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Testing if Your DAO Level is Low

Yes, there’s a test that measures diamine oxidase (DAO) levels in the blood. No, it’s probably not worth your time or money to get it done. (Wondering what DAO is? Start reading here and follow the links at the bottom of that post for more information.)

There are two issues. The first is there’s no well-established range of DAO levels. There’s speculation and you’ll find ranges listed, but they aren’t yet backed by solid science. Also, it’s not known whether the amount of DAO in your blood is indicative of how much is in your gut, which is where it really matters.

Genetic testing can show if you have mutations in the genes related to DAO production, but not how much you actually produce. While the test confirmed that I probably make insufficient amounts of DAO, dietary research, an elimination diet and testing DAO supplements were more informative.

The best way to find out if you’re low in DAO is to try taking the supplement. You can get small a bottle of the highest strength DAO for about $30. If you’re going for a high dose, use Histamine Block rather than Histame. (The Amazon link defaults to the more expensive 60 capsule bottle. Click on “30 Easy-To-Swallow Vegetarian Capsules” in the box below the “in stock” notice to choose the less expensive bottle).

It took about a month of playing with the amount of DAO I took and how long before meals to take it before I hit on the right set up for me. The label recommends taking two no more than 15 minutes before every meal. I’ve found each capsule covers about 400 calories, though I take more if I’m eating a high-histamine food, like fish. I currently take it about 8 minutes before eating (or even drinking coffee or herbal tea) and am sure to finish eating within 45 minutes. As you’ve read, the change was drastic once I hit on the right combination.

This was while eating a low-histamine diet, which I recommend trying. Even if you don’t, read the list of high-histamine foods and take extra DAO when you eat them. (Some of those foods are also high in tyramine, which has long thought to be a migraine trigger. DAO does not help process tyramine and there is no digestive enzyme that claims to.)

The capsules are expensive (about $1 each), so I initially felt a lot of pressure to take no more than I absolutely needed. For the sake of dietary variety, I’ve relaxed a bit and now err on the side of too much with foods I’m uncertain about. Other than pocketbook pain, I have no noticeable side effects. I thought heartburn was an issue for a while, but that has resolved (it was likely due to reintroducing fat after going so many months on a very low fat diet). I’ve been reassured that DAO is safe and that any that’s unused gets flushed right out. That’s why you have to take it before every time you eat — it doesn’t stick around.

I know many of you are hoping that DAO will help you as much as it has me. If you do decide to try it, play around with dosing and when you take it. If you get any relief from it, it might be another addition to your treatment plan. Every little bit adds up.

Still have questions? Please ask them in the comments or email me at kerrie[at]thedailyheadache[dot]com and I’ll try to answer them.

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Diamine Oxidase (DAO) is Why I’m Doing Better

The Amazing Feat of a Normal Life prompted a lot of questions about why I’m feeling so much better. It’s still the digestive enzyme, diamine oxidase (DAO), that I started in January. (To learn more, read The Post I Never Thought I’d Get to Write and follow the links at the end for more details. If you want to try DAO yourself, you can get it through Amazon. Even though it’s called Histamine Block, it isn’t an antihistamine and doesn’t block histamine.)

I continue to follow a restricted diet, though that’s more about wanting to reintroduce foods slowly and methodically rather than any particular food being a problem. As long as I take DAO, I’m doing great with nearly every food I try (even dairy and wheat). I’ve even tried a few high-histamine foods (with a little extra DAO) and have done fine.

The other dietary change is that I’m eating most foods on a rotating schedule, leaving two or three days between each time I eat a particular food. I began this when I developed an intolerance to coconut after eating it multiple times a day for months without a problem. This has been a very effective way to vary my diet.

It’s a slow process, but I’m getting almost complete nutrition from the foods I eat (I’m still a little low on calcium). I eat mostly vegetables, though I have salmon a couple times a week and am currently testing eggs and milk.

