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Mast Cell Disorders, DAO & Food Trigger Testing

While I have no trouble writing about my emotions in relation to treatments or life with chronic illness, telling you the details of my treatment makes me self-conscious of talking about myself. Here’s an update for those of you who are curious about my mast cell disorder exploration, success with the digestive enzyme diamine oxidase, and sorting of food triggers.

Mast Cell Disorders
The mast cell specialist was kind and knowledgeable. He did a full mast cell disorder-related work up (including the fourth time in a month that I had to do a 24-hour urine collection) and a bunch of food allergy tests. Everything looked great. No mast cell disorder and all negative responses to food allergies.

Mast cell disorders aren’t too well understood, so there could be other markers to test for eventually, but I’m not concerned. When I add up the results of those tests, my symptoms, the genetic testing that showed DAO-related mutations, and my great response to DAO, I’m pretty well convinced there’s no mast cell disorder here. For which I am very grateful.

Diamine Oxidase (DAO)
Sunday marked eight weeks since I started taking the digestive enzyme DAO with every meal and I’m still doing really well with it. I use the Histamine Block
brand most often, but occasionally supplement with Histame, which has a lower dose in each capsule, for drinks or snacks. I get heartburn if I don’t eat enough calories or drink enough water when I take DAO, but that’s easy to remedy. Other than the thrill of finding something that keeps me from having a migraine every single day(!), there’s not much to tell.

Food Testing
Unfortunately, I still have migraines most days while I continue to test (and react to) foods and sort out what my other non-histamine-related food sensitivities are. As soon as I recover from one migraine, I jump back into testing foods, which frequently triggers another migraine. Testing foods seems like it would be straightforward, but it’s extraordinarily complicated. There’s the food itself, but the build up of certain naturally occurring food chemicals, types of food, and even quantity also figure into the equation. I will spare you the boring details (which my poor, sweet husband has had to listen to for months). It’s messy and confusing, but I’m making progress. I’ve never been so excited to eat kale, cauliflower or zucchini and I’m over the moon that decaf coffee doesn’t appear to be triggering migraines or other headaches.

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7 Responses to Mast Cell Disorders, DAO & Food Trigger Testing

  1. Larissa says:

    yay for decaf coffee not triggering things for you! I am dearly missing black tea right now on the low histamine diet . . .

  2. Larissa says:

    hopefully! : )

  3. Aanda says:

    I was a 15 year migraine sufferer, and around this time last year, ended up cutting gluten from my diet. I no longer suffer from migraines (unless I accidentally gluten myself; which I “lovingly” call my gluten hangover). I never realized that I might be sensitive to gluten, and my life has been forever changed since removing it from my daily consumption. Good luck to you during the process!

  4. Michelle J says:

    Thanks for the info! I just bought Histamine Block and will be looking forward to testing it out. I’ve just started the SCD diet (which aims to help heal the gut and immune problems, and migraines are considered by many to be an autoimmune disorder). No migraine on the new diet yet, but I’ve had several regular headaches that lasted for days and were accompanied by sinus issues, fatigue, and sharp neck pain (all migraine symptoms for me). One was due to a homemade low sugar dessert using cocoa and another was due to ONE cup of decaf coffee. Can’t wait to test out the Histamine Block!

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