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Histamine Intolerance & DAO: Answers to Your Questions

So many of you emailed me with questions that I put together a Q&A. This is a far broader topic than I can summarize (even with six hours of writing!), but it’s a start. The formatting is ugly and you’ll have to scroll through a lot of text. I’m prioritizing your access to the information over making it look nice. Expect typos.

I don’t have allergies. Could I still have an issue with histamine?

Absolutely. I don’t have allergies either and have no allergy symptoms. Right now, I can only present myself as a case study and say that I’ve encountered multiple people in forums who are histamine-intolerant and do not have allergy symptoms. This is on my list of topics to investigate and I’ll present real data when I can.

What’s the name of the supplement you use and where can I buy it?

The actual name is Histamine Block and it’s available on Amazon. Histame is probably the most popular DAO supplement. It costs less than Histamine Block, but is also less potent. (I’m an Amazon affiliate, so I’ll get a small portion of the sales if you purchase through one of those links. I have no relationship, financial or otherwise, with any company that manufactures or sells DAO.)

What is an HDU?

HDU stands for “histamine digesting unit” and you’ll see it listed on every DAO supplement. It appears to be a scientific term that’s been co-opted for marketing, but the two don’t align. Currently, I only use the numbers to compare the strength of one supplement to another. I’ve also found that, so far, 20,000 HDU is most effective for me.

I don’t get a migraine or headache every time I eat, but I do sometimes and can’t connect it to any particular food. Could DAO help me?

Quite possibly. I think I’m fairly rare to have eating anything trigger migraines (or histamine intolerance symptoms). Far more common is for people to have trouble with particular foods. Certain foods naturally contain histamine or are “histamine liberators,” both of which result in even higher amounts of histamine to your system than is part of the normal digestion process. Most people don’t have as much trouble with the normal histamine release as I do, but run into problems when they eat foods that contain or liberate additional histamine.

What foods contain or liberate histamine?

This is a landmine. The short answer is that you will find many conflicting lists of histamine-containing foods online. Searching forums will confuse you even more. Here’s the list of histamine-containing foods that’s most widely regarded as accurate. You’ll notice that it also includes foods containing tyramine. The two are related (both being amines) and there’s a lot of overlap between them. Tyramine has long been suspected to trigger migraines, and possibly other headaches, so a list restricting both is a good place to start.

Starting an elimination diet is overwhelming and time-consuming and I have tons of guidance to offer. On another day.

Will DAO work if I don’t change my diet?

Maybe, but the odds are against you. Here’s a full post on DAO and diet. lAdded Dec. 3, 2014]

Are DAO supplements safe?

Yes, according to the dietician I’ve been consulting with (who is as close to an expert on this topic as you can get), my naturopath, and the recent DAO for migraine prevention study. Any of the DAO that isn’t used is flushed out through the digestive process. It’s not absorbed in any way, nor does it stick around for more than a few hours. (The information in the last two sentences is from my naturopath. I’m going to double-check it with the dietician.)

Do DAO supplements have any side effects?

None of the 117 patients who completed the aforementioned study of DAO for migraine prevention reported any side effects. That’s pretty much unheard of for a study of a drug or supplement. Online forums are a little different (and also not part of a controlled experiment).

The main side effect I’ve seen on forums is that some people say it makes them shaky. That was true for me initially. Taking the DAO only five minutes before I ate seemed to help, I think because it didn’t sit in my stomach for too long without food. I did that a few times before moving to taking it 10 minutes before eating. My intuition is that it is more effective if it has more time to release before encountering food, but I don’t know that for sure. I’ll ask my dietician about it.

Someone just told me that she flushes and sweats when she uses any brand of DAO supplement. That’s the first time I’ve heard of that side effect and I don’t know how common it is.

I sometimes react to natural supplements. Am I likely to react to this one?

I’ve demonstrated so much intolerance for natural supplements that my naturopath only prescribes pharmaceuticals for me(!), but I’m doing fine with this one. Use your own judgment to decide if the risk is worth it for you. If your reactions tend to be severe or you think the risk is too great, consulting with a naturopath or dietician before taking it would be wise.

Where did you learn about DAO supplements?

The dietician and my naturopath both recommend it. It is also commonly used among people with histamine intolerance, so it’s mentioned on forums a lot.

If I have a histamine issue, could I take antihistamines instead?

If your triggers are connected to food or eating, it appears to be more effective to take DAO than an antihistamine. Adding the enzyme you’re deficient in seems to address the problem more directly than an antihistamine. Antihistamines can also cause a strong enough rebound effect that the dietician warns against them. For now, I’m still taking 12 mg of cyproheptadine, a prescription antihistamine used for migraine prevention, each day.

