Getting so close to a diagnosis

We’ve basically narrowed what’s wrong with me down to MCAS or something similar. My rheumatology screening came back totally fine, and every GI test we have done thus far has been golden. All my doctors (GI, Gyne, Psych) are leaning toward something immunological and systematic. It makes sense. I’m seeing improvement with antihistamines and limiting histamine in my diet. But I am so scared to see the allergist in a few weeks. I’m so used to doctors telling me it’s nothing and telling me it’s just anxiety that I don’t trust myself. I recently went through some serious medical trauma that led me to get an all new care team. They are great and have been on the same page with me, but my trust has been broken again and again. I just want to start feeling better and learn how to care for my body. In the last month I’ve started having random anaphylaxis to things that I’ve never reacted to strongly before. It’s terrifying. For now, until I can see the allergist, I’m eating low histamine and being very careful about triggers. I don’t want to go back to the hospital for anaphylaxis. I can’t do more prednisone.

Posted May 15, 2025, 4:38 PM UTC

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