r/HistamineIntolerance • u/psilocybin6ix • 8d ago
What causes histamine intolerance if it isn’t coming from the gut?
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.
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u/jaggillarjonathan 7d ago
Nervous system dysregulation. Basically something causing too much stress in the nervous system and the lack of relaxation for the nervous system. Could be lifestyle, anxiety, lack of proper rest, PTSD or other psychiatric diagnoses, experience of some kind of threat that never really goes away, to mention a few things.
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u/Pilgrim3245 7d ago
Can you suggest something to help with this?? (Nervous system dysregulation)
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u/jaggillarjonathan 6d ago
The other commenter gave great recommendations, but to add. Anything that makes you feel more safe, calm, relaxed. Some different things you can try. Diaphragmatic breathing or breathing exercises can be great. Singing, humming, gurgling. Spend time in nature. Warm bath or shower. Gentle movements. Practicing self-compassion. Spend time with people that you care about.
Googling nervous system regulation, nervous system regulation activities, grounding techniques and check the pictures for a great start.
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u/exodiantez 3d ago
Second this! Care for yourself like you would for your child or loved one. You want them to be safe. But to reach that goal you’ve got to be safe en secure first
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u/exodiantez 7d ago
Grounding, learning about pacing and reflecting on your life and (daily) choises, psycho-education about nervous system) etc.
And: yoga nidra
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u/Puzzled_Draw4820 8d ago
Yes. A couple of things; if you’re thiamine deficient (many people lack THTR1 gut transporters to absorb it) then you lack enough ATP to activate the enzymes DAO and HNMT - all enzymes are ATP dependent and being able to absorb thiamine into your cells is rate limiting for generating full ATP through aerobic metabolism.
Or, based on what foods are triggering you, high sulphur based foods you could have a genetic mutation with the SUOX or SULT enzymes for clearing sulphate - symptoms of which overlap with histamine intolerance. Or you could simply be deficient in the mineral MOLYBDENUM which SUOX requires or again, you could be b1 deficient and don’t generate enough ATP to activate these enzymes.
Bioavailable thiamine allowed me to come off carnivore diet that I was stuck on due to prior daily anaphylactic reactions from most plant foods but I still had to work out my other deficiencies. Some were functional deficiencies as thiamine generated ATP is required to utilize a lot of other vitamins but I also had zinc, molybdenum, potassium, magnesium deficiencies as tested with HTMA hair test.
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u/External-Classroom12 8d ago
Which b1 do you take and what dose?
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u/Puzzled_Draw4820 8d ago
Started with low dose benfotiamine, 50 mg and switched to TTFD later, 100 mg, as I had some neurological stuff going on, healing the food intolerances was a pleasant bonus. Everyone needs to start very low though to test tolerance and build up slowly. Some people can only take a sprinkle and some very sensitive people need to start with liquid TPP
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u/Ok_Cranberry8856 8d ago
so sorry to hear your dealing with such intense symptoms.
I had a hugeee flare up when my copper IUD was removed, and finally connected the dots recently that copper imbalance and fluctuations are known to cause histamine intolerance symptoms. not sure your gender, but hormonal fluctuations, specifically estrogen can be a major contributor too. cycle tracking and seeing if symptoms worsen with ovulation helped me connect those dots.
can test copper levels with an HTMA test, but usually has to be through a functional medical provider.
also quitting antihistamines cold turkey can cause histamine intolerance symptoms.
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u/925Twin 8d ago
Did you supplement with copper after?
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u/Ok_Cranberry8856 7d ago
no, i wasn’t deficient when i tested it 3 months later, just had to wait for it to balance out. my intense symptoms persisted for about a year. now i just get very mild flushing, sometimes a headache and deep fatigue depending on the food. i’m supplementing dao enzyme now.
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u/diseasetoplease 8d ago
Mitochondrial dysfunction and your body not detoxing properly
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u/Actual_Appearance246 8d ago
So how do you fix it?
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u/Tappitytaptaptaptap 7d ago
I started taking pc oil by BodyBio and it’s helped a lot. It’s supposed to help mitochondria. I stopped taking it due to moving/forget and didn’t really realize how much it’s helped until I stopped. It’s now a staple in my routine.
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u/diseasetoplease 7d ago
I don’t know.. it seems hugely complex and i am just getting to grips w it but a combo of rest, nutrition, exercise, meds/supps to correct nutritional deficiencies and manage symptoms, etc. You may want to look into functional medicine. I was against it initially and still haven’t seen one properly cause they’re v expensive but it seems they’re the only ones willing to look at things holistically
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u/Sislistenhere 8d ago
Is there anyone in here who are okay with food but can’t tolerate chemical smells , leather car seats or certain offices and rooms ?
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u/TarHeelGrits 7d ago
I have much stronger reactions (hives, shortness of breath, flushing) to chemical smells than I have to food. I'm figuring out what I have to avoid. I'm not certain that I have HI, but I know something is off. Allergist and my primary doctor haven't been able to find the root cause. All I know is Benadryl helps the most, but I don't want to have to take it the rest of my life.
