I've tested negative for MCAS and my allergist can't figure out whats wrong with me
I've had food and environmental sensitivities since 2018. I need Epi if I have brewer's yeast; I have hives/mouth itching if I have coconut/pinapple. My upper throat/nasal area swells horribly if I am exposed to marijuana or certain fragrances. I still used to eat plenty of other high-histamine foods like kimchi, soy sauce, distilled liquor, etc. My IgE has always been negative for any allergies despite having reactions. I have been told I have nonallergic rhinitis and food sensitivities to explain this phenomenon, but it just feels incomplete. I have been on Ipratropium Bromide spray for a little while and don't know if it's doing anything.
I started exhibiting issues with intolerance to other higher-histamine items/liberators last year, around the time that I developed Sjögren's disease, but possibly coinciding with some stomach issues. I ate low-H for a while and seemed to gain many foods back. My stomach got hit with something I ate that it didn't like again around April, and I haven't been able to eat much/somewhat strict low-H diet since. The stomach issues at that time resolved somewhat by starting DAO again, so I wonder if that's a clue as to what could be going on.
I have been tested for MCAS twice now, and nothing. I often question if everything was exhausted, but on my second allergist/immunologist now, so I'm running out of opinions/tests. This recent one did various histamine tests too, including a 24-hour urine, and nothing. Super low-h, actually, given my DAO and quercetin usage, probably. I am on Allegra and Pepcid 2x daily, azelastine, and Flonase, and all seem to only help a little.
What is the likelihood that I'm still dealing with something like HI? Any chance it could still be MCAS? How do you all tell the two apart? I see them used a lot interchangeably on here. I am waiting on SIBO results to see if that could be a factor and want to work on possible leaky gut since it seems my stomach could be a trigger. I have also lost a lot of weight, and we can't figure out why, aside from a slight decrease in intake due to dietary restrictions.
I'm still reacting when I eat histamine foods. I.e. never had issues with nuts; tried a rice crispy with trace peanuts the other day and got 2 hives, an uncommon symptom from a food I've eaten in years past. My other common symptoms include flushing, itching, shortness of breath, throat discomfort, dysautonomia, etc. Some symptoms cross over with Sjögren's, making this even more difficult to discern. Any thoughts on my situation or similar situations are appreciated as I don't even know what problem I have for sure or how to approach it atp.
