MCAS is particularly over diagnosed right now. The number of patients who think they have MCAS based on TikTok and Internet forums is so bad that most doctors have no choice but to assume it’s not a real diagnosis unless the patient has actually supporting test results in their file. Usually when you ask an “MCAS” patient how they were diagnosed, you get a long story about how their vague symptoms can be explained by MCAS according to something they saw on the internet.
The saddest part of the internet MCAS phenomenon is all of the people on Reddit and TikTok who have been convinced they have MCAS and can’t understand why all of the antihistamines and mast cell stabilizers and special diets aren’t fixing their problems. The fact that they probably don’t have MCAS and histamine doesn’t explain their symptoms just can be accepted after they’ve become immersed in online MCAS communities.
My own research was the only way I got clear of an illness I had after what the doctors gave me didn't work.
It's easy to feel like stupid people are falling for reddit bullshit (and if course some are), but reddit is a potentially huge sample of empirical reports. Even if their reasoning is wrong it doesn't always mean they csn't find cures. That's how we got most medicines in history anyway.
Secondly reddit etc are full of highly motivated, desperate people. You might become one yourself one day too. The saddest part is their illness, not their trying to do something about it.
[1] https://www.bda.uk.com/resource/caution-advised-with-low-his...