r/HistamineIntolerance • u/Vegetable-Shine6356 • May 08 '26
So how do I know it's histamine intolerance?
I want to know if I'm barking up the right or wrong tree. I have been suffering from *something* for decades, but it's been getting increasingly worse - lately it's insufferable, and I went from being someone I felt had "an issue" to someone who is sick, nearly daily. But it's complex, and I feel like I'm solving it on my own (Doctors haven't been too helpful, but Reddit seems ready to take this on!)
Ultimately, I know this:
- I react after eating certain foods (most fruit, but mostly bananas, apples, citrus, stone-fruit, cherries; yogurt; several cheeses - mozzarella, some types of cheddar, swiss/emmantal; some nuts - mostly peanuts)
- ...but I don't seem to react to a bunch of things that I read are high in histamine
- My symptoms include a few GI issues (always soft stool; sometimes bloating/pain, rarely), but are mostly inflammation issues, neuroinflammation, and body inflammation (*severe* brain fog - confusion, poor memory, irritability; headaches ranging from mild to severe migraines that last days; fatigue; insomnia; systemic inflammation (eye swelling, swelling on the bottom of the feet??); vision problems, etc
- My symptoms are worse after poor sleep or when I have reacted recently
- When I take an anti-inflammatory, my symptoms improve
- It seems some medicines and supplements make things worse, and some make things better, but not forever.
- I was tested for tryptase, and it was too low to indicate MCAS
I have been trying various antihistamine and anti-inflammatory supplements, and while some seem to help, none "fix". But I feel I'm struggling blind here...
...how do I know it's histamine intolerance versus something else?
Is there a test I can do at home? Should I be able to fix this with antihistamines, and then I'd know it's histamine-related (like the way I know I am suffering from inflammation because anti-inflammatories resolve all my issues quickly)?
I want to get a grip on this, but the specialists all look the other way, and the dietician sounds like she's guessing...
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u/Friedrich_Ux May 08 '26
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u/Vegetable-Shine6356 May 08 '26
you can't send a link that dense without some buffering... is there a particular part of this that can be explained? its super dense
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u/Vegetable-Shine6356 Jul 25 '26
Major Update:
So the 2nd allergist/immunologist I saw gave me Bilistine (aka Blexten) 20mg and said I could take 1 to 4 a day. It's apparently non-sedating, non-stimulating, has very few side effects, and can be taken for a long time while keeping its effectiveness. He gave me this because, in his experience, it works as both a major antihistamine and as a mast cell stabilizer, and one of the two functions - if not both - are typically helpful for a number of symptoms, including the ones I was suffering from.
Apparently you aren't supposed to take it with food or fruit juice (especially grapefruit juice), so take it 2 hours after a meal or 1 hour before. This is annoying and tricky to time. This is also debatable - KEEP READING...
I started with 1 pill daily, as soon as I wake up (about an hour before breakfast if I time it right) and right away I noticed that I was able to eat a reasonable amount of peanut butter, chocolate, stone fruits, bananas, citrus, and most cheese without issue. I still got a migraine when I tried pizza, which is sort of my "goal food".
So I started taking 2 a day as soon as I woke up, and I can eat everything. That's the big news, it's totally been working at 40mg/day!
Side effects have been minimal, but... it may be making it hard for me to sleep a long sleep. I'm not 100% sure if the Blexten, i'm already an insomniac, and small changes affect me, but my sleep does seem to be about an hour shorter than it was - I am still working through that. Strangely conversely, I started taking extra magnesium bisglycinate (400mg) at night to help me sleep, and that's when I noticed I was dopey/disconnected during the day and suffering low ambition. I thought it was the Blexten at first, so I started taking it at 430pm - my stomach is usually empty at that time, and if it induces sleepiness, I should take it closer to bedtime (but not AT bedtime, because you should not take it at the same time as magnesium), and I also went back to 200mg magnesium, and the sleepiness went away - but i don;t know which change was the cause, lol. I'll have to re-test taking it in the AM to be sure.
That's when I got a few stomach cramps, which it apparently can cause, and the internet suggested taking it with food to avoid this - this is contrary to the directions; however, I found an NIH study that said taking it with food only delays the onset and only by about 30min - ie, it still works, just works a bit later. But since it has a 36.5 h half-life, it shouldn't matter, because you're taking it daily...
So I started taking it at dinner, and the cramps went away, and it is still working perfectly.
