1. Community
  2. Skin and nails
  3. Mastocytosis and Mast Cell Disorders

Is it possible to have MCAS and autoimmune disease

Posted , 3 users are following.

K.kgirl1223
K.kgirl1223

I'm so lost... my allergist thinks I have mast cell activation syndrome and my rheumatologist thinks it's just my lupus.... I also get thorat swelling and anaphlatic reactions from foods and sents... rheumatologist told me that's just a allergy. I also told him I have hasimotto and celiac but he said he didn't care about that.

He ran a ch50 test to see if lupus is active but i have other autoimmune disease on top of just lupus so that test is going to prob come back positive for something.

Hives i get random, from things rubbing, from scratch. Sun everything lol.. I'm just confused on all this. I had lupus for yrs and never had this. I looked up lupus hives and mine look nothing like it.

Is it possible to have alot of autoimmune diseases and still have mast cell?

0 likes, 3 replies

3 Replies

  • Vaxxine
    Vaxxine K.kgirl1223

    Posted

    Hi KKGirl,

    MCAD and mastocytosis ARE autoimmune diseases, and often seen in tandem with Lupus, celiac, CFS, MCE, thyroid issues, EDS and POTS. Very very common. Your symptoms sound like MCAS to me - NOT Lupus reactions.

    Go to Mast Attack, a website online, and find the articles about symptoms and testing to order. You can start histamine blockers like Zantac and Zyrtec in the meantime, and if your symptoms improve, your mast cells are degranulating sks = mast cell disease. Response to blockers is one of the diagnostic criteria.

    Have your Immuno do full IgE-mediated allergy testing (like ELISA and RAST etc) to rule out actual allergic reactions, and run tests for blood tryptase and 24 hour urine methyl-histamine. If those come back elevated ... BAM, mast cell diagnosis.

    Hope you find some relief from your symptoms soon. Benadryl should help, as well as starting a low histamine, low salicylate OR elimination diet to determine your triggers.

     

    • K.kgirl1223
      K.kgirl1223 Vaxxine

      Posted

      Thanks. I just switched allergist.

      He's not convinced it's mast cell..

      He is having me take Allegra,zantac and hydroxazynee but he said I just have dermopragihsam

      He wasn't listening to me very well about foods and sents..

      I started flushing in office and major brain fog..

      I asked him what causes flushing he said mast.cell..

  • michelle43974
    michelle43974 K.kgirl1223

    Posted

    Many autoimmune disease are coexisting conditions of mast cell disease, but mast cell diseases are not autoimmune diseases themselves. Here is a great explanation from Lisa at MastAttack:

    Mast cell diseases are not autoimmune diseases. Mast cell diseases are not directly their attacks to a normal, healthy part of the body. In mast cell disease, mast cells are dysregulated and behave inappropriately. While this can damage parts of the body, this damage occurs due to the general inflammatory environment rather than because mast cells specifically targeted those parts of the body.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.