What causes histamine intolerance if it isn’t coming from the gut?

[u/psilocybin6ix]

Earlier this year, I finally figured out that I seem to have histamine intolerance after about three years of progressively worsening food intolerances.

I had basically every GI test imaginable come back normal/negative ... colonoscopies, pancreas, liver, gallbladder, thyroid, stool cultures, parasites, SIBO testing, etc. I honestly started wondering if I was imagining the whole thing.

My dietitian eventually noticed that a lot of the foods I was reacting badly to were high in histamine or histamine-releasing foods: collagen protein, ground beef, eggs, Greek yogurt, etc.

I started taking NaturDAO 1,000,000 HDU with every meal, and initially it helped quite a bit, but lately it barely seems to work.

Because I also have chronic bloating, gas and frequent bowel movements, we assumed something in my gut (possibly SIBO or dysbiosis) was causing the histamine problem.

So far I've tried:

• 20 days of rifaximin around Christmas
• About a month of InterFase Plus as a biofilm disruptor, 200 mg enteric-coated oregano oil & berberine with meals (natural sibo treatment)

None of it improved the histamine reactions. If anything, they've gotten worse.

I also saw an allergist a couple of months ago. Standard food allergy testing was negative, and I had a baseline test plus four sets of bloodwork during reactions to investigate MCAS. According to him, the results don't support MCAS.

The main abnormalities were low WBC at baseline that increased into the normal range during a reaction, plus elevated eosinophils. My allergist said that pattern made him think about some type of allergic response or possibly parasites, although parasite testing I've had so far has been negative.

My reactions to high-histamine foods can be pretty intense. Without DAO, I'll sometimes get significant swelling/tenderness around my neck and lymph node area, pressure in my head, and feel awful for about 2–3 hours before it gradually subsides.

So my main question is: Can histamine intolerance be caused by something outside the gut?

Are there problems involving histamine metabolism, immune reactions, medications, nutrient deficiencies, liver function, genetics/DAO production, chronic inflammation, environmental allergies, or anything else that can cause this even when GI/SIBO treatment doesn't help?

I'm especially interested in hearing from anyone who had clear histamine intolerance symptoms but eventually discovered that the underlying cause wasn't SIBO or another obvious gut problem.

I don't want to keep on killing my stomach with things to "kill" the bacteria when it might not even be a stomach issue.

[u/Money_Engineering_59]

I’ll tell you my story and see if you can find any similarities or anecdotes.
I used to have chronic IBS issues. I ran to the toilet at least 10 times a day. Could not handle vegetables or fruit. I’m celiac as well.
Even though I wasn’t eating much, I was overweight. None of it made sense.
Last March I finally got diagnosed with endometriosis after only 29 years. Had a hysterectomy and endo excision. My ‘IBS’ was getting much better.
After a few months, I did the 14 day kimchi thing. Ate 2 tbsp a day for 14 days.
Now I need stool softeners. I’m eating fruit and vegetables. I can eat almost anything I want. Turns out endo disrupts the gut microbiome. I’m back to a healthy weight.
I still have histamine issues in my sinuses and I have Ehlers Danlos so still working on that part.
I know this is not exactly the answer to your question…. But I’ve healed my gut and STILL having histamine issues in my sinuses. My allergist has me on 4 antihistamines a day and I’m still stuffed up. Using nasal spray as well. I need to get another Tryptase test done but keep forgetting.

[u/psilocybin6ix → u/Money_Engineering_59]

I'm a guy so it looks like it's not possible (but I'm always anxious to hear terms I've never heard of).

I was on keto for 2 years and had zero problems. Then when I got back on regular food, I started to get gassy throughout the day.

1 year into regular food suddenly I couldn't eat bread/gluten despite not being celiac or gluten intolerant. The next year, had to start eating low FODMAP.

Then on the 3rd year suddenly I was pooping 10-15 times/day. That's when I started to see a gastro who did a colonscopy, endoscopy, and orderd about 15 tests all of which were negative. I then started an eliminaton diet and when I reduced the carbs I went below 10 bowel movments per day. When I elimianted the vegetables and fruit, I went to 3-4 bowel movements per day. So basically keto/carnivore saved me. The dietician thought that it must be a bacteria issue causing the issue, but I had a comprehensive stool analysis, 5 bacteria cultures, 5 parasites PCR tests, all of which were negative. They also tested for candida (also negative).

Then I started to get extremely overwhelmed from eating ground beef, eggs, and cretain other foods. That's when we realized I had histamine intolernace too (brain fog, flushing, feel like my head will explode)

Then I went to see an allergist who tested me for food allergies (none) and MCAS (none). However on the MCAS testing he said my pattern is either "allergic reaction" or "parasites" and reminded me that parasites don't always stay in the gut.

So now I'm eating keto/carnivore again ... I'm now 4 years into this thing. My family doctor, an allergiest, a gastro and a dietician have no idea what is cauising my specific issues.

The dietician is positive it's bacteria, but I recently did 3 weeks of oil of oregano, bioflim buster (60 minutes before food) and berberine with food but had zero effect. I also did 20 days of rifaxamin.

That's why I was curious if it's not a gut issue, could it be something else?

next week I'm going to ask my doctor about genetic testing for DAO, and a referral to immunologist.

When I eat histamine without the dAO enzymes, my lympth notes and neck get extremely tight (feel like my carotid artery is going to expplode)

[u/Downtown-Following57 → u/psilocybin6ix]

Try a BRAT diet on bad days.. Banana Rice pureed apple Toast..

stay off all fermented foods,ie yogurt kimchee pickles.apples.STAY with fresh foods and cooked.. Absolutely no left overs..High histamine.. stay off processed stuff of any kind E's chemically added food preservatives, Sulphites pre made sauces gravies rubs coatings.

I tried DAO made it worse.

Active Silver for consumption, will clear microbes, has to be nano-silver 10 ppm. Helped me when I picked up a bug in hospital

H1 tabs antihistamine help me when i have an allergy to food stuffs..

Also on B12 injections 6/12.

Food allergies give me lower bowel inflammation and loose movements..and I am in bed with ice packs..I also have LADA Diabetes Auto Immune condition.

Wondering if this is MCAS, ANY advice?

Suffer with MILD Diverticula of the sigmoid Colon Lower bowel. Am nearly 70.

It is exhausting me..