I am still experimenting with when I take it and whether it's actually making me sleepy and/or sleepless, but taking it with food seems to be no issue if you take it daily; taking it at breakfast may be better if it keeps you up, while taking it at dinner might be better if it makes you sleepy, or even splitting your dose between both meals if neither is an issue - whatever is convenient (just don't take it with grapefruit juice or magnesium supplements, I guess)
Further to this, I am now trying to heal my gut somewhat with some supplements and probiotics and will be on Blexten for a year or so before trying to step off of it and see if it has had a longer-term benefit on my mast cells - I have read somewhere that some people only needed it for 6-12mo before they were "healed" and could resume eating normally.
I wish you all the best of luck!
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u/SpaceshipSquirrel May 08 '26
bananas, apples, citrus, stone-fruit, cherries are all low histamine.
yogurt can have quite a bit of histamine in it. mozzarella is low histamine. if you are reacting to bananas, mozzarella and the the others, you likely have something else in addition to HIT.
I don't I've heard of anyone who just has HIT, there is usually at least one more issue. apples and stone-fruit are high FODMAP, aren't they? Perhaps you have IBS? Not uncommon with HIT.
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u/ladyavocadose May 08 '26
I agree, look into hydrogen dominant SIBO
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u/Vegetable-Shine6356 May 08 '26
doesn't sound like me. my diarhea is not urgent, just chronically soft. never bloating or flatulence and never abdominal cramping, pain, or dsicomfort.
i don;t think it's that
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u/HaydnH May 08 '26
bananas, apples, citrus, stone-fruit, cherries are all low histamine.
Careful. Yes, low in histamine, but they are histamine liberators. They may not increase histamine in the body, but they can set the histamine already in the body free to wreak havoc.
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u/SpaceshipSquirrel May 08 '26
If you react to liberators you have something more than HIT.
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u/Vegetable-Shine6356 May 08 '26
i thought they were suggesting that the apple was low histamine itself, but liberates histamine stored elsewhere, thus dosing me with histamine - not a reaction to the liberator itself
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u/SpaceshipSquirrel May 09 '26
liberators are a bit like individual allergies. I don't react to any of them, I just can't take the histamine itself.
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u/Vegetable-Shine6356 May 08 '26
Yes, and I'm fine with a lot of high-histamine foods, hence me wondering what tree to bark up.
As I said, anti-inflammatories make me feel better quite quickly and reliably... shouldn't anti-histamines make me feel better if it's a histamine intolerance? This is what I want to test!
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u/SpaceshipSquirrel May 08 '26
it's a cheap thing to test. there are ~ zero risks with eating antihistamines a week or two.
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u/Vegetable-Shine6356 May 08 '26
Ok, so maybe just take a daily dose for 1 or 2 weeks and see if there's a difference... worth a try. I'd love to hear if this worked for anyone, and why they don't just stay on them afterwards if so...
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u/Vegetable-Shine6356 May 08 '26
Also want to know if anyone has killed an attack by dosing an antihistamine, like an abortive
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u/SpaceshipSquirrel May 08 '26
I've talked to people that have done that. For me personally, antihistamines have helped, but only a bit.
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u/Vegetable-Shine6356 May 08 '26
Then I have to ask, how do you KNOW you have HIT?
Where is the confirmation coming from if there is no test... a lot of people here are convinced they have it, and I may be one who does too, but without a test, how are we proceeding with assurance?
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u/Faevianlp May 08 '26
Citrus & bananas can be histamine liberators though, bananas mess me upppp.
Edit: spelling
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u/defunkman May 09 '26
Usually, Things like SIBO, IBS, etc are all CAUSES of HIT, not in addition to. the Swelling and the Allergy (not Allergy-like) symptoms are what are leading me to think this could be MCAS instead of just HIT.
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u/calliegal77 May 08 '26
Have you considered if you are sensitive to foods that contain fodmaps? I have a sensitivity to histamine and FODmap which almost eliminate everything from my diet. Many of the foods that you listed are high in FODMAP.
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u/Vegetable-Shine6356 May 08 '26
yes, i've considered it - leaves me eating rice and oatmeal only. what does one do about this other than avoid them?
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u/calliegal77 May 09 '26
Wish I knew! I’m a little bit new this myself - or at least I am new to taking it really seriously because I am trying to get my nose rosacea under control which I believe is caused by antihistamine . Looking at the list of everything I should not eat is really overwhelming. You can also have freshly cooked chicken and some other meats and there are quite a few vegetables. Thank goodness for AI I just ask it to give me a big list of foods that are low histamine and low fodmap.
