histamine intolerance after menopause

Posted by bjklemme @bjklemme, May 26, 2023

Just a few months after menopause I got a strange cluster headache (it was like being electrocuted on one side of my head every few seconds) that lasted for days and would only go away after an ER visit and prednisone. Prior to the headache my ears were ringing, I had rhinitis, my ears would start to itch in the evening and my blood pressure was low. I thought it was a one-off but then it repeated 1 1/2 years later on the other side.

Accepting that I had a chronic migraine I put up with tinnitus on and off in my left ear. About a year ago I got chronic diarrhea and gastric reflux. I thought they were unrelated until the symptoms got so bad that I noticed there was a direct connection between the symptoms and eating food with histamine. Basically, within minutes of eating the food, my left ear itches, then starts to ring, and my nose runs. The same night I will have heart palpitations while falling to sleep and then pulsatile tinnitus during the night. I wake up every morning between 3 and 5AM flushed, with my ears ringing and nose running. I also get rosacea, eczema, (and now dermatographia), which correlate with the histamine reactions. Benadryl is very effective in aborting the reactions but other antihistamines don't work or seem to make it worse. Propranolol also works but I don't like taking it because my blood pressure is already low.

I could get no help from doctors and specialists. Now a year later (on a low histamine diet) I am free of the diarrhea and reflux but still cannot eat histamine. I talked a gynecologist into measuring my estrogen level and it came out to 17 pg/ml, which strikes me as very high for 5 years past menopause. I started on progesterone cream and used a lot ( a blood test confirmed that I had increased my progesterone a lot) and for the first time my symptoms abated.

I am still trying to figure out what is going on and what I should do. I am not sure I should keep using so much progesterone. Also, I have recently noticed that my symptoms are consistent with high prolactin levels. That is why benadryl, propranolol, and progesterone all seem to work but other antihistamines don't (if my guess is correct). An MRI has shown a normal pituitary.

I read that this could be caused by gluten sensitivity, although I don't seem to be reaction to gluten. My current plan is to go cold turkey on gluten, histamine, and progesterone and then measure my prolactin. Then add the histamine, and gluten back individually.

Any help would be greatly appreciated! This has turned my life upside down. I am unable to eat normally, in restaurants, and travel is difficult. I continue to have the "migraine" symptoms every single night.

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It is actually not possible to be allergic to histamine itself. But if you look up "histamine intolerance" on the internet you will come across a lot of bunk. A better term is "vasoactive amine sensitivity". It is thought to be do to a deficiency of the enzyme that degrades histamine and other biogenic amines in food in the gut. The enzyme is called DAO. If you have it, nothing will show up on any tests, and there is no reliable test for it, or DAO deficiency.

In my case, I am having severe reactions to foods with either histamine or biogenic amines. I don't have the symptoms if I stay off the foods (which is nearly impossible). The reactions happen within 30 minutes at which point I start to go into a vasodilation process, which triggers the pulsatile tinnitus and migraine. I also can get hives, rosacea, and diarrhea.

If I try to eat while on Pepcid, it's like eating dynamite (probably because if you block the H2 receptors it can increase histamine in the gut). My reactions are very intense and Allegra is not strong enough. Also, it alters my alertness -I have a job basically doing math all day.

I was not treated well at Mayo Allergy. They acted like they did not believe what I was saying and just making stuff up from the internet. It was a horrible experience. And they sent me home with intense, frightening symptoms and no place to go.

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Lest anyone take away from this that the absence of definitive lab tests for histamine intolerance is an excuse for the lack of attention to this condition in the US, I would like to list the conditions that I was erroneously diagnosed with, without any confirmed laboratory diagnostics whatever (many of which I did not have the symptoms of). In some cases I was prescribed inappropriate and dangerous medications:

GERD: symptoms resolved on the low histamine diet. Not before I was prescribed the equivalent of 8 Pepcid a day, which made me blow up like a balloon and lose my appetite.
Generalized Anxiety Disorder and Panic Attacks: The reactions can cause a sudden drop in blood pressure and a temporary surge in anxiety.
Afib: the good cardiologist at Mayo cleared me of this, but not until after I got on flecainide (which made me very sick) and blood thinners (which are dangerous). This histamine intolerance causes a lot of heart palpitations.
Lupus: An ANA test during a particularly bad reaction prompted a visit to a Rheumatologist. A subsequent, more adequate test revealed lowered counts and were negative for Lupus. He declared that I had it anyway. I have no symptoms of Lupus.
Atypical Migraine: At least this fits some of the symptoms, however Barrow thinks the migraines are not of neurological origin.
Chronic Ideopathic Utricaria: Actually, this fits. But it does not show up on any laboratory test.

