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Anyone familiar with MAST cell activation syndrome?
Autoimmune Diseases | Last Active: Jun 28, 2025 | Replies (15)Comment receiving replies
MCAS symptoms are very similar to a ton of other things.
To be diagnosed with MCAS they are going to want to test for the KIT gene and get those elevated Tryptase levels. Without those a diagnosis of MCAS generally isnt made. Also know its not uncommon for MCAS and EDS, connective tissue , or other autoimmune disorders to go hand in hand.
My understanding is Mayo Rochester sees for Mastocytosis , but not Mast Cell activation. Finding care can be difficult . An allergist or immunologist is a good place to begin.
I am a retired nurse who is diagnosed with this myself and has met the criteria for that with the genetic testing and tryptase levels. Management is a lot of avoiding triggers , lifestyle changes etc..
Good luck , I hope you find your answers!
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I was born with migranes (as my Father and his Mother before him) and in the 50s my Mother decided to take me to drs to get to bottem of them. She didn't have headaches and thought they were a coping mechanism. Many docs later I was at an allergist and after all the diets, blister skin tests he decided that I had an histamine sensitity triggered by a corn allergy and Proved it by giving me a shot of histamine designed for my body weight. I was to get a headache he said. In about 2 minutes, I passed out and woke up with a torniquit on. The treatment was to give me ever increasing histamine shots (3 a week) for the summer. Did help until I got my hormone change, and then I had another reason to have migranes. They seem to be influenced by estrogen levels. It wasn't until HRT that I got a handle on them. I really wonder what todays docs would make of it.