Something does sound fishy here. Dr Metcalfe has been involved with mastocytosis research for decades, but the NIH is known to to NOT recognize and treat MCAS.
Jewels, just because you are not facing full blown near to death variety of anaphlaxis, doesn't mean you're not facing anaphylaxis. There are four different stages, as listed in this emergency trifold from the TMS:
http://www.tmsforacure.org/documents/TMSERBrochure.pdfAnaphylaxis Severity
Anaphylaxis symptoms can occur on a continuum:
Grade I: Cutaneous signs such as hives or rash.
Grade II: Cutaneous signs, and hypotension, tachycardia, presyncope, dyspnea or GI distress.
Grade III: Profound hypotension, bradycardia or tachycardia, cardiovascular collapse, confusion, bronchospasm, hypoxia (SaO2 <92) and GI distress
Grade IV: Pulseless electrical activity (PEA) or cardiac arrest.
Dr Afrin told me that Epi is only helpful if I have angioedema/swelling in the throat/difficulty breathing that continues despite taking my other emergency meds. I have had throat swelling about 10 times, and IV Benedryl pulled me out of it, only had epi once (given to me during delayed alergy skin reaction after explosive symptoms came out of nowhere). A different time, a paramedic did not give me Epi, even though I was in "full blown" anaphylaxis, as Benedryl brought me out of it. That line of thinking isn't true. I tend to get really low BP and face syncope/presyncope as my most severe common reaction, which falls under late Grade II/early grade III. Epi doesn't help the really low BP, but dye free Benedryl liquid gels sure do help me.
Years ago, an allergist told me that I should always be prepared as the next time could take less than 1/2 the time to progress.
Did you find that doc on this forum? I suggest finding a recognized mast cell specialist who understands MCAS. They will rule out SM first. Asthma, allergies and IC are all mast cell related, so it is not a stretch here.
Best wishes in finding answers.
Lyn