4 ms·

These days I just blame everything on histomine dysfunction and marvel that the medical complex has been so reluctant to pick it up.[1] [1] https://www.bda.uk.

These days I just blame everything on histomine dysfunction and marvel that the medical complex has been so reluctant to pick it up.[1] [1] https://www.bda.uk.com/resource/caution-advised-with-low-histamine-diets-for-long-covid.html https://www.bda.uk.com/resource/caution-advised-with-low-his...

Aurornis 2y ago
Histamine and MCAS have been adopted by alternative medicine as an explanation for everything, but it’s not supported by science. Dieticians like the one you linked have been coming up with theories for how everything is caused by either too much or too little histamine for years. 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.
- ksenzee 2y ago
  Yeah, it's super fun for folks who do have these diagnoses, and now have to defend them. "The autonomic neurologist who diagnosed me said..." etc.
- nprateem 2y ago
  When you get ill and what the doctors give you doesn't work you have to research for yourself. Added to that you wonder if you'll ever get better. 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.
- hollerith 2y ago
  You've convinced me that you do not have MCAS.
- unyttigfjelltol 2y ago
  I've never heard doctors worry so much I might change my diet as when I read the Wikipedia entry on histomine intolerance.[1] MCAS is one thing, maybe, but the primary diagnostic for histomine intolerance is whether symptoms improve with changes in diet. So, if the whole of TikTok changed their diets with positive results, why would that provoke derision from the medical community as opposed to curiosity? [1] https://en.m.wikipedia.org/wiki/Histamine_intolerance https://en.m.wikipedia.org/wiki/Histamine_intolerance

Aurornis 2y ago

Histamine and MCAS have been adopted by alternative medicine as an explanation for everything, but it’s not supported by science. Dieticians like the one you linked have been coming up with theories for how everything is caused by either too much or too little histamine for years. 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.

ksenzee 2y ago
Yeah, it's super fun for folks who do have these diagnoses, and now have to defend them. "The autonomic neurologist who diagnosed me said..." etc.
nprateem 2y ago
When you get ill and what the doctors give you doesn't work you have to research for yourself. Added to that you wonder if you'll ever get better. 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.
hollerith 2y ago
You've convinced me that you do not have MCAS.
unyttigfjelltol 2y ago
I've never heard doctors worry so much I might change my diet as when I read the Wikipedia entry on histomine intolerance.[1] MCAS is one thing, maybe, but the primary diagnostic for histomine intolerance is whether symptoms improve with changes in diet. So, if the whole of TikTok changed their diets with positive results, why would that provoke derision from the medical community as opposed to curiosity? [1] https://en.m.wikipedia.org/wiki/Histamine_intolerance https://en.m.wikipedia.org/wiki/Histamine_intolerance