Anyone never get a diagnosis?

The way my food condition works is that every food I consume pretty much ever in the last 12 or so years eventually leads to throat swelling if I have it enough times. Most drinks do it too. Even some bottles of water cause (milder) symptoms. Vitamins, supplements, medications by mouth all do it too. I also react to most housing situations with carpets or dust or other chemicals in the air and most clothing types as well. I've had a really hard time surviving. I got a little heavier in the last couple years and returned to exercise (due to luck...?) but before that I was battling hypoglycemia daily and very underweight and almost died during that period and that period lasted a couple of years. I had a slew of testing and nothing conclusive was ever found.

Some tests:
IgE testing
immunoglobulin testing
complement testing
skin prick testing
urine histamine
urine prostaglandin metabolites
serum tryptase
serum PGD-2
flow cytometry
Ckit mutation
colonoscopy with biopsy and cd25 staining
Genova Dx Stool profiles

tests that were positive:
mold allergy on skin prick testing
randomly had 3x normal serum PGD-2 (not during a reaction I don't think)
Stool profile showed 10x normal fecal secretory IgA
tryptase went from 3.2 to 5.1 during a reaction (below gold standard cutoff)
colonoscopy biopsy had 25 mast cells per hpf near already inflamed rectal tissue

So basically doesn't meet criteria for food allergies or mast cell activating syndrome. I stilll received the latter diagnosis by exclusion but the testing wasn't exactly a home run... I think the medications when I take them make reactions take longer to become severe, but they don't stop them from happening and worsening.

It's been a rough ride. I really just want to be able to eat and date and live life...

Many doctors were dismissive too, saying I'm having panic attacks when I eat or others saying I have very hypersensitive nerve endings in my GI tract. The thing is, when I eat something I don't react to, I don't really have any symptoms at all. Then eating something I do react to, the reaction will start right when I'm chewing on the food, like a food allergy.

Peas, carrots, avocados, eggs, rice, turkey, pork, cherries, beans, nuts... I haven't been able to ever return to eating these really without bad reactions rapidly developing. It's quite hard to eat healthy too because of this syndrome.

I really want answers and help. I feel like I cannot have that and it kind of makes me feel helpless and has for a long time now...

Posted Aug 4, 2026, 8:52 AM UTC

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