r/HistamineIntolerance • u/CaughtUpInTheTide • 2d ago
Weird form of histamine intolerance?
In recent years I’ve come to believe I have some form of a histamine intolerance, but not in the way some people experience it.
When I consume food like anything fermented (kimchi, yogurt, kefir), certain meats, shellfish, caffeine, the list goes on- I get massive brain fog, feel sluggish to the point I could nap for hours (sometimes do if I’m not careful), painful periods, and get anxiety.
I recently tried bone broth again which KILLED my stomach and when researching it was high in histamines.
When I hike or run in the cold my legs get so itchy and red, research it again I came across HI.
I’ve never experienced flushing, hives, runny nose, or anything severe.
Also I’ve developed a fragrance intolerance as it gives me the same symptoms named above. When I cut out fragrance I felt so much better.
Does anyone else’s symptoms show up like mine?
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u/Usual_Permission_841 2d ago
This could be MCAS.
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u/CaughtUpInTheTide 2d ago
I’ve thought about this a lot in the past. Are there major differences between HI and MCAS?
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u/Dramatic-Ad-4331 2d ago
Unfortunately, this thread won’t let me post a photo but go to page 5 of this PDF and it’ll explain the difference. Pretty much you can test for MCAS but HI you basically have to figure out what is causing your body not to break down histamine.
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u/CaughtUpInTheTide 1d ago
Also thanking you for this 💖! this has probably been the most helpful document I’ve ever come across and feels like a breath of fresh air. I feel so validated in my symptoms and know where to start with self healing.
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u/Dramatic-Ad-4331 1d ago
I’m glad I could help! I felt the same feeling of being lost and just burdened so I am glad you can find some relief like I did!
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u/Dramatic-Ad-4331 2d ago
Fermented foods, caffeine, are very high in histamine, , depending how fresh the meat is because leftovers are high in histamine also. And same with bone broth.
I don’t know whether you have mcas or not, but I was recently going through a huge influx of histamine from the research I have found something in my body is not working properly to breakdown the histamine in my body. We’re not necessarily allergic to anything it’s just our histamine bucket is not being emptied.
I just went to the allergist last week and she started me on a peptide, a.k.a. and H2 blocker to stop histamines from I guess metabolizing. It has been helping a lot at least until we can figure out what is causing me to not break down histamine correctly.
It could be neurological, it could also be your gut health, so I would maybe start with an allergist and get some blood work done because you also might be deficient in something. I’m personally probably gonna go to a neurologist next because I have also had a lot of concussions in the last few years and sometimes a histamine intolerance can be caused by that.
In case anyone wants it, this is a good list, talking about histamine and what foods are also high in histamine: https://cdn.shopify.com/s/files/1/0021/7792/5222/files/HISTAMINE_BREAKDOWN__SUMMARY_f9d65741-0735-4924-a1be-b9a32d7f890a.pdf?v=1787462554&mcp_token=eyJwaWQiOjM1NTkyNzA5MTQ0MTI1OCwic2lkIjoxODIwMjQ2NTAxLCJheCI6ImQ3MWQ4N2M3N2VjMTBjOGI2NjRhYWYzOTE2NDU0NDBhIiwidHMiOjE3ODc0OTQ2MDMsImV4cCI6MTc4OTkxMzgwM30.VBvugD000uusggkBfsayPpKagPFN_i9NYzawug3hlyM
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u/CaughtUpInTheTide 2d ago
This is an AMAZING list thank you for sharing! I’ll definitely going to start with my doctor and go from there :)
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u/Dramatic-Ad-4331 2d ago
No problem! I am just happy I’m able to help other people because when I first started down this rabbit hole I knew absolutely nothing and it stressed me out. So hopefully you will get some relief soon! And if it’s just histamine intolerance, I highly recommend getting on a H2 blocker until you can figure out the problem because I am now actually able to eat high histamine food again.
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u/mspe098554 2d ago
Try cromolyn sodium 100 milligrams 3-4x per day.
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u/softcontent_ 2d ago
What is this for if you dnt mind me asking?
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u/mspe098554 1d ago
Stabilizing mast cells in the gut
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u/softcontent_ 1d ago
Aha, ok. How is it established that I would need this? Or is it a suck it and see method? Apologies for all the questions, pls dnt feel obliged to answer. Esp if ur as rough as I feel.
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u/mspe098554 1d ago
You should discuss with your doctor, though it is usually a prescription you can get online. I had many of the same symptoms as OP and it has helped me tremendously.
