nomellamesprincesa t1_ix6y5fy wrote on November 21, 2022 at 5:17 AM

Reply to comment by terrytapeworm in Lung infections caused by soil fungi are a problem nationwide by preppythugg

I had considered that, because I do in fact constantly have autoimmune-like symptoms that they can never find a cause for. But my doctor seemed to think MCAS was not a thing? Also anyhistamines don't seem to go much of anything for me, but maybe they're the wrong ones?

terrytapeworm t1_ix8qd7s wrote on November 21, 2022 at 4:46 PM

A lot of doctors don't think it's real because there isn't a definitive test for it. IIRC, there are possibly thousands of places on the KIT gene that can have a mutation resulting in MCAS, but they can only test for like 8 of those locations so far. Doctors also don't always consider symptoms a criteria for diagnosis, despite how severe the symptoms are.

If at all possible, I'd go to an allergist. It definitely took me several "second opinions" because I had some doctors try to tell me that I was dying because of "anxiety" and then attempt to give my treatment for fibromyalgia which obviously didn't work.

And it is possible that you could be allergic to certain antihistamines! Medication is one of the top triggers for MCAS. I myself recently switched to a compounding pharmacy to get my meds hand-made because I am allergic to so many things (and it was surprisingly cheaper than regular pharmacies). Also a lot of OTC antihistamines have dyes and gluten in them, which are top triggers. So I wouldn't totally rule it out yet, it's definitely hard to pin down.

nomellamesprincesa t1_ix8u0mh wrote on November 21, 2022 at 5:10 PM

I did get a pretty extensive allergy & asthma test recently which showed nothing wrong, would something like that show any results? I also went to an allergist years ago, he said I had an intolerance for biogenic amines, but then told me to cut out a bunch of foods that definitely aren't triggers for me. I had a bad bout of IBS at the time and there were things that clearly made it worse, but I think it was mostly stress-related, I was in an unhappy relationship and once that ended, so did the IBS. My main symptoms now are near-constant post-nasal drip that I've had since I was 18 (for which the only possible correlating factors I've found were starting birth control, but I've since switched birth control and it's made no difference what so ever, and moving to the town where I still live now), and constant relatively minor inflammation issues, like I've had a bunch of tonsil infections the past few years, some bouts of food poisoning that wouldn't go away on their own, and cold sores that got so bad I'm now on permanent meds because I kept getting eye infections etc.

But yeah, I'm keeping it on my radar just because everything else has been ruled out by now, I think. They've checked my immunology as well and found nothing odd.