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WHO HAS BEEN DIAGNOSED WITH MCAS?


[Ga...]

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Anyone been diagnosed with MCAS?  If yes, which type of doctor diagnosed you and what type of test was performed?  
Still trying to rule out anything else besides benzos that could being causing my awful headaches!   I do get rashes but my doctor said they were yeast rashes.  
Thanks for any comments!

GG

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I suppose a simple test would be to take an antihistamine or quercetin when you've got a headache, perhaps trial a DAO supplement?. It might give you an indication on whether it's an avenue worth pursueing. I quite like quercetin, seems to give me some relief. There definitely seems to be a histamine connection for many, but whether it's actual MCAS is another matter IMHO  

Edited by [Ha...]
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I do suspect it given my family history and other symptoms. Getting diagnosed is another matter. Usually, you would start with an allergist. They would check tryptase levels (not spelled right but something like that!) If you are not in an active flare though, those levels will not be elevated. So it can be tricky to get a diagnosis on that. There are some other tests that can be done. Few doctors specialize in this and the advice I've heard most often is "avoid your triggers." For me that is heat, friction, and assorted foods. Red wine has always been a trigger for me and I eliminated shell fish ages ago due to the high histamine levels. If you want to learn about it, I highly suggest "Never Bet Against Occam" by Dr. Lawrence Afrin. He is one of the only MCAS specialists in the U.S. He has been at several major hospitals, including Mayo but is now in private practice in NY I believe. If you don't want the book he also has some informative papers available on-line which detail the many areas impacted by mast cell disorders. I would also suggest keeping a journal of symptoms you have, what you ate, and anything else you feel might have contributed to your issues. The traditional treatment for MCAS is usually a Zyrtec/Zantac combo although there are other things that they do use like Singulair and assorted others. I don't react well to a lot of drugs so for now I'm just avoiding my triggers as much as possible. Best of luck, headaches are miserable for sure! Zippy

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I do find that if I take a Benadryl my headache lessens and I feel better.  My allergist does not go down the MCAS avenue, even though he specializes in both allergies and immunology.  Same thing with my GI doctor…when I mentioned SIBO he waved it off!  I am considering taking DAO as I was on Valium for a year and it seems that is the benzo that blocks histamine?!

Onward to healing we go…hohoho🙏🙂

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  • 5 months later...

Sibo had me eating the same foods for months. I was not impressed with the elimination diet. When I added powerful enzymes to eat the biofilm in my gut I saw a huge improvement. Research it. Biofilm.

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