That’s it. I’m past the three-month placebo window and continue to feel better than I ever thought possible. I know DAO is an unconventional migraine treatment. I know the science behind it is weak. I also know it’s working better for me than anything else I’ve ever tried.

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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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“Histamine Block” Does NOT Block Histamine!

Histamine Block, the diamine oxidase (DAO) supplement I told you about does NOT block histamine! After my fifth loved one asked about “that histamine blocker you’re taking,” I thought I should explain the difference explicitly.

DAO is a digestive enzyme that breaks down histamine in food and histamine that’s released as part of digestion. Not everyone produces sufficient amounts of DAO. Histamine Block contains that enzyme (from pigs). This is what all DAO supplements do — they do not block histamine, they temporarily give a person the enzyme that breaks down histamine in the digestive tract.

It’s easiest to explain in terms of a well-known enzyme deficiency, lactose intolerance. People who are lactose intolerant have a deficiency in the enzyme called lactase. Without sufficient amounts of lactase, the digestive tract cannot properly break down lactose. Some lactose-intolerant people can take Lactaid, a lactase supplement, to eat products that contain lactose without symptoms.

Similarly, some people can take DAO and eat foods that contain or release histamine that they could not tolerate without supplementing the enzyme. Others, like me, can’t even effectively process the histamine that is always released as part of digestion, even if they eat low-histamine foods. (To complicate matters, insufficient DAO production is not the only reason a person could have trouble with dietary histamine.)

Why is the supplement called Histamine Block if it doesn’t block histamine? Marketing. A name like Histamine Block tells consumers before they look at the fine print that that the product is likely to reduce histamine-related issues. It also confuses people who want to understand how the product works and what it does.

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Reintroducing Foods, Reintroducing Migraines

After reading The Post I Never Thought I’d Get to Write, you may think I’ve been gallivanting around town, throwing parties, and having a grand old time this week. I wish. I’ve been testing foods… and having migraines.

There’s no way I was going to waste all the work to eliminate food chemicals from my diet without reintroducing them slowly and methodically. Testing was going great until the day I stopped drinking the elemental formula completely. So now I’m playing around.

“Playing” sounds like fun. It’s actually tedious and frustrating. Here are some of the variables I’m investigating:

  • Do I need more DAO than I’ve been taking?
  • Would I feel better if I took one Histamine Block before eating a small meal, rather than taking two and eating a larger meal?
  • Are the foods I’m eating too difficult to digest?
  • Would juicing fruits and vegetables ease digestion and, thus, not trigger migraines?
  • Am I sensitive to salicylates (the food chemical I was testing)?
  • Am I reacting some other food chemical that I wasn’t on the lookout for?
  • Do I need to rotate foods? (If so, how in the world can I do this with only a few sources of protein and mostly vegetables, which won’t meet my caloric needs for a day?)
  • Is just one food in the group I reintroduced problematic?
  • Does overall sugar content matter?
  • Does not drinking water with a meal reduce the possibility of a migraine? What if I drink a lot of water with a meal?

The food details are even more complicated because I no longer have reliable indicators for when a migraine is coming on. Tooth sensitivity can come on part way through a meal, last for two hours, then stop without a migraine ever developing. Fatigue can come on and then abate after an hour. I don’t want to waste a triptan or drug myself up unnecessarily, so I don’t take anything.

So, I’ve had a migraine every day for the last week (I had one when I was writing last Thursday, I just didn’t realize it), but the pain has only reached a level 5 once. When a migraine hits a level 4, it doesn’t stay that high for long. Much of my days are still spent with pain levels at a 2 or 3. Fatigue is generally short-lived and brain fog is not severe. For me, this is Disneyland.

I am not discouraged. I knew reintroducing foods would increase the migraine attacks and that sorting out all the dietary variables would be messy. I still believe DAO and histamine are valuable pieces of my puzzle. Exactly how they fit into the picture is still unclear, but you can be sure I’m going to find out.