That's just the MDs. From the Integrative Doctors:

Autoimmune Condition (unspecified): Like I am going to purposely suppress my immune symptom. I don't have the symptoms of any autoimmune disease, although I did get cleared of Celiac disease (that would have made sense). The same practitioner wanted to put those estrogen pellets in my skin. Since estrogen had made the symptoms go through the roof that would have been unwise (they can only be surgically removed -at least the patches you can rip off).

Leaky Gut: Actually, there is some really scientific evidence that increased intestinal permeability could be a factor in this. But the microbiome testing was clearly bunk and the diagnosis pre-determined (no matter what it showed). Some of the strange bacteria were clearly from my mouth. I was expected to buy a bunch of expensive and unproven supplements. If the practitioner had been listening at all, she would have known that I could not possibly tolerate apple cider vinegar anyway.

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I circled back to the Allergist who diagnosed me with Chronic Urticaria (Hives). We had a good discussions and I am convinced that this is the correct diagnosis for my case. Yours is even more straightforward. I would not go down the histamine intolerance rabbit hole unless you are having very direct and obvious reactions to foods containing histamine, like I am.

There is a very interesting article: "Is Chronic Urticaria More Than Skin Deep" in Clinical and Translational Allergy by Kocaturk and Gratten that describes my symptoms. It's possible to get Chronic Hives without getting hives, but it's unusual. On top of that, a small percentage will be intolerant of histamine. That's one reason I have had so much trouble with doctors.

"Histamine Intolerance" is a more frustrating diagnosis than Chronic Urticaria and it's not really a diagnosis at all. It's a symptom.

Best of luck to you. I am lucky I don't get the hives. You could try staying off fermented foods and see if they abate but a low histamine diet is very restrictive and you could end up malnourished if you are not careful. Contact a good registered dietician to help you.

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It sounds like you have already done a lot of research and reading. The info in this link is probably old news to you, but I found it helpful. I'm really glad you brought this topic up, because I'm starting to think that maybe some of my migraine issues could be related to histamines and related compounds.
https://lowhistamineeats.com/anti-histamine-foods/

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Hi there! Thank you for your response.

I have done a lot of research and one thing I no longer do is believe anything on any blog or integrative medicine site. Possibly some are legit but I have found the information to be largely unreliable. I only read papers from medical journals. I've read just about every one published. I also have my own experience to draw from

I would like to clarify that I never went on any kind of "elimination diet" and I don't recommend them. I get a pretty intense reaction within 30 minutes of eating any food with histamine in it, so I do not need any kind of diet recommendation or food list. I am not able to eat chicken or fish (unless I order it frozen fresh from a special vendor) and certainly not avocado. I can't eat anything fermented, hard cheeses, or processed food. One of the more misleading food recommendations on the blogs and sites is olive oil, which is very high in histamine and I react to it very badly. In fact, I measure the level of my histamine intolerance in 1/8 teaspoons of olive oil. That being said, there may be more mild cases and maybe you could see if you get some improvement in your migraines if you just stop eating fermented and processed foods.

Another thing you will see on these sites and food lists are a lot of foods that don't actually have any histamine in them called "histamine liberators", which is a meaningless term. It just means: "anything anyone has reported ever reacting to". I found that I do have kind of pseudo-reactions to these foods if I eat them AFTER I eat something with histamine in it. This may because my symptoms (from the histamine) are from vasodilation and the other foods are simply vasodilators or maybe increase NO.

Also, I ordered some of the DAO tablets from a company in the Netherlands. There is a company in the US that makes them but when I tried the they did not work and after reading about the manufacturer, I did not want to deal with them anyway. The ones from the Netherlands DO work, but only up to a point. They help with the equivalent of about 1/2 teaspoon of my olive oil. It does take the edge off but they don't allow me to eat normally.

Best of luck with your migraines. Just don't get too drawn into the histamine intolerance/elimination diet trap.

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@bjklemme

Hi there! Thank you for your response.

I have done a lot of research and one thing I no longer do is believe anything on any blog or integrative medicine site. Possibly some are legit but I have found the information to be largely unreliable. I only read papers from medical journals. I've read just about every one published. I also have my own experience to draw from

I would like to clarify that I never went on any kind of "elimination diet" and I don't recommend them. I get a pretty intense reaction within 30 minutes of eating any food with histamine in it, so I do not need any kind of diet recommendation or food list. I am not able to eat chicken or fish (unless I order it frozen fresh from a special vendor) and certainly not avocado. I can't eat anything fermented, hard cheeses, or processed food. One of the more misleading food recommendations on the blogs and sites is olive oil, which is very high in histamine and I react to it very badly. In fact, I measure the level of my histamine intolerance in 1/8 teaspoons of olive oil. That being said, there may be more mild cases and maybe you could see if you get some improvement in your migraines if you just stop eating fermented and processed foods.

