@unicorn44 -

It sounds like your symptoms are truly unpleasant. There is a lot of controversy about MCAS diagnosis and there are two main schools of thought on this topic. While it hasn’t been updated in several years, the best website for understanding the disease and the diagnostic controversy can be found at https://www.mastattack.org/. The information presented there is thorough, balanced and technically accurate.

In 2019 the AAAAI and other mainstream societies endorsed a set of diagnostic criteria (commonly referred to as Consensus 1 criteria) which includes “typical clinical signs of severe, recurrent, acute systemic MCA are present (especially in
the form of clinical features and ndings of anaphylaxis).” (“Proposed Diagnostic Algorithm for Patients with Suspected Mast Cell Activation Syndrome”, Valent, et.al., Journal of Allergy and Clinical Immunology- In Practice, April 2019) This means that if your symptoms are not severe enough to require a trip to the emergency room, there is a low probability that you will satisfy the criteria that is currently accepted by a majority of mainstream practitioners.

The main problem with the Akin/Valent (Consensus 1) criteria is that they exclude patients with mild or moderate systemic symptoms and significantly underdiagnose the disease. The Consensus 1 authors freely admit that mast cell activation, like anaphylaxis, exists across a spectrum of severity but consider the mild and moderate forms to be ‘clinically insignificant.’ They do not offer any references or experimental evidence for this conclusion.

Most of those with moderate or mild MCAS symptoms seek out doctors that base their diagnosis and treatment on the alternative, Afrin/Molderings (Consensus 2) criteria. (I agree with @loribmt’s allergist recommendation and would suggest that your risk of gaslighting will be significantly reduced if you refrain from mentioning MCAS. If the allergist is unable to help and you are interested in investigating the possibility of MCAS, I would find someone in your area (most probably a functional medicine practitioner) who bases his diagnosis and treatment decisions on the Consensus 2 criteria.

There also a very active Reddit thread that discusses MCAS issues. It can be found at https://www.reddit.com/r/MCAS/.