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.
Related posts:
- Being a Human Guinea Pig and Digging into Clinical Research: Food and Histamine, Mast Cells and Migraine (Jan. 9, 2014)
- The Post I Never Thought I’d Get to Write (Jan. 23, 2014)
- Histamine Intolerance & DAO: Answers to Your Questions (Jan. 25, 2014)
- “Histamine Block” Does NOT Block Histamine! (Feb. 24, 2014)
- Diamine Oxidase (DAO) is Why I’m Doing Better (May 6, 2014)
- Testing if Your DAO Level is Low (May 12, 2014)
Salicytes foods can cause problems
I’ve suffered many headaches too. I know my symptoms are all related to mast cell condition. My daughter is 33 and she has symptoms too. Along with headaches she gets ringing in her ears. Also reacting to flu shots. Or injections. I’m going to get her to mast cell specialist after I receive my full diagnosis
Good luck to everyone. Check out high salicytes foods. It may help you
I’ve seen a specialist . I’m taking pepsid 2 x a day, also rapid release Claritin 24 hr 1x a day . That did not help my pain, the mast cell specialist added cromolyn 100/5 ml liquid tubes. This is a mast cell stabalizer. I had to use 100 in morning for 1 week. Then every week I went up 100 ml so after 3 weeks I was using it 3 xs a day.
It’s been a few months now and I’m taking full dose. 200 ml 4 xs a day. Or 800 a day
My pain is much better. I’ve gained 20 lbs too. Dr Castells believes I have MCAS. . But I have more tests to take. My platelets have been very low since 2008. I have a treatment that helps them. But since taking this medicine my platelets have gone from 40,000 very low to 144,000 which is almost normal. I’m still scared to eat other foods.. I avoided milk, butter, sugar, steak. For past 4 yrs. I was able to use butter now
And have taken a few bites of steak without a problem. It had been causing shortness of breathe. And severe fatigue within 10 min of injecting. I was fine.
My GI specialist suggested avoiding high salicytes. I researched salicytes and realize they do affect me negatively. And have thru my life. I was using olive oil and it’s high in salicytes. I’ve stopped and switched to canola oil. And butter
I will update if my diagnosis changed. My doctor thinks I could have mastocytosis. I believe I do because of my platelets. I believe they will confirm this with a bone marrow. My oncologist did a c kitblood test for a gene that confirms mastocytosis. He said it’s negative. The specialist did her own test and said it’s positive. Im.confused. and just want a bone marrow.
I’ve suffered with sever reactions and pain since 2008 . No doctor could figure this out. I knew I had a mast cell problem after Googling my symptoms last jan. It was really tuff to convince my doctors. I drove an allergist nuts until he finally gave me a referal to mastocytosis specialist in boston. It takes a long time to get an appt with her but I called every day to see if there was a cancellation. Luckily they had one and called me in . I was so sick . At 93 lb. I’m 5’7 tall. Down to bones. I’m now 115 and look better.
Please notify me when other comments are posted, I forgot to check the box,
Thanks
Sandy
I am suffering with neuropathy in my feet pain. Low back, my heart races to fast, diarrhea, constipation, interstitial cystitis, low platelets, I’m freezing, yet sweating, can not regulate my temp. Odor from perfumes chemicals, cause headache, Positive B cell leukemia. Food is causing these reactions including the pain, Medications too. I’ll get blood in my bowels or burning, my bladder will start burning like knives are stabbing me if I use a yellow antibiotic, Dyes and even Tylenol from a compounding pharmacy is causing me more pain.
I know I have a mast cell disorder, I was told I have a very high histamine count in my bladder, 17 yrs ago, I controlled it by changing my diet, I was 38 then,
When I turned 48 menopause started and my pain started then, Now I’m so much worse off, a nutritionist told me my body is loaded with histamine and it can’t dump them, No allergist can see a problem. Or an allergy, I took a ELLISA TEST and an MRT mediator release test and they show lots of intolerances, like milk, yeast, tylenol, ibuprofen,yeast, dyes, preservatives, beans, etc….,., but my doctors do not believe me or in that kind of test.
Do you think it’s safe for me to try a low dose of the DAO enzyme
Let me know what you think, I’m desperate.
I would like to try this histamine block, or DAO capsule, I believe I’m suffering with a mast cell disorder, I have neuropathy pain in my feet, low back pain, now my coccyx bone which is lowest part of spine feels like it’s bruised or inflammation , I know food , medicines, even odor chemicals are triggering my pain.
Do you think it’s safe for me to TRY ? I’m reacting to everything, oxycodone that has no Tylenol helps my pain, My dose was lowered and my pain clinic is no longer going to treat me, I’m scared my pain is so bad. I have an appt with a specialist, Dr Castells in Jan 2018. Seriously can’t wait that long, Im very thin, 96 lb. im 30 lb underweight for my height.
I have no allergies according to allergist yet reacting, My heart will race to fast, or I’ll get a headache, or diarrhea, or short of breathe, I am only tolerating 5 foods and water now, I’m still intolerant to the few foods I eat because my feet kill unless I stop eating for 2 days,
I have very low platelets, interstitial cystitis, and a form of leukemia, I feel it’s all related to mastocytosis or MCAS. Anyone reacting to this enzyme
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.
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.
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.
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
I meant to type MCAD– mast cell activation disorder.
I have MAOD and just read about the Histamine Block. I currently take Histame…so very thankful to find a cheaper alternative:-)
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
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.
Thanks for the suggestion, KC. I’ll look into it.
Take care,
Kerrie
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!
Please let us know how it goes, Michelle! My fingers are crossed for you.
Kerrie
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!
Thanks for sharing your story, Aanda. I’m so glad you’ve found some relief by going gluten-free!
Kerrie
hopefully! : )
yay for decaf coffee not triggering things for you! I am dearly missing black tea right now on the low histamine diet . . .
Thanks! I can’t have it every day, but a few days a week is good enough for me. Perhaps one day tea will be OK for you with a little extra DAO?