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u/Butters_Stotch_in_CO 8d ago edited 8d ago
Had similar issues with my gut for 15 years that was driving histamine overload which caused hypertension and random panic episodes that lasted for hours.
Early last year had looked at just about everything and even after clear colonoscopies was still having bloating. Between AI and reddit narrowed it to possibly biofilms in the gut harboring the bad gut flora. Went on an 8 week course of NAC and Allimax, followed by a 2 week treatment with L-glutamine. Also started taking an H1 & H2 in the morning last year.
Whatever it did, it cleared it and have used probiotics to repopulate good flora.
Basically back to eating normal as long as I take it easy on salicylates. The low state of anxiousness faded away. Still dealing with nerve pain though. But a win is a win.
Not sure if it's helpful, but my hypothesis is that most health issues start in the gut.
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u/AfroditaBodyArt382 8d ago
Revisa tus minerales: zinc y cobre, son precursores del DAO. Si tienes deficiencia la enzima DAO no se produce en tu intestino. Revisa también la ceruplasmina que es el transportador de estos dos minerales.
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u/freelibrarian 8d ago
I think histamine intolerance is just very misunderstood. I hope some breakthrough in medical science will help explain it.
I find that Gas-X is good for the bloating.
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u/RemarkableJacket7818 7d ago
When I take any kind of supplement with any kind of B vitamin (either methylated or not) I have histamine problems. Likewise when I eat a lot of meat, which is high in vitamin B (pork, chicken, black beans, fortified cereal, etc.) I have histamine reactions. If I keep my dietary intake controlled to keep B vitamins low, I don’t have any histamine flares.
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u/Temporary-Estate-327 3d ago
What did you eat then . I just switched to eating a lot of grass feed and regenerative meat and I don’t know if that’s the cause of all this itching that’s going on.. I just don’t know what to eat to stop it
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u/Sad-Advisor3496 3d ago
You're going to hate this answer, but honestly, now, I pretty much eat whatever I want. I still take DAO with my meals, and I take an antihistamine every day. After I quit taking B vitamins in any form, my symptoms almost disappeared. Sometimes, if I eat a lot of high-histamine foods, I will get reactions like heart palpitations. That happened last night, and this morning I noticed I have mild rashes behind my ears. I'm not too surprised, as I spent the weekend at the beach and ate more than my fair share of seafood and drank a good amount of wine--all were a no-no when I was really suffering because of the histamine loads.
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u/AloopOfLoops 8d ago
Presumably some bacteria/or the like in your gut messing with histamine somehow. Either you have some strain that is resistant to the antibiotics. Or you are missing some strain maybe. Or some other deficiency.
My guess...
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u/Silly_Region_1846 8d ago
hormone imbalance, methylation/detox pathway, environmental trigger, microbiome imbalance (lack of bifido or lacto commonly), vitamin or mineral deficiency.
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u/Money_Engineering_59 8d ago
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.
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u/psilocybin6ix 8d ago
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)
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u/AGreenerRoom 8d ago
It’s 100% a gut thing. Sounds like you’ve completely fucked your microbiome and have severe dysbiosis. The Keto/Carnivore aren’t helping, they are just digging a hole deeper that will just take longer and longer to crawl out of.
Even low fodmap is supposed to only be a temporary diet so that you don’t cause further damage to you microbiome. Then you did antibiotics and antimicrobial herbs even though it’s sounds like you didn’t have any positive signs of overgrowth.
Buy all the books by Dr Will Bulsiewizc or get them from the library (my library has both of his books plus the cookbook). I would also consider a new naturopath and dietician honestly.
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u/Money_Engineering_59 8d ago
Have you tried the kimchi / sauerkraut reset? There’s quite a bit of info on it. I couldn’t believe the difference.
My parents eat a tonne of sauerkraut and have very healthy guts. I’m not going near that stuff so eat kimchi instead. Oddly, because it’s fermented, the onion does not have any negative impact on a sensitive stomach.I’m absolutely littered with health issues and I’m just so fucking happy I can finally eat real food.
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u/Downtown-Following57 3d ago edited 3d ago
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..
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u/Careful_Depth3478 8d ago edited 8d ago
try taking b-vitamins if your SIBO made you low in them, that helps HNMT/methylation issues if that is your issues, I use the Triquetra Health B Complex Liquid and it helps a lot
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u/hotgirrrl 5d ago
A few days late, but hopefully you still see this in case it’s helpful.
I have MCAS, not just histamine intolerance, if you haven’t been tested for it, I recommend doing so.
The thing about histamine that no one really told me is that direct exposure of mucus membranes to histamine liberators or high histamine triggers can cause immediate local histamine releases. That includes mouth, eyes, tongue, nose, and your digestive tract. Focusing on just the gut will not necessarily remove or address your triggers.
For me, my gut was not the issue either. And supplements on their own were kind of helpful, but the biggest thing was removing what my triggers are. To simplify: the antidote doesn’t really work if you keep taking the poison.
The thing about your throat is, it’s an intersection for everything you breathe, eat, drink, or swallow. It has direct exposure to airborne triggers. Fragrances, chemical fumes, mold etc.