If you do decide to try an antihistamine, patients with histamine intolerance (whether their symptoms are migraine, headache or something else) seem to have more success with older drugs, like cyproheptadine and Benadryl, rather than the newer ones (Allegra, Claritin and Zyrtec). I don’t know why.

What’s “histamine intolerance”?

Histamine intolerance (often referred to as HIT) is when someone has a reaction to ingesting histamine and/or the release of histamine that accompanies digestion. The reactions vary, but can include diarrhea, headache (and migraine) nasal congestion, wheezing, low blood pressure, irregular heart beats, rashes, flushing, and itching.

Histamine intolerance isn’t a food allergy, but is a food sensitivity (it’s an important distinction). It’s not widely known about, but is starting to get a lot of attention in parts of Europe (especially the U.K.) and Australia. Thanks to the internet, the information is accessible if you know where to look.

For what it’s worth, I haven’t been diagnosed with histamine intolerance, nor have I diagnosed myself with it. But it’s the best search term to find information on histamine and food, and it’s the term most people who have issues with histamine apply to themselves.

Why do you qualify so many statements with “appears to” and “seems to”?

There are a lot of unknowns about histamine and DAO. Finding solid information online is difficult and patient groups lean toward pseudoscience. While I believe I’ve sussed out reliable information, I would rather say I’m not absolutely sure about something than discover that I presented incorrect answers as fact. If I continue to feel as good as I have this past week, I’ll soon be combing through journal articles at the local university library and will pass on what I uncover.

What else do I need to know?

I’m sure I’ll be sharing much more as the week — and year — goes on. If you want to know more NOW (I sure did when I first started learning about this), here are some places to get started:

  • Histamine Intolerance Awareness (website) — The food list on this site is kind of difficult to follow and some of the inclusions are questionable, but the rest of the information is a very helpful start. Genny Masterman, who put this site together, has a book called What HIT Me? It’s a good introduction and is written in an accessible, easy-to-follow style, but I found the meatiest information to be covered sufficiently on the website.
  • Dealing with Food Allergies (book) — This is my favorite book for the general public, even though the title is misleading (histamine intolerance is NOT an allergy). It doesn’t contain a lot of detail, but hits all the important points and has clear, well-organized food lists. Be sure to check the sections on both histamine and benzoates (benzoates are histamine liberators). I think there’s a section on tyramine as well. The author, Dr. Janice Joneja, the dietician I’ve been working with.
  • Histamine and Histamine Intolerance (journal article) — If you’re willing to wade through an academic article, this is the one to read. I’m working on summarizing it, but not sure when it will be ready to post.
  • Other websites — If you come across another website and are wondering how accurate it is, please ask me. I’d like to have multiple sites to refer people to and it would be helpful to see which sites people who are new to this topic find.

Please remember that I’m not a medical professional and nothing on this site should be considered medical advice. I’m a patient reporting on what I’ve learned and experienced. I hope that it can help you with your own sleuthing, but please solicit the input of your health care team.

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The Post I Never Thought I’d Get to Write

Not only do I think I’ve figured out my biggest migraine trigger, I have a way to treat it. Even better, the treatment is simple and straightforward and feels sustainable for the long-term. As an added bonus, it lets me eat peanut butter.

Here’s the gist, which may have gotten lost in the epically long post about mast cells, histamine and diamine oxidase a couple weeks ago:

  1. Whenever a person eats anything, histamine is released as part of the digestive process.
  2. An enzyme called diamine oxidase (DAO) processes the released histamine.
  3. I do not produce enough DAO (nor do many other migraineurs, according to at least one researcher).
  4. Without enough DAO, I can’t fully process normal amounts of histamine.
  5. All that unprocessed histamine is a major migraine trigger for me. (Studies suggest histamine could be a trigger for some percentage of people with migraine.)
  6. By taking a DAO supplement 10 minutes before I eat, I’ve been able to eat without getting a migraine.
  7. Histamine Block, the supplement I started this week, is much more potent and more effective than the one I was experimenting with a couple weeks ago, hence the drastic improvement. [Tons of people have asked where to buy the supplement. The name is Histamine Block and it’s available on Amazon. Click those words and you’ll get right to it.]

Despite still having constant head pain, it is sometimes as low as a level 1 and I haven’t had a real migraine since last Friday. I literally cannot remember the last time I felt as good as I have in this week.

Unsurprisingly, it has been a tremendously exciting and weird week. Multiple times, I’ve been driving with the windows down, dancing and singing at the top of my lungs, the stereo blaring so I don’t have to hear myself sing — and crying. I just can’t get over how normal life suddenly seems.

I’m so overjoyed and overwhelmed that I can’t make sense of the mass of thoughts jumbled in my mind. Could this treatment — which is so obscure as to be unheard of by the vast majority of headache specialists — really be “it”? Am I embarking on a future without daily debilitating migraine attacks? What does day-to-day life without a constant migraine even look like? Is my greatest wish actually coming true?

