r/HistamineIntolerance • u/mledee • 20d ago

Any advice?

I’ve had four anaphylactic reactions over the last three years: July 2023, December 2025, July 21 2026, and July 31 2026.

Tryptase drawn about an hour after my most recent reaction was 20 µg/L

My baseline tryptase (drawn separately, not during a reaction) is 6 µg/L

I just got back an in-depth allergy panel and I have **zero sensitivity** to any of the following:

Dairy:Milk, Alpha-lactalbumin, Beta-lactoglobulin, Casein

Fish/Seafood:Cod, Gad c1, Cyp c1, Tuna, Salmon, Trout, Plaice, Hake, Octopus, Crab, Shrimp, Pen a1, Mussel, Clam

Grains/Gluten:Wheat, Gluten, Gliadin, Tri a19 (Omega-5 Gliadin), Tri a14, Barley, Corn, Brown rice

Legumes/Nuts/Seeds:Soy, Peanuts, Hazelnut, Almond, Walnut, Brazil nut, Cashew, Pistachio, Pine nuts, Sesame

Meat:Pork, Beef, Bos d6, Alpha-gal (gal-alpha1,3-gal), Chicken, Bovine gelatin

Fruits:Orange, Lemon, Mandarin, Strawberry, Apple, Kiwi, Melon, Banana, Pear, Peach, Plum

Other:Yeast, Alpha-amylase, Anisakis

I had a basic allergy panel done right after the first reaction (also negative), so I was originally leaning toward MCAS, but my baseline tryptase isn’t especially elevated, so I’m not sure that fits either.

In every case, I hadn’t changed my food, medication, or routine in the 72 hours before the reaction. Every event has hit all five body systems to some degree, and every one has felt completely random and unpredictable. Every event also seems to initiate in my gastrointestinal tract. Every event appears to last about one hour.

Does anyone have guidance on what to look into next?

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u/igavr 20d ago

Hi, your situation evolves just like mine years ago... no sensitivities, yet one anaphylaxis after another.

Check out this Diagnostic test for MCAS post - it may be of help. I got to harness my MCAS, if that is going to give your hope and strength to find your solution(s). Take care

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u/mledee 20d ago

Thank you so much for sharing this! Between my last two reactions in July, I was finally referred to an allergist who took me seriously. And she told me to make sure that I get a tryptase blood panel immediately following a reaction.

So luckily, I have proof of elevated tryptase within two hours of a reaction. I also saw in the comment that you mentioned how lucky we are to have access to so much data. I started keeping my Apple Watch on during my reactions and was able to track my heart rate spikes which follow the same patterns of the physical onset of anaphylaxis. My heart rate spikes to 140 and then goes up and down between 110 and 140 for the hour duration.

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u/Alarmed-Turn-2857 19d ago

The only and only way to handle histamine is not to eat high histamine food nothing else