Is it possible to have Mast Cell Activation Disorder and have a serum tryptase within normal limits?

Posted , 11 users are following.

I have idiopathic anaphylaxis and numerous triggers: foods, environmental, drugs, odors, etc. and my medical situation fits exactly with the symptoms of these diseases. I was told by an allergist that I have "immature mast cells" I have suffered with this for decades (now 57).

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  • Posted

    Can you elaborate what your symptoms were im starting to thonk thats what i have hopefully here in Canada they are familiar with those type of desease cant wait to go see my immunologist  and maybe get some answers
    • Posted

      Good morning,

      I have had ideopathic anaphylaxis for years. My specific triggers for anaphylaxis are: milk (all dairy), eggs, chocolate, papaya, mango, mold, insect stings, herbicides and pesticides, perfumes, sulfites, penicillen, sulfa, many opiods (given for pain), and other drugs. I also have itchy skin and small rash, like prickly heat or measles, asthma, osteoporosis, low thyroid, fatigue, body aches, foggy brain, and cardiac issues, just to name a few. It can be frustrating because of its sudden onset. some days are good, some not so good, and I have learned to rest when I need to. Some have said I must be faking or it is all in my head, but the doctors have assured me it is real. It has only been officially recognized since 2007 and there is still much research to do. Hope that helps. Best of luck to you.

    • Posted

      I seem to be allergic to all those things for me it started with rashes and itching three years ao did every allergy test and came out negative ive lowered my stress avoid scented stuff as much as i can i know perfume makes me sick im on a low histamine diet and its getting worse every year now i get itchy burning hives almost everyday for no reason that i know and im always tired.  My axiety was very high when it began so i think that brought it on but now im trying to get a diagnose and they don't take me serious but i have a allergist/ immunologist appt on the 7 th of Nov wish me luck.  

    • Posted

      My blood allergy tests came back negative for all the things that cause anaphylaxis. Tjat is when they started looking in the direction of a mast cell problem. Good luck to you.
    • Posted

      Yeah doctors here are not to helpful they just say i can' t do nothing for you and we always have to push if we want something done three years of this crap alrea

  • Posted

    Hi Gail!! I have been treated for 6 months with a 90%success. So happy. Since returning from Europe seem to have a setback. Live in NJ and looking for  a doctor..would you mind telling me your doctor's name in Case it continues. Thank you in advance. Karen

  • Posted

    Thank you gail im suppose to get the zolair injections soon can't wait to see if it will work and im also on a low histamine 

  • Posted

    The simple answer is YES!!  I have been experienceing idiopathic Anayphylaxis for 14 months, 6 X in 9 months. I have been diagnosed with Systemic Masto. My situation had gotten so unsafe that I was put on absurdly ridiculous amount of antihistimines, decreased my work load and radically changed my diet to a low histmine foods only. I had always had healthy eating habits but went purely radical!

    All of these interventions helped but it wasnt until 4 months after being put on a mast cell stabilizer that I could tackle the day with any confidence that I would not need my trusty epi pens or IV meds.

    And yes my serum tryptase has been within normal limts the entire time.

    I wish you stable health and a medical team that listens to you. You are your own best advocate.

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