There are numerous well-written blogs that explain quite nicely what HIT is. Facebook also comes equipped with this nifty little search feature. Yet you can see the same questions popping up about once a week. It’s usually something like “Can you guys tolerate [insert any given food/drink]?” And the answers tend to go along the lines of a) no, not at all. I react horribly b) I can handle a bit, maybe once per week, if my bucket isn’t already overflowing (the emptier the metaphorical bucket, the more histamine can stand to be put in), c) yes, I love it and have it every day, or d) only this one particular variety/brand.
This is because, even though there are countless, often conflicting lists and the Swiss Interest Group arguably provides the best (http://www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf), everyone is different. (The German-speaking world somehow seems to be ahead in all things histamine, as my special histamine-free wine also comes from Austria.) And that’s one thing that I’ve really come to understand and that I can’t emphasize enough – we’re all individual people and react differently to different things. Just because you can tolerate, say, strawberries, which are known to be histamine liberators (they trigger the release of histamine already in your body), doesn’t necessarily get you off the hook. Alcohol is a known DAO-inhibitor that many have had to completely cut out, yet I can handle my liquor quite well. The goal is equal amounts of Histamine and other amines (yes, there are others) to DAO – having too little DAO also leaves more excess amines floating around, wreaking havoc.
At one point I ate eggs and just a few minutes later could barely keep my eyes open, but it was a nice, light snooze. Then I tried some salami (I used to be crazy about salami) and appeared to be fine. It wasn’t until 12 hours later that it hit me. I’d know I was going to have a reaction because I’d wake up in the middle of the night feeling hyperactive. Eventually I’d go back to sleep, but then it was a real fight against to wake up again and, once I finally did, it was all I could do to drag myself out of bed, which only happened if absolutely necessary, for the absolute minimum amount of time, and was an incredible struggle.
The interesting thing is that that insomnia was a regular part of my life until I went low histamine. Many will warn not to restrict yourself too much. Well, I had no desire to restrict myself at all, I was just hoping to find my triggers then add everything else back in and carry on with my life. But even though cutting out foods didn’t solve all my problems and I would crave and cheat left and right, it did help me gain some clarity over what my triggers were and give me unexpected relief from a lot of symptoms. I began sleeping through the night, my wrist stopped constantly throbbing, my elbow didn’t need regular popping, my toes no longer went numb on a cool afternoon, and I didn’t feel like I was going to freeze to death being out on a chilly night.
In my search for solutions, I tried aloe vera juice, holy basil, and stinging nettle supplements. I was looking for any natural anti-histamine/ anti-inflammatory/ anti-antioxidant – none of them worked for me, but that doesn’t mean they wouldn’t for you. Finally, I ended up taking Olive Leaf extract, Vitamin C, and L-glutamine. They all helped initially, but after awhile I realized they were no longer making any difference and stopped taking them.
But before all of this, there was one supplement that did make a difference, the one I couldn’t live without: Quercetin, a natural mast cell stabilizer. I started taking Quercetin years ago for allergies and in that time I never got a cold, my acne cleared up, I wasn’t constantly sniffling, my ears didn’t feel blocked and when I stopped for just a few days to make sure I was really getting my money’s worth or because I’d spaced on ordering more, I was miserable! The interesting thing about Quercetin is, if you look for the science, it’s not there. Web MD will tell you it’s pretty much useless, yet nearly everyone in the HIT groups (who can tolerate it, of course) is taking it. Wonder why..
The reason I began looking into other natural supplements was that Quercetin was obviously no longer enough and the pharmaceutical antihistamines I’d been prescribed left me with unbearable anxiety, same as antidepressants and hormonal contraceptives had for years. Eventually I learned that every one of the symptoms I’ve mentioned, including anxiety, is rooted in inflammation. The problem with antihistamines is that they only block specific histamine receptors. You take an H1-blocker for allergies and an H2-blocker for an upset stomach. When the H1 or H2 receptors have been blocked the histamine can’t enter that particular area, but it was already standing outside, knocking at the door so it just shrugs it’s shoulders and find someplace else to go, like over to H3 – the neurotransmitter. That’s where Benadryl, as a first-generation antihistamine, has the advantage – it crosses right through the blood-brain barrier and puts you straight to sleep, so no anxiety!
Several months after writing both pills off, I was trying a new therapy and had a flare up of H1 (sneezing, sniffling) and H2 (bloating, abdominal pain) symptoms so I gave those two second-generation anti-histamines, another try and they worked! (But they also inhibit DAO and your body will eventually start producing more histamine to compensate for what’s being blocked, so I never take them more than necessary). Once I got really sick and started to learn about HIT, I inevitably learned about mast cells too. Mast cells are the ones that release histamine when they degranulate (explode). The idea behind taking mast cell stabilizers like Quercetin is that they stop mast cells from degranulating, meaning no histamine is released to begin with – obviously a much better solution.
Another important thing about HIT is that there are different causes and you have to find the root of yours in order to treat it properly. The one doctor I found who was familiar with mastocytosis, prescribed me a phamaceutical-grade mast cell stabilizer. Similar to how most people in the HIT groups are on Quercetin, a lot of those in the mastocytosis groups are taking some form of cromoglicic acid, often referred to as Cromolyn or Gastrocrom, or something even more powerful, like ketotifen. The fact that I’d responded so well to Quercetin for so long was a good indicator that I had a mast cell problem, but my doctor hadn’t told me anything about Intercron (my French Gastrocrom) other than to start with 1 per day and increase by 1 vial a week for 4 weeks to avoid my body going on the offence and other sources of information were hard to come by. So when I tried it just 2 days in a row and both days noticed a significant increase in fatigue, I figured it wasn’t for me. Months later, once I’d stopped taking Quercetin and realized that giving the H1 and H2 blockers a second chance had worked, I opted to give my Intercron another try too.
Here’s what I managed to find out: Gastcrom/Intercon contains 100mg of active ingredient, cromoglicic acid/sodium, suspended in a 5ml vial of distilled water, of which just 1% is absorbed. Adult dosage is 2 vials taken 4 times a day, side effects are common within the first month, and results should be seen after 2-3 months.
In my experience, I felt great the first day I upped my dose, then fluish for the next couple days. I dosed at 4 hour intervals, which avoided a dip when one dose wore off, before the next kicked in. Since I was still suffering from fatigue, I’d occasionally put it’s effectiveness to the test and hold off dosing for a few hours, at which point I could hardly bring myself to move.
Sure enough, when I upped my dose again after the 1 month mark, I no longer experienced that fluish feeling, but I still didn’t see any improvement. I’d been having headaches, hand pain, and painful/bloody bowel movements for several months and had had to revert back to a grain-free diet. I’d misattributed all that to a number of other things, before I finally realized the only likely cause was the Intercron. Then I began decreasing my dose and again felt good for a day before the fatigue returned.
For awhile, I’d suspected that the intercron wasn’t actually helping and might even have been making me worse. That initial boost of energy I got immediately after dose changes was nice, but so brief. After that, if I ever missed a dose, I felt immobile and, when I did dose on time, I didn’t have any more energy than I had before I began taking the Intercron. After 11 weeks, I stopped taking it, the head and other aches vanished and I recommenced eating gluten-free grains.