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humanefly OP t1_iy0jnl6 wrote

TLDR: low histamine diet reduces bad bacteria that generate histamine over time

Purely anecdotal: I appreciate that I am allowed to describe my experience under this comment. I also appreciate that my experience has very low value as evidence on this sub, and that is how it should be.

I was reading the r/covidlonghaulers group since the beginning of the pandemic, and I noticed that a sub group of long haulers had symptoms which matched my own. As the months rolled by, it became apparent that many of these people concluded that Covid had caused them to become histamine intolerant. I realized that many viruses can result in acquired histamine intolerance. I'm alcohol intolerant, and I knew that cheddar (aged) cheese was a trigger; these are both signs of potential histamine intolerance (I can eat mozzarella as it's not aged). So I switched to a very strict low histamine diet, and my IBS symptoms were cured within about two weeks.

For around two decades prior I had frequent bloating, diarrhea, constipation alternating with diahrea, nausea, and an increasingly strong feeling of gastroparesis.

After switching diets, Very very slowly many of my other symptoms improved; my dry itchy skin slowly normalized. My tense muscles felt more naturally relaxed; prior to that nothing worked except chemical muscle relaxers. My constant nausea and constant headache slowly improved; I had less migraines. I've had chronic migraine for around a quarter century; I found migraines lessening in frequency, becoming less severe; I was able to reduce my migraine mediction. Without medication, my chronic frequent migraines included: light, sounds and smell hypersensitivity, blinding pain, severe vomiting, partial temporary blindiness (rarely, with scintillating scotoma), followed by mild euphoria and then a deep sleep for 12 hours. I found my quality of sleep improved; I have more energy; my muscles are not always kind of sore anymore. and so on. I've reached out to schedule an appointment with an immunologist but I've been waiting months, it will probably take another few months, hopefully they can shed more light.

https://en.wikipedia.org/wiki/Histamine_intolerance#Symptoms

This is an unlikely problem to have. All other possibilities should be ruled out first. If you can drink red wine, you're not histamine intolerant.

Estimates of levels of histamine intolerance in the population range from around 1-3%.

My experience with the medical system was very frustrating because my goal in interactions with the medical system was always to seek out root cause of migraines, as this was how my problems started. In almost 5 decades of interaction with the medical system, I could not appear to find a single medical practitioner who could figure out root cause; in fact, most were unwilling to have a conversation about it. They would say things like: "Well these are your symptoms, and statistically this is the best medication for those symptoms."

From my perspective, it has always seemed as if I had a nerve somehow trapped or constricted in my neck, which somehow triggered muscle tension and migraine. This was not something that any doctor seemed interested in discussing or pursuing, although there are some US doctors (I'm in Canada) who offer a nerve operation which I think maybe removes some muscle or material surrounding a section of the nerve, my neurologists opined that this was snake oil.

My understanding has evolved; I think it could be that HI induces muscle tension; over a lifetime this can have a result of a kind of constant low grade traction or pressure on the neck and spine, which can cause some constant pressure on the discs or compression. It could be that this compression results in some kind of interference with the nerves that run through the neck and traps into the body or arm but this is all purely speculation and conjecture on my part.

My body was actually telling me that what I was eating, was poison for me. The healthier I ate, the sicker I got.

Peas, spinach, tomatoes, soybeans, beans, tofu, avocado, bananas, home made sauerkraut, kefirs, kombucha, vinegar I was eating all of the healthy foods, but these are all super extremely high in histamine, so the healthier I ate, the sicker I got.

Intense exercise also raises histamine levels, so the harder I exercised, the sicker I got.

I stopped eating foods high in histamine around six months ago. In that time I've lowered my migraine meds, had less migraines, and dropped 20 pounds. It turns out I'm not such a fat guy after all: histamine intolerance causes tissues to swell and retain water, and I was bloated all the time with a massive gut, so I looked morbidly obese; I looked like I was going to give birth. Within weeks of adopting the low histamine diet, I deflated: my face and body were no longer bloated and I started losing weight, with no effort. I'm at the six month mark and it looks like I'm still losing weight at the rate of 1lb per month or so. I need to buy new jeans.

It might be possible that I'm misunderstanding something, that my body naturally healed itself in some way, or that by adopting a low histamine diet I also adopted a diet low in something that I'm allergic to, which resulted in my symptoms being greatly reduced but I don't believe that to be the case. It may be possible I'm intolerant to other -amines.