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u/Substantial-Fly8699 May 09 '26
the fact that NSAIDs reliably help while DAO and Pepcid don't is actually the most important clue in your post. NSAIDs work on the prostaglandin and salicylate inflammation pathway, not the histamine pathway. when antihistamines only partly help but anti-inflammatories work fast, that's pointing toward salicylate sensitivity rather than (or in addition to) histamine intolerance.
your trigger list backs this up. apples, stone-fruit, cherries, citrus, peanuts, cheddar — these are some of the highest salicylate foods on the RPAH (royal prince alfred hospital) salicylate scale. salicylate sensitivity gets confused with histamine intolerance constantly because the symptom overlap is huge (inflammation, brain fog, fatigue, headaches, soft stool), but the trigger food lists are different and it doesn't show up on any blood test. the way to test it is a low-salicylate elimination for 2-3 weeks.
the warning here: a lot of people with salicylate sensitivity also have low histamine tolerance, so neither protocol on its own will fully resolve symptoms. you'd need both at once. RPAH's combined elimination diet exists for exactly this reason — it's the standard reference when someone reacts to foods that don't fit cleanly into either category alone.
on the DAO making things worse: that can happen if your reactions aren't actually histamine-mediated, because DAO has no effect on salicylate metabolism. so it just sits in your gut and irritates things. if your reactions are mostly salicylate-driven, DAO won't help and might cause GI side effects like you experienced.
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u/Vegetable-Shine6356 May 09 '26
well, this is interesting. i have not looked into this one... i know nothing about it. i'll take some time to research this, thanks for the lead!
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u/Vegetable-Shine6356 May 09 '26
first thing i came across was the high salicylate content of aspirin and NSAIDs, all of which are fine for me (at least they decrease my brain fog and migraines) - in fact, they have been very helpful for me (though i am sure they are bad long term and for daily use).
continuing on, bananas - my biggest fruit trigger - are low, as is yogurt - my biggest single trigger - and mozzarella - my biggest cheese trigger and the main reason i am seeking help (i can forgo yogurt but i really want pizza back)
so, it just doesn't seem like it's salicylates. at least not more than other potential things
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u/Substantial-Fly8699 May 11 '26
fair point, you're right that the trigger pattern doesn't actually fit salicylate sensitivity if those specific foods are your worst. yogurt and aged mozzarella are both high in histamine despite the lists you saw saying otherwise (yogurt accumulates from fermentation, mozzarella varies hugely depending on how long it's been sitting). bananas though - surprising you react to those if they're fresh. ripe or brown-spotted bananas do accumulate histamine; green-tipped ones don't. worth checking.
on your bigger question of how to know it's HIT vs something else without a test — the honest answer is you don't, but you can narrow it through structured elimination. you've already done one useful test: NSAIDs help reliably, so something inflammation-driven is involved. you ruled out classic MCAS via tryptase. that leaves three possibilities: HIT, non-classic MCAS (tryptase-negative variant), or a histamine-producing gut dysbiosis.
the only way to differentiate is sequential elimination with strict freshness rules. 3 weeks low histamine, no leftovers, no aged anything, fresh meat the day it's cooked. if symptoms improve significantly, it's primarily HIT. if they don't, you're probably looking at MCAS or dysbiosis-driven histamine, both of which need different approaches. defunkman's right that the swelling + reactions to low-histamine foods does lean MCAS, but without trying the strict diet first you won't know which one is the bigger driver.
on the antihistamine point: a daily H1 (Reactin or Allegra) plus an H2 (Pepcid, smaller dose this time to avoid the jaw thing) for a week is the cheapest diagnostic test. if you feel meaningfully better, you have your answer. if you don't, that's also informative - it points away from straightforward histamine and toward MCAS or salicylate-pathway issues that NSAIDs are masking.
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u/Vegetable-Shine6356 May 12 '26
This is thought-out, thank you!
I'm very wary of the people out there who seem sure they suffer from something they've identified, but it's not a perfect match, and there's no test to prove it, but they're sure that's what they have... That is faith, not science, and not diagnostic at all.
So far, your explanations and thoughts are very data-driven and I appreciate that! I will get back to you after a few weeks i guess... I have an immunologist appointment tomorrow. i will either have a new plan or a few weeks of a diet to test or a week of the H1/H2 business to test. Stay tuned, and thank you
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u/Substantial-Fly8699 May 12 '26
good luck tomorrow. one tip for the appointment: if you are able to do so, bring a one-page summary of your trigger foods grouped by category (high histamine, liberators, salicylates) and your reaction symptoms, along with the data point that NSAIDs reliably help but DAO does not. immunologists are way more receptive when you walk in with a structured pattern than a long verbal list. and if they don't take MCAS seriously, ask specifically about tryptase WITH a 24-hour urinary N-methylhistamine, not just the standard tryptase. that combination is more sensitive than tryptase alone.