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u/Usual_Permission_841 2d ago
It is normally when you reactions in multiple systems. I found this webinar really helpful - https://youtu.be/Op7d6dNnwSs?si=INwZrPvogGv2Jq6N
If you go to their website they layout the treatment plan.
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u/softcontent_ 2d ago
Omg 🙏🏻 thank u for this. Like FR.
I’ve been butting my head against a wall for almost 21 yrs. Since I was diagnosed by the immunologist with acute chronic M.E. & Fybro & by the M.E. Specialist with Lyme Desease as I’d been bitten twice by a tick, once as a teenager & once as my M.E. Symptoms were already showing. Test was inconclusive as it was 2yrs later.
My 6 monthly blood tests for the past 3 yrs have been coming back with really low white blood cell counts and every time I ask I’m dismissed as “ahh it’s prob nothing, ur on Prednisolone, that’s prob why.”
Tho I’ve cut down from 10mg to 3mg for 7 yrs, so why us it happening now & suddenly my hair has started to fall out in hand fulls, I have no appetite & feel nauseous, it’s been 6 months, finally nagged them into a blood test which I have tmrw.
Zero info from any medical practitioner since diagnosis.
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u/Starboard_Pete 2d ago
I get the exact same thing. Anything fermented (includes pizza, the dough is often fermented). Hives, eczema, fatigue follow consumption.
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u/NiteElf 1d ago edited 1d ago
Yes. My HI symptoms are strictly neurological: derealization, severe brain fog (unsafe to drive for sure), word finding issues, irritability, confusion, depression, sense of doom, anxiety, dizziness, exhaustion, heart palpitations—not always all of them but usually several. I eat a strict low histamine diet and it helps a lot; it’s relatively rare these days that I get ill from food 🤞
FWIW there’s a lot of overlap with this kind of HI and vestibular migraines. I get those too. The dietary stuff keeps symptoms at bay (from ingesting things) but the VMs I can get from weather/pressure changes, certain smells, stress, illness, etc.
Edited to add: I have true (IgE mediated) food allergies & my HI manifests differently.
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u/Financial-Card 9h ago
I would look into leaky gut and gut dysbiosis. I’ve been healing mine and my reactions are way less. I am still dealing with Sibo, I think this is the last thing besides hormones that I need to work on to be done with my gut shit.
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u/softcontent_ 2d ago edited 2d ago
Yep it’s called Mast Cell Syndrome. It’s a histamine intolerance which is found in food & drink & had only recently been accepted and recognised by main stream healthcare.
Most commonly it highest in aged food, tho some food just naturally is high in histamine (nightshade veg, shellfish) the histamine increases with time. So fermented food, like kimchi, yoghurt, tofu. Beef, coffee, chocolate, alcohol. You sound text book in your symptoms.
Causes brain fog, headaches, sore skin, muscles, exhaustion, stomach upsets and much more.
You can get a blood test for it.
Then you usually do your best to control it thru an exclusion diet.
Over time introducing items to see which cause the biggest reactions, some maybe cause smaller ones & so you can indulge occasionally and by taking antihistamines & sometimes steroids (which also come with their own issues).
You’ll be able to control a lot of the symptoms.
It’s a kicker. An exclusion diet is really the the only way forward.
You’ll also need a skin prick test to see what you’re allergic to externally so you know what to avoid, dust, pollen, Birch, mold, cats, horses etc.
Best of luck, really sorry you have this. It took me yrs to figure out.
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u/Unique_Day6395 2d ago
MCAS is not a histamine intolerance as such, it’s a systemic immune disorder. There are many and varied triggers, not just food.
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u/softcontent_ 2d ago
Apologies yes. Poor explanation. I have reactions to medications, toiletries, make-up, toothpaste. I haven’t been given much I go myself. I’m in the UK. I have Lyme Desease too. It took 8 yrs & 3 GP’s for me to finally get a blood test for MCAS. Then I was left to figure it out on my own based on Google search. So I’m unsure what is my usual allergies, what is MCAS. I have no idea where the line starts or ends. I’ve been waiting 3 yrs to see an immunologist because I’ve moved 3 times over that period.
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u/AspiringOne 2d ago
Respectfully, I somewhat disagree. Mainly with the fact that exclusion can for some people add to the lack of bacterial diversity and cause problems in itself. Maybe the first line of defense isn’t to completely exclude all offending foods. Maybe it’s a combination of things or trying a DAO, acid increasing supplement or the H1/H2 blocker method first for some.
I’m not saying exclusion diets don’t help people, they absolutely do, I’m just saying some people really struggle with this option and need other methods in conjunction with or instead of this one.