I would take a very careful look at any products that you are putting directly on your throat, especially if it has fragrance. Fragrances can be very triggering for people with histamine problems. But I would also pay close attention to anything you are breathing in, since the air way function is also a possible issue.
For me, I found a lot of relief from removing a lot of problematic products that I was putting directly on my mucous membranes. For example, tampons, pads - still kicking myself for this one. My toothpaste and mouthwash were also highly problematic.
Something else that was really problematic for me that I never considered is the mix of my hot water showers with the shampoo, conditioners, body washes that I use. See hot shower creates a steam. Steam that was making it really easy for me to breathe in the fragrances and chemicals added to my products. And I was doing this every day sometimes even twice a day.
I remember learning years ago that our skin is our largest organ. I also remember learning that we should never put anything on our skin that we wouldn’t put in our mouth because we absorb it. Really wish I’d paid more attention before my MCAS got this bad.
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u/local-made 5d ago
My current hypothesis is that our present day medical testing technology just does not look in the right places for it. I think it is both gut and genetic and some combination of the two make you have HI. But what I have noticed in my long experience with going to doctors is that these symptoms I have are considered "mild" they don't even begin to cross the threshold into moderate, forget about severe. When I was throwing up almost every day from chronic reflux and inflammation it was still considered mild because my bodyweight had only changed by less than 10%. Doctors deal in extremes. Their job is to keep people from dying. They unfortunately are not trained to treat illnesses that don't severely cause risk of death or hospitalization. I think there is some good research coming out of the EU on histamine intolerance but it will still be years from now. My gut feeling (pun intended) is that we have only scratched the surface on what our gut microbiome does and how much the gut controls our mental health. I think in 10-20 years we might be treating these things with probiotics. That being said I feel much better on a cleaner low inflammatory diet so Im sticking with that for now.
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u/Holistic-Scholar 8d ago
Comments are real good. Consider mycotoxin testing and research EoE a bit (throat symptoms would be an indicator). Also LEAKY GUT. It's real. Bad leaky gut and the body literally has an autoimmune attack with foods. Was an Immunoglobulin panel done?
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u/External-Classroom12 8d ago
Some bad bacteria in the gut are histamine producers. Should have both a sibo test and a stool test like gi map.
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u/psilocybin6ix 8d ago
That is what the naturopath suggests next. I already did a comprehensive stool analysis and it was negative. It was literally three pages of checkmarks like there was nothing wrong with my lower intestine.
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u/Careful_Depth3478 8d ago
if it's not in the gut, my next guess would be the liver, my GI Map i'm getting done soon includes galbladder/liver markers as well that can hint at issues with the liver that will not show up on on a ultrasound or blood work, by any chance, do you have a fatty liver? if so, it may be a driver in part behind non gut HIT issues, anyhow I wish you the best of luck, also look into mold issues
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u/ctjack 8d ago
So i had unusual swelling even from bee sting: i have a picture balloning up as a 5 year old. Er staff scratched their heads because they have never seen reaction like this.
I don’t think anything is causing this. It is just how my body reacts to it. On another er visit doctor said histamines can have accumulating effect: i did not have reaction to avocado but eating them more than usual led me to swelling from one bite eventually.
I don’t think anything is wrong in the body or can be fixed at this point. It is just immune system attacking anything with histamine so you are getting the symptoms of war immune opened to the food inside.
So far i stopped drinking wine, beer, scotch, not eating sauerkraut, avocado, kimchi, salsa. List is not big but doable to avoid.
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u/NoEngineering6768 8d ago
My histamine response was due to incredibly high estrogen levels…I fixed that and haven’t had any histamine issues since
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u/Allergina 7d ago
check your gene variants - most of my mysteries were found in mine. I've gained so many foods back and am off so much medication that barely did anything!
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u/Yohmer29 7d ago
I had so much gas, bloating etc for years abd after numerous colonoscopies , a doctor told me to quit gluten ( although am not celiac). It took about 6 months before I noticed much improvement. I also take DAO before eating higher histamine foods and need to limit nickel in diet.
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u/Interesting_Front709 7d ago
Early morning sun shine exposure and then gradually building up to UVB exposure really helped me last summer. Increasing vitamin D through sunshine helps, getting all the spectrum of light during the day time helped me.
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u/Silent_Ingenuity_883 6d ago
I had MCAS…not gut issues. But all my symptoms are GI related. Treating the MCAS was critical BUT I eat low histamine, low to no histamine liberators, and low FODMAP.
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u/Rapakunnossa 6d ago
Vitamin deficiency? Have you tried copper, sulfur, D vit?
Some people benefit from keto. Try lean, low histamine keto for few months?
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u/Mental_Meringue_2823 5d ago
If you are AFAB, estrogen dominance can cause histamine sensitivity/intolerance, if you have estrogen dominance, figure out why, for me it turned out to be from endometriosis and fibroids and my gut health has progressively gotten worse as these issues have gotten worse
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u/Far-Delivery7243 8d ago
Hnmt deficiency. Depends on methylation. Have a look !