1/24/14: I awoke at 5 a.m. worried this post made it sound like I think I’ll never have another migraine, so here’s a clarification. I do not. I even expect they will stay chronic. My greatest wish isn’t to be pain- or migraine-free, but to not have a migraine all. the. time.

Having a migraine triggered every time I ate has probably been the greatest burden of chronic migraine for me. Figuring out something that’s contributing to that one piece of the puzzle — and having any sense of normalcy — is exhilarating.

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Being a Human Guinea Pig and Digging into Clinical Research: Food and Histamine, Mast Cells and Migraine

The treatment approach/information gathering technique I describe below is highly unconventional, but the discoveries it led to were invaluable. I do not recommend that anyone try what I’ve done. If you absolutely have to, only do so under the guidance of a medical professional and a dietician. 

Two years ago I wrote about the “extreme migraine diet” I was embarking on, which eliminated tyramine and tannins. Given the increasingly drastic dietary changes I’ve undertaken in the last nine months, what I thought of as extreme two years ago now looks like a delicious smorgasbord.

Last I told you, I was trying to reintroduce foods to correct the malnutrition caused by an unwise elimination diet. Everything I tried, even the most benign foods, triggered migraines. So I stopped eating.

My Last Couple Months: Tolerex, Food Reintroduction, Migraine Discoveries

Under the guidance of a dietician, I consumed nothing but water and an elemental formula called Tolerex for two weeks, beginning the weekend before Thanksgiving. (Elemental formulas are used in feeding tubes. Tolerex is a basic formula that’s well-tolerated by many people and contains complete basic nutrition, but is only a sustainable diet for people with GI disorders that inhibit processing certain nutrients. Its flavor is mostly neutral unless I have a migraine, then the taste and texture nearly make me gag. Also, migraine or not, if the Tolerex is not at the exact right temperature, it tastes like the smell of wet dog.)

The first week on only Tolerex, I still had constant head pain, but had only two migraines, both of which had obvious triggers (weather for one, massage for the other). Let me repeat that, I, the woman who has had one migraine run into another every day for at least a decade, had just TWO distinct migraines in a single week. Fatigue? Gone. Brain fog? Gone. If I believed in miracles, this would qualify as one.

After two weeks of Tolerex, I began reintroducing food. Once again, everything triggered a migraine. A quarter cup of red lentils, a quarter of a matzo, five Brussels sprouts, oat bran, a quarter cup of brown lentils, a quarter cup of juiced beet greens…. Frustrating for sure, but I also learned a ton about my migraines in that period.

  • I know what it feels like to not have a migraine. (How sad it is that I had such severe, daily migraines for so long that I had forgotten what it was like to not have one.)
  • I know what it feels like to go through the four distinct stages of a migraine attack.
  • I identified three different types of migraine onset: one builds over a few hours, slowly adding new symptoms as it intensifies; one is immediate with all the symptoms all at once; one starts with killer pain, then adds brain fog and fatigue.
  • Tooth sensitivity is my most consistent prodrome symptom and it’s very reliable — that’s partly because 90% of the time it’s the earliest symptom I have and partly because my teeth are only sensitive during a migraine.
  • Triptans work for me. They’ve always been hit or miss — usually miss — because identifying when a migraine was coming on was so difficult that I couldn’t take triptans early enough for them to be effective. Now I take a triptan as soon as I notice symptoms and it’s like a freeze frame: the symptoms stop right where they are and stay that way for anywhere from a few hours to the rest of the day.
  • I’ve confirmed that the brain fog and fatigue are definitely tied to migraines. I’d long suspected that, but sometimes wondered if a different, undiagnosed illness was really the culprit. Now I’m 100% sure that my brain fog and fatigue are due to migraine.

These are all great discoveries, but there’s still the glaring issue of food triggering migraines. It’s not just certain foods that are the issue, but the very act of eating nearly anything sets a migraine in motion. At least I think I’ve figured out why and it may be the most exciting discovery I’ve ever made.

Histamine & a Bit About Mast Cells

It all comes down to histamine. Over the last couple of years, medication and diet have established that histamine is a major migraine trigger for me. Clinical evidence as far back as the early 80s supports this notion, with research showing migraineurs have increased levels of histamine in their blood and in studying the role of antihistamines in migraine prevention. More recently, the role of mast cell degranulation (which releases histamine, among other things) in triggering migraines has come to light and is a topic of increasing research interest. (You can learn more about all this in Mast Cell Degranulation Activates a Pain Pathway Underlying Migraine Headache or, the more accessible Hunting for Cells That Trigger Migraine from the National Headache Foundation’s newsletter.)