Another thing you will see on these sites and food lists are a lot of foods that don't actually have any histamine in them called "histamine liberators", which is a meaningless term. It just means: "anything anyone has reported ever reacting to". I found that I do have kind of pseudo-reactions to these foods if I eat them AFTER I eat something with histamine in it. This may because my symptoms (from the histamine) are from vasodilation and the other foods are simply vasodilators or maybe increase NO.

Also, I ordered some of the DAO tablets from a company in the Netherlands. There is a company in the US that makes them but when I tried the they did not work and after reading about the manufacturer, I did not want to deal with them anyway. The ones from the Netherlands DO work, but only up to a point. They help with the equivalent of about 1/2 teaspoon of my olive oil. It does take the edge off but they don't allow me to eat normally.

Best of luck with your migraines. Just don't get too drawn into the histamine intolerance/elimination diet trap.

Jump to this post

Thank you for your reply and the advice. I'm very lucky that I am not as sensitive to the histamines as others seem to be, but I do think that I can reach a sort of 'threshold' level-- what I mean to say is that I can eat some supposedly "high-histamine" foods in limited quantities (a couple of tablespoons of sauerkraut, which I love), but if I eat too many of these and too much in one day, I will have problems. So I guess I'm realizing that it's something I need to be aware of, which I wasn't before.

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One other think that is often overlooked, is that if you are "histamine intolerant" in the sense that you are lacking diamine oxidase (DAO) enzyme, there is no reason in particular that your mast cells would be unstable so the people connecting it with MCAS and mastocytosis and pushing quercetin and other mast cell stabilizers are really muddying the issue. If you go to an allergist because you are having allergic-type reactions to foods, they will do some blood work and measure your serum tryptase which is a pretty good indicator of the stability of your mast cells. It's not really that mysterious. They are checking for mastocytosis and you can find out that way. Also, if your mast cells were not stable you would be having reactions to other things, which I am not. It's really a separate issue.

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I would like to report that my histamine intolerance is rapidly resolving with vitamin B (especially B6) supplementation. Marginal B6 deficiency is hard to diagnose and I think it is likely that I got it from observing a flexitarian diet: A few years ago I decided to cut down on eating meat and only ate it in restaurants. When the pandemic hit I stopped eating in restaurants and my meat consumption would have gone to near zero. I didn't give it a thought. When I began to get infections, the various antibiotic regimens would have depleted it further. This most recent bought followed a course of NSAIDS for a knee injury, as well as antibiotics for a sinus infection.

B6 is a necessary precursor to making DAO, the enzyme that breaks down histamine from food. Many vegetarians will point to a SINGLE study showing that there is no correlation between vegetarian diets and vitamin B6 status. Not only is this only one study (other studies show differently) but it is complex with self-reported dietary claims, and some of the cofactors have low p-values. It definitely shows that B6 status is correlated with use of supplements and dietary intake. That's about it. Whether any one person will get B6 deficiency from not eating meat probably depends on a lot of things; age, sex, menopausal status, and what else they are eating. If you never looked into it ( I never researched it because I was a flexitarian), you might not be eating enough B6.

Anyone who decides to try B6 supplements, please use extreme caution as they are associated with toxicity. I used the lowest amount I could and stopped as soon as I could in favor of eating meat everyday. I still have some residual nighttime symptoms that are manageable with Allegra. It will probably take awhile to get completely better but I am rapidly recovering.

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Another thing I would like to point out is that when my symptoms became so bad that it was obvious I was reacting to foods, I got into a cycle that made it worse: Recommendations for histamine-reduced diets and ways of managing the condition found on the internet all encourage avoidance of the foods that trigger the reactions. That, combined with the intensity of the reactions, got me in a downward B6 spiral: At one point, I could not eat bananas, avocados, fish, or chicken -all foods rich in B6 that would have helped me. Also, a lot of the processed foods that I could not eat are fortified with B vitamins. So it was self-perpetuating.

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Thanks for all the information. I have histamine intolerance, for the past 3 years. I break out in hives. Antihistamines do not help. Once I get into the state of huge hives the only thing that can get me out of it is prednisone.

I take B6 and Saccharomyces Boulardii (the only probiotic that I can tolerate) They are precursors to the DAO enzyme that breaks down histamine.

I also take: Vitamin C, quercetin, bromelain, stinging nettle and NAC. And Ashwagandha for sleeping. These seem to control it a bit.

But: If I eat or drink: wine, vinegar, lemon, orange, fermented foods and chocolate. Or foods containing cinnamon, nutmeg then the hives return.
Today, I was googling and found that a lack of progesterone and too much estrogen can be a cause of histamine intolerance . I am planning to get those numbers checked.
Hope this helps. And wishing you well!
Linda

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