u/censorkip

TLDR: Had a skin test a decade ago that confirmed a TON of allergic reactions. I recently started seeing a new allergist who blood tested me and I came back with one reaction. New allergist told me that old allergist must’ve tested wrong, my reactions are due to stress and tummy issues, and that MCAS doesn’t exist.

I recently started seeing the only allergist within an over an hour of me. I was allergy tested (skin prick) as a young teen and reacted to a majority of the allergens that they tested me for. The nurse that tested me said that I was the most reactive patient she’s ever had. This was over a decade ago. Since then I have become more and more avoidant to the outdoor allergens and I can tolerate less and less foods. I get random hives and inflammation. I started having to take pepcid daily for my heartburn. Foods I used to tolerate in small amounts are completely off the table now. In the past two years I developed severe OAS along with constant heartburn, so I decided to see the allergist again as an adult.

For context, I’ve been to a GI specialist last year and had multiple tests done including an endoscopy which showed inflammation of my stomach lining, but everything else was in order and an MRI enterogram which showed nothing wrong with my guts. GI doctor said my issues are probably just allergy related. So I go see the allergist…

I got blood tested at the new allergist and came back with one (1) allergy reaction to mold. I asked the allergist how that possibly could be when I am having severe GI reactions, hives, and whatever else. He told me that hives are often for no reason and it’s more likely I get them from stress or whatever. That makes sense enough because it really does seem a bit random for the most part. He kind of went on about it for a while to a point where I felt awkward for even asking. I also asked why I reacted to so many things on a skin test but almost nothing on the blood test and he said that my old allergist probably administered the test wrong. He said my food issues are just something wrong with my gi system that mimic allergies. I already felt the vibe of this doctor, so I worded the next question exactly like this, “I was talking to my mom and she mentioned that histamine might be something that I have issues with. Do you think that is something worth looking into?” He immediately went into a rant about how there’s a fake histamine scare going around and how people have now invented a new thing called MCAS that doesn’t exist. How none of his patients have ever had MCAS and he would never diagnose someone with it. Either they have idiopathic urticaria or idiopathic anaphylaxis, but MCAS is not real. Just like when I asked about the hives he just kept going on and on about the new fake science stuff that is going around. I never even mentioned MCAS and I’m glad I didn’t because he made me feel so awkward for even asking questions.

I am fine with not having MCAS. My symptoms are not severe enough to land me in the hospital on a regular basis (only once in my life have I had anaphylaxis). I just thought that maybe I do have an issue with histamine since all the foods I tested positive for in my previous skin test and continue to have severe reactions to are high histamine foods (garlic, wheat, yeast, tomato, coffee, citrus, banana). I do have POTS which was diagnosed via tilt table last year too. I know there’s sometimes comorbidity which made me more interested in looking into the possibility of MCAS or a histamine related issue.

I guess my question is, should I even try to look into histamine related issues at this point or just give up and hope for the best? I age out of my parents insurance in September and I don’t have a stable job, so I’m trying to get all my health stuff figured out before then. I am feeling a little lost at this point. Any guidance would be appreciated.