How is this connected to eating? Certain foods contain histamine and others are considered histamine liberators. Furthermore, histamine is released as part of the digestion process whenever anyone eats anything. And this, I believe, is the crux of the problem for me. This normal histamine release is somehow too much for body and it sets a migraine in motion.

Fortunately, there are some ways to work around this problem. I can avoid all foods that contain histamine or are histamine liberators, juicing all my fruits and vegetables so they are easy to digest (this is a hypothesis I’m in the process of testing), and take a supplement called DAO before eating (more on that in a minute). I can also take medications that are considered mast cell stabilizers. There are a variety of possible medications, some of which are prescribed for migraine, like amitriptyline (Elavil), prochlorperazine (Compazine), and promethazine (Phenergan). If none of those work, there’s another long list of possible medications and even some dietary supplements that are considered mast cell stabilizers.

Diamine Oxidase (DAO)

Of all these possibilities, taking a DAO, diamine oxidase, supplement is the most promising right now. DAO is an enzyme that processes the histamine that’s released as part of digestion. All humans have DAO, but some people produce insufficient amounts. One researcher claims that DAO deficiency is common migraineurs. My genetic testing indicates that I’m likely one of those who do not produce enough DAO.

By taking the supplement, which is made from pigs’ DAO, before I eat, I’m able to eat more foods without getting a migraine. A study presented at the World Congress of Neurology last September examined the use of DAO as a migraine preventive. The main finding was that DAO could shorten the duration of migraine attacks, but there was some indication that it could also reduce the frequency of migraines, though intensity appeared unchanged. Participants who received DAO (rather than the placebo) significantly reduced their use of triptans. It was a small study and early research, but is definitely intriguing.

Some people may be able to take DAO and eat whatever they want without adverse effects. It doesn’t look like I’ll be one of them. I’m still sorting out exactly what foods I can eat without triggering a migraine when I take DAO. I will likely still have to avoid foods that contain or liberate histamine, though some people with histamine issues are able to reintroduce “forbidden” foods after avoiding them for a while.

Unfortunately, as I test more foods, the migraine triggers get murkier. Sometimes I even  wonder if DAO itself is a trigger (although, the “experiments” I’ve done the last two days indicate that the trigger may actually be a different food chemical that’s unrelated to histamine. I clearly still have a lot to sort out.).

More on Mast Cells & What’s Ahead

Those are the questions I’m juggling in the short-term. In the long-term, I’m exploring the possibility that I have a mast cell disorder that underlies my migraine frequency. As I mentioned above, recent research indicates that mast cells play a role in migraine. Mast cells are normal, healthy cells that everyone has. They defend against pathogens and heal wounds, but they also are intimately involved in allergies and anaphylaxis. One of their functions is to release histamine when the body needs it. Some people have too many mast cells (mastocytocis), while others seem to have “twitchy” mast cells that degranulate too readily. Either case causes an excessive histamine release in the body.

Mast cells are yet another medical area in which there isn’t a lot of research (of course I wouldn’t wind up with a well-understood disorder). Because mast cells are such a major player in allergy and immunology, that’s what most of the research focuses on. The good news is that I have an appointment with an Arizona-based mast cell specialist at the end of the month. The bad news is I have to convince him to take my case seriously even though I don’t exhibit typical allergy-like symptoms. He’ll either find me an interesting anomaly or will think I’m wasting his time.

Next week, I see my headache specialist, an appointment I’m both eager and nervous about. He’s shown nothing but respect for me and has always believed and supported me in the past. Still, telling a renowned migraine researcher that my primary trigger is eating is intimidating. This may be the time he laughs me out of the office. Or he could go to bat for me with the mast cell specialist or could connect me with migraine researchers interested in histamine and mast cells.

Phew! I’m Almost Finished

Thanks for sticking with me through this incredibly long post. Every time I find a treatment that seems promising for me personally, I first wonder if it will help my niece who has chronic migraine, then I wonder if it will help any readers of The Daily Headache. I want very much for the connections and discoveries I’ve just told you about to help at least one other person sort out their migraine mysteries. What I’ve learned in the last couple years (and especially the last couple months) really feels like a step toward that. I’ll keep you posted.

P.S. I’m not sure if I’ve turned a corner with the dizziness that’s kept me off the computer for the last six weeks or if today is a fluke. It’s much less noticable when my medication can be digested along with solid food, rather than Tolerex alone, but I’m still not eating solid foods every day. I hope I’m back – I’ve missed writing so much.

P.P.S. Please don’t be worried about my current nutrition. I had my September blood work re-done a month after starting Tolerex and it’s back to being perfect. Tolerex is not a long-term solution, but it’s way, way more nutritious that what I’ve eaten in most of the last year.

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