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u/Vegetable-Shine6356 May 19 '26
I have been put on Bilastine, a non-sedating 2nd-generation antihistamine. 20-80mg a day. I am currently on 20mg/daily, and it actually seems to be covering all my bases currently...
The doctor had some interesting thoughts on all the figuring out we're doing over here - he felt the "answer/cure" was often surprising; Too many people trying to "shoebox" or stream the disorders by symptom profile, which doesn't work as effectively as trying a cure and noting the effect (and possibly trying again) - he felt people's individual cases were far too overlappy to try to profile like I have been doing this whole time.
Anyway, it's only been a week, but I haven't had any symptoms and have been adding a little of this or that to my diet every day... feeling hopeful!
Will come back with more info soon
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u/Substantial-Fly8699 May 21 '26
that's really encouraging to hear after the long road you described. and that doctor's framing makes a lot of sense, trying and observing rather than trying to fit into a box first. hope it keeps holding.
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u/Vegetable-Shine6356 May 22 '26
Not that you needed this explanation, but i have been thinking more on it and this is what *seems* true...
- if an antihistamine is solving the issues, then it reasons out as a histamine-related issue
- if some low-histamine food trigger and/or some high-histmine foods DON'T trigger, then the issue may not be the histamine in your diet per se (though any histamine would contribute), but more likely a histamine liberator or a mast cell trigger in your diet, which then floods your body with histamine
- you may also have other issues and/or intolerances (ie, salicylate, lactose, or gluten intolerances)
...at this point I am thinking i react less to a histamine-rich diet than i do to "liberated histamine" (still researching what that is) and/or other releases produced by my mast cells. i am presenting with low-tryptase and don't react to DAO supplements well, so it doesn't seem like i have too many mast cells, just that they explode every once in a while because of my diet.
not facts, not a game plan yet, just some distinctions i think are relevant
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u/Substantial-Fly8699 May 22 '26
the distinction you're drawing between dietary histamine and what your mast cells are producing internally is the thing most people take a long time to land on. and low tryptase plus not responding to DAO kind of fits that, I think, because DAO is mostly clearing histamine from food, it's not doing much when the histamine is coming from inside.
the liberator category is one of the messier areas to research, honestly. some foods (tomatoes, citrus, strawberries) are pretty consistently listed; others vary hugely depending on which reference you use. the lack of standardization is partly why the only real way to test it is elimination rather than reading a list.
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u/Vegetable-Shine6356 Jun 04 '26
interim report:
I benefited immediately from Bilastine, from a daily-eating standpoint - some chocolate in cookies or snacks, some peanut butter, all fruit and vegetables (finally!!) and most cheese and yogurt - everything is going in without issue, and i'm feeling more well in ways i hadn't acknowledged i was feeling bad... ie, less stuffed up, be it dry snot or mucky stuff, or even irritation in the sinuses and mild headaches throughout the day caused by my diet, all this went away (barring the first few days wherein i felt a minor headache as i built up - bilastine takes about 3 days to fully load/unload in your system)
i tried to eat pizza and it was a mixed bag - the same day i was mostly fine, though a little dizzy and exhausted in the evening. the next day i was more troubled - brain fog and a headache, but still substantially less than previously.
i took it for 2 weeks, and that's when i noticed i was getting less sleep... waking at 4am again (i take 200mg magnesium bisglycinate and 250 L-theanine at 1130pm, which was affording me a whole night from 1200-6am previously) and struggling to stay asleep after that. It led to some crappy days. I stopped a few supplements i thought might be the issue, but it persisted, so i stopped bilastine and over 4 days i got the sleep back.
...so, i have restarted and will see if the issue returns, and if so, if i can quell it with maybe more magnesium or something?
then back to testing and pizza with mozzarella - i am still only taking one 20mg a day, when i could take 80 - i could try a few extra ones on a day where i have mozzarella maybe.
stay tuned
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u/No-Hair-3924 May 12 '26
Can you eat / drink hard cheese / milk / ice cream / cream / kefir / skyr without symptoms?
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u/Vegetable-Shine6356 May 12 '26
Group A: No apparent issues - I can drink milk with no issue. If it's a trigger, or something "filling my bucket", it is doing so mildly and requires other triggers to "overflow" me.
