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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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17 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!

  5. KC says:

    I noticed you still have daily headaches. So sorry to hear that. At you familiar with Dr morter and his series, “how to eat” how to drink, …think,…breathe, etc ? A holistic practitioner had it on CD. The part that’s always stuck with me was migraines. I don’t get them, so no personal experience but it was tied to the thinking CD. Just throwing it out there. If you can’t find it and are interested email me. I think I made a copy.

  6. Cathy D says:

    I’ve had a non-stop daily headache for over 3 years now and have tried numerous things, and saw your thread about DAO and will give that a try next (I have it ordered). I’ve seen my family doctor, 3 different neurologist, 3 different chiropractors, a neck/spine doctor, pain doctors, tried NUCCA, Arrosti, various exercise types (exercise seems to make my headache worse), gluten free for awhile, and I don’t remember what all else. I’ve tried numerous meds from my neurologist that I quit, and have had my 4th botox, which only partially helps and I would like to quit doing and find another answer. Hoping that this one will be of help to try and get some relief. Any days of no headache would be a blessing.

    • Cathy, I’m sorry you’ve been struggling so much. I hope the DAO helps you, but hang in there even if it doesn’t. It can take a while to find an effective treatment, but it’s far from impossible.

      Take care,
      Kerrie

  7. Molly says:

    I have MAOD and just read about the Histamine Block. I currently take Histame…so very thankful to find a cheaper alternative:-)

  8. Molly says:

    I meant to type MCAD– mast cell activation disorder.

  9. Kim Blackler says:

    Hello,
    I have suffered with migraines for over 30 years. They have gotten progressively worse and more frequent as the years go by. I know they are histamine headaches. I have narrowed my food triggers down to wheat, yeast, molds, artificial colors, preservatives, artificial flavors, and aged foods. This list very closely follows your list of histamine triggers. For the first time I reacted to a banana last week. My list just seems to keep growing. I am very excited to try the Histamine blocker to see what the results might be. It’s nice to know that I am not totally crazy and that somewhere out there other people can relate to this chronic migraine merry-go-round! I will let you know my results! Kim

  10. Meghan says:

    So glad I came across this. I have been getting the worst migraines when eating certain food. Seems like foods that have artificial preservatives. My dr had prescribed me migraine medication which didn’t help. I told her it was food related and she looked at me like I had two heads. Having to figure all this out on my own.

  11. Michelle says:

    there is some evidence that migraine is greatly influenced by the sodium-potassium balance in the body. Neurons generate voltage through charge developed by the passing of sodium and potassium ions through the cell membrane via the sodium-potassium pumps (check this out on youtube there are animated videos). When the charge builds sufficiently the neuron can “fire” and release neurotransmitters in to the synapse. When the pumps fail, because of disequilibrium in the sodium and potassium balance no firing. And this condition can affect more than one neuron, and this is the essence of cortical spreading depression as I understand it, more and more neurons going “offline”. So the reason food triggers are difficult, is that it is the combination of the foods and the accompanying salt intake with the foods. too much potassium rich foods and not enough salt….bad. Overload of salt with not enough potassium, bad. SUGARS/simple carbs bad, bad, bad as these quickly sweep the electrolytes out whack. There is also definitely a link to the mast cells co-located with the neurons. Do the mast cells degranulate in response to the neuron freezing? Do the mast cells degranulate first due to allergic reaction and this some how affects the sodium/potassium pumps? don’t know. But many migraine sufferers report relief with alka-seltzer gold or regular alka-seltzer which contains potassium & sodium. Also Elavil/Amitriptaline is a powerful antihistamine, and Topamax is a calcium channel blocker, and things which interrupt calcium channels stabilize mast cells. Interesting stuff.

  12. Nancy says:

    O.M.G.! There really are others out there like me! Sorry for you all but at least by sharing knowledge, we can learn and hopefully feel better! Is there a place where you all “talk”. I’d love to hear more about what you’ve tried. I can eat about 15 different things at this point and have to rotate many of them. I’d had some food allergies that worsened over the years but between starting menopause, a family loss that evoked stress, and what turned out to be systemic candida left unchecked which trashed my gut which left me with “leaky gut” which is what it sound like you are describing. That’s been nearly 5 years now. Some aspects are so much better since I understood them. My asthma was so bad that the drs thought I had COPD. I had awful eczema on my body. And I was having increasing and just awful migraines. I cut out all grains and those two symptoms settled down a lot! the migraines remain with me daily but depending upon variables, it can be more or less from day to day. Trying to avoid eating triggers so that I wouldn’t want to chop my head off left me dangerously low in weight. I’ve found a few things I can eat that will help with that so weight isn’t scary any longer. Just wanted to say I hope someone is still following this. I’d love to be in a chat group to hear and learn more! Thank you. You’ve reinstalled hope.

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