I believe that I have been histamine intolerant for some other root cause, since I was a small child, and became very very slowly increasingly more intolerant as I aged.

It is not yet clear what root cause is. My search continues.

Possibilities may involve:

  • insuffient bile or stomach acid, which interferes with histamine metabolism

  • inflammation or increased permeability of the gut, higher histamine absorption

  • insufficient DAO production an enzyme for histamine processing

  • vagus nerve damage

  • possibly some kind of damage or inability in the liver or kidneys which doesn't show up on a regular blood checkup, I dunno really

I am sorry for writing such a bible. I did not intend to,

IAMNOTADR

Onwards

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thecity9 t1_iy13rl3 wrote

Have you ever had an MRI of your brain?? I had crazy symptoms, migraines included, for years. My neurologist was just a drug pusher so after my headaches worsened I went to an ENT thinking I had a neck injury or a brain fluid leak. I knew deep down there was a root cause for symptoms. The ENT ordered an MRI, and boom, brain tumor.

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humanefly OP t1_iy15c2m wrote

oh god I just stalked your history for a minute and I'm so sorry it sounds horrible. I'm glad you're able to talk about it

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gingerkham t1_iy20tv7 wrote

Pretty much same story for me. Years of crazy symptoms. Got an MRI. Ended up being multiple sclerosis…

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humanefly OP t1_iy2mxmz wrote

Sometimes I fear that I'll discover this; I try not to think of it and there are so many other things to check for that it hasn't made the list. I think I'm a little too old to discover that (I hope). I had an odd new symptom this week where I have a difficult to reproduce sensation of pain and weakness when I move my head and arm in a specific way. I'm hoping I just pulled a really strange muscle

I'm sorry for your suffering, stranger. Life is suffering for many of the people, much of the time. I have many mantras. "If I am suffering, I know I am alive because life is suffering." and "This too shall pass." get heavily used.

Onwards

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medicalstuff2021 t1_iy1qa6i wrote

You almost certainly have SIBO (the root cause of most or all IBS). The fact that you have alternating diarrhea and constipation means that you will likely test positive for both hydrogen and methane with a lactulose breath test, meaning overgrowth of both bacteria and archaea in the small intestine. All of the things you mention are related to that. Vagus nerve issues can contribute to the cleansing of the small intestine, as would Insufficient bile or stomach acid (I got it 10 years ago after a doctor put me on excessive PPIs which greatly reduced my stomach acid for a prolonged period).

It is possible that your dietary changes put you on a low FODMAP diet which is part of dealing with SIBO, though it's not a cure by itself.

What is super interesting to me, as someone with SIBO and also histamine issues, is that going on a low histamine diet reduced dysbiosis. This suggests to me that histamine itself might worsen SIBO, unless they were coincidentally going on a lower FODMAP diet. However, many of the foods restricted on a low histamine diet are not restricted on a low FODMAP diet. This study may be useful for me.

Incidentally, you can also reduce the issues with antibiotics, herbal antibiotics, or an elemental diet, though the improvement often isn't permanent if gut motility is Insufficient.

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humanefly OP t1_iy1rrkv wrote

> The fact that you have alternating diarrhea and constipation means that you will likely test positive for both hydrogen and methane with a lactulose breath test, meaning overgrowth of both bacteria and archaea in the small intestine. All of the things you mention are related to that.

That might be possible, but all digestive symptoms disappeared pretty much completely within two weeks of a low histamine diet.

My diet does not appear to be FODMAP although there might be a little bit of overlap.

I find ginger super helpful, I drink ginger tea, put ginger in my food, add ginger powder to my soup, if I think I might get a migraine sometimes I'll take Gravol ginger extract. It naturally contains quercetin which is an antihistamine. Some studies suggest ginger can be as effective as some antihistamines for allergies

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yondermeadow t1_iy0u814 wrote

Appreciate your post and I know someone who developed a histamine thing after covid.

The link to the longhaulers group doesn’t work tho.

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Jetztinberlin t1_iy1peee wrote

I'll just add to your excellent and thorough comment that many dietary sensitivities that cause inflammation can behave similarly - so if, as the parent comment says, your triggers don't seem to be histamine-related, but symptoms are similar, it's possible you simply have a different food issue.

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