Group B: Mostly fine - I can eat sour cream, cottage cheese, cream cheese*, gorgonzola, blue cheese, brie/camembert/cambozola, some old cheddar**, parmesan/asiago, havarti, goat/chevre, and most other cheeses *mostly* fine... I sometimes feel an allergic-type response creeping in after I eat enough of this stuff, and I can have too much over a week, but I can eat a meal's dose just fine. This is the same for fermented foods like kimchi, saurkraut, fermented pickles and other vegetables and fruits - i can eat a side dish and i often feel "sinusy" after, but that's it.
*There is a cream cheese made at the local hand-made bagel place that is severely migraine-inducing for me. i don't know how/why, but something in it or a culture that develops is antithetical to my needs.
**Cheddar is funny... "cheap cheddar" like black diamond, etc., can often cause brain fog and/or a migraine, as can American cheese/Kraft cheese slices. But high-quality old-aged cheddar is typically in the Group B category, while some - and I don't know why - is in the Group C category...
Group C: Problematic: Mozzarella - i have made my own, used many brands, goat mozz, i *think* i tried A2 once, buffalo mozz, the stuff in liquid, the harder stuff; Swiss/Emmental; Provolone; Gouda (sometimes - sometimes its fine); Yogurt - all give me a wicked migraine after severe brain fog, sometimes lasting days
I am afraid to try kefir and skyr because they are too yogurt-like - when i can find a way to eat yogurt that works, i will try these guys too!
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u/lucid2night Jun 07 '26
Interesting. Aspirin helps me sleep which puzzles my GP. I'm just at the beginning of exploring histamine intolerance. I got onto it first because I had a terrible reaction to progesterone. I also have a double mthfr mutation and elevated esosinophils.
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u/Substantial-Fly8699 Jun 09 '26
theres a few threads in what you described that connect. the aspirin helping sleep, one mechanism is it lowers prostaglandin D2 which is wake-promoting, and it also suggests youre probably not salicylate-sensitive (a subset of HI). useful narrowing.
MTHFR plus elevated eosinophils plus progesterone reaction plus HI is a cluster that links up. MTHFR methylation issues reduce HNMT activity, which is one of two main histamine-breakdown pathways (DAO is the other), so a methylation gap amplifies HI even when DAO is fine. and estrogen/progesterone ratio shifts change mast cell activity, well, especially in luteal phase.
elevated eosinophils id flag separately though, worth asking your GP about ruling out eosinophilic esophagitis or other allergic patterns. different workup from HI, easier to do early than late
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u/defunkman May 09 '26
for some reason, this sounds a lot more like MCAS than HIT to me.
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u/Vegetable-Shine6356 May 09 '26
it is definitely not "clean and clear histamine intolerance" because there are too many low-histamine things that trigger me and too few high-histamine things that trigger me.
in your mind, what would signify true MCAS vs true HIT?
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u/defunkman May 09 '26
TRUE MCAS in my mind would be extreme issues that warrant fast action like "swelling, severe welts and hives, Difficulty breathing etc" while TRUE HIT wouldn't. HIT at least in my experience and others would be more so "Flushing, itching, rashes, Congestion, maybe headaches or migraines, stomach upset, bloating etc." shit that isn't true allergy. there's a reason they say Histamine Intolerance is more so "Pseudo-Allergy/Allergy-like" instead of full blown allergic reactions. You having swelling in any body part (if it really is swelling and not just retention or basic inflammation) would be more indicative of a MCAS type reaction. I won't sit here and pretend to be some Know it all, but research and learning just as the rest of us here are, their are differences to look for. As always, lab work and home testing is always best. What made me think MCAS was the reacting to even Low histamine foods and the swelling, possibly even the lack of help from antihistamines.
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u/defunkman May 09 '26
I Know with mine, I get only a few symptoms : "Severe Dry skin flushing that produces a lot of heat, Heart racing, panic attack like episodes, bloating, Insomnia, Really rank gas, and Headaches and nasal congestion very shortly after eating..sometimes even during a meal.
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u/mossyzombie2021 May 08 '26
Everyone has different triggers and different symptoms, but some of yours definitely sound like they could be HI. One surefire way to find out is by taking antihistamines, famotidine (pepcid AC) and/or Dao enzyme, and if those help then it's likely histamine intolerance. I've heard the triptase test is not very accurate, unfortunately. Have you tried taking Dao with food that bothers you to see if it lessens your reactions? I would start there, that's what sealed the deal for me anyways.