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837d

What is the one (or two) thing you've found that has helped you the most with your symptoms?

Top reply
    • PinkCrow

      807d

      Not the OP but I went from a “fish allergy” diagnosis to eating most fish again when I got on meds and made sure my fish was relatively fresh. Apparently spoiling fish can have a TON of histamine— to the point where even when it’s still safe to eat for most people, folks like us MCAS buddies will react. I had a strong reaction (hives, nausea, weird taste in my mouth) immediately after eating tilapia one time, but my whole family was fine eating the same fish. It was in the fridge a few days before cooking, but not to the point where it looked “bad.” (When the fish gets spoiled enough that even non-mast-cell-disorder people are affected, I think they call it histamine food poisoning 😳) I have yet to have a problem with any fresh fish. I still avoid tilapia but I sometimes wonder if I could handle it. I’m reading that mackerel/herring/sardines/tuna are typical high histamine culprits, but I’ve had fresh tuna recently no problem. tldr is I guess your mileage may vary, but the freshness of the fish seems to make a huge difference for me!

    • PinkCrow

      807d

      Not the OP but I went from a “fish allergy” diagnosis to eating most fish again when I got on meds and made sure my fish was relatively fresh. Apparently spoiling fish can have a TON of histamine— to the point where even when it’s still safe to eat for most people, folks like us MCAS buddies will react. I had a strong reaction (hives, nausea, weird taste in my mouth) immediately after eating tilapia one time, but my whole family was fine eating the same fish. It was in the fridge a few days before cooking, but not to the point where it looked “bad.” (When the fish gets spoiled enough that even non-mast-cell-disorder people are affected, I think they call it histamine food poisoning 😳) I have yet to have a problem with any fresh fish. I still avoid tilapia but I sometimes wonder if I could handle it. I’m reading that mackerel/herring/sardines/tuna are typical high histamine culprits, but I’ve had fresh tuna recently no problem. tldr is I guess your mileage may vary, but the freshness of the fish seems to make a huge difference for me!

    • Celi

      823d

      For food reactions, cromolyn and a low histamine diet, with a lot of trial and error and journalling. But otherwise, it's a little hard to say, because I take so many medications. My inhaler helps with my MCAS-induced asthma the most.

    • PinkCrow

      823d

      Cromolyn sodium liquid was the biggest game changer for me. Went from very few safe foods to a relatively “normal” diet again a few months after starting it. I’ve heard good things about the low histamine route also.

    • Hypochondriac

      835d

      I adopted a low histamine diet. Started to eat things like fresh meat and fish, eggs, gluten free and stopped eating citrus fruits which contain histmaine

      • GFAF

        809d

        @Hypochondriac What fish can you eat? I read so much conflicting information about this! Also conflicting info about egg whites.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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