lab & did not have one reaction to anything. Quote Link to comment Share on other sites More sharing options...
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