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Mast Cell Activation Syndrome: What treatments help you?
Blood Cancers & Disorders | Last Active: Mar 18 7:20pm | Replies (30)Comment receiving replies
rhawk, I was diagnosed with cutaneous masto almost 40 years ago. I am Case #138 ever identified in the US. I am now self-diagnosed with MCAS and had positive results with DAO Enzyme. Unfortunately, recently I've lapsed back into multiple episodes of diarrhea every day despite eating a much lower histamine diet after educating myself and taking 8 capsules of DAO every day (2 capsules, 4 x/day).
How did you get diagnosed with MCAS? I'd be delighted to be wrong about myself. Of course, I'd be even happier to get this under control. My H1 Blocker and H2 Blocker were all I needed to keep my cutaneous masto under control--for decades.
Struggling and searching!
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I'm still not dx'd. I was traumatized by my experience with medical professionals during my first serious episode, so I wasn't motivated to find help (more like advoidant) during my second post-covid. After 18+ months with my first episode, I found two books on Histamine Intolerance and MCAS (Never bet against Occam by Lawrence B. Afrin M.D), and managed to recover over a 6 month period.
I still have chest tightness and breathing difficulties (pre-covid, but covid was no help), so starting to look now. I noticed that many of the MCAS medications are used for Asthma and many MCAS patients report similar issues. Perhaps it's time to connect with a specialist.