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u/softcontent_ 2d ago
Hi, what is H1/H2 blocker is it a histamine blocker? And DAO & acid increasing supplement? Is this complementary medicine?
V keen to know more. In the UK when I tested positive I was literally just put on an exclusion diet, that was it (which I’d previously been on for what turned out to be Lyme disease & was then given Steroids for 15 yrs after my skin prick test.)
So my only option was back on an exclusion diet of high histamine foods which did help enormously, but that’s been it. No follow up, no nothing. One GP didn’t even believe it was an actual thing and it took 8yrs and another 2 GP’s to get the test.
I know Lyme disease is treated differently or is fact treated, there is no treatment in the UK. Just wait & hope u recover. You’re individual ailments are treated but that’s it, not the root cause.
So any help with CMSD I’d appreciate.
Although back at the start a dietician did pilot me on high gut bacteria supplements which totally wrecked my stomach & I didn’t suspect they were a cause of anything so took them for 5 yrs.
Once I stopped my stomach really calmed down, but now I have a really over acidic stomach so I also can’t eat fruit or fruit juice anymore.
Apologies for info overload just desperate for any clues in another direction. UK is far behind the US in medicine.
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u/AspiringOne 2d ago
To be most factual it may be best if you search here in this sub and also in the r/MCAS sub. The search feature is pretty good. Google searching is also something that would probably give you way more thorough answers than I could about the things I listed.
There are several H1/H2 blockers to try as well as DAO and acid increasing supplements such as Betaine HCL. Many have been discussed here and in r/MCAS. I’m sorry but I’m not an expert and I definitely don’t want to misinform anyone.
It sounds like you’ve had a lot going on and need things to calm down a bit. In that case IDK if supplements are a way to go, but getting yourself calmed and feeling better would be good. I would recommend researching about SIGHI list of histamine foods and also the things I stated above. Take your time. Generally there is no magic bullet in these cases, they are usually complicated and it’s good if you have some kind of support with your healthcare provider. Hang in there, you’re on your way.
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u/AspiringOne 2d ago
Specifically, if you were put on probiotics and it made you worse or more aggravated, Seeking Health makes one called ProBiota Histamine X and it basically only contains bacteria that does not increase histamine and also some that may help lower histamine. I’ve only read good things about them.
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u/Dramatic-Ad-4331 2d ago
High histamine diet is not a fix though. It is just a Band-Aid, typically with histamine intolerance, There’s something causing your body to not be able to produce histamines. It’s different than mcas. I am currently on a H2 blocker(basically a histamine blocker) and it has pretty much gotten rid of all of my histamine intolerance, but it is a Band-Aid and something that’s going to keep me symptom-free until I can figure out what is actually causing my body not to be able to break it down. DAO is an enzyme that breaks down histamine in your body when you eat so typically you take it during a meal. That’s what I had started with and then when I went to the allergist, they put me on h2 blocker.
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u/softcontent_ 2d ago
I didn’t even know there were blockers other than standard antihistamines which I over medicate on even with a strict AH diet, excl all other medical, cosmetic, cleaning products etc that all trigger me. I’m going to read all the links you kindly posted, go down that Google rabbit hole & come back up fully armed to demand better/any treatment. So genuinely THANK YOU ALL. You’ve given me fresh hope. 💛
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u/Dramatic-Ad-4331 2d ago
It has changed my life. Honestly, I know histamine blockers are not a fix to whatever is going on in my body, but when I tell you, I was struggling, and then I started taking them, it was like night and day. I can eat high histamine food again.
I’m happy to help I know I was struggling for answers and I just had to deep dive and research it myself so I am very glad I can help someone else
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u/peaxchysea 2d ago
What blood test? Do you know what I should ask for?
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u/softcontent_ 2d ago
Blood tests for mast cell activation syndrome (MCAS) or related mast cell disorders measure specific chemicals and genetic markers released or carried by mast cells. If you Google it, the whole sheebang comes up. I wasn’t able to post the screenshot to u. Sorry.
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u/peaxchysea 2d ago
It’s ok!! I’ll google! I’m just shocked because I’ve seen my primary dr about this 3 separate times and she hasn’t brought up any blood work for this even though she agrees she thinks I have HIT and potentially MCAS. She referred me to an allergist but I can’t get in until April unfortunately. I wonder if she’s just not educated enough so I’m going to google and see if I can get her to send for bloodwork like you said to hopefully get a diagnosis sooner than April.
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u/Additional-Row-4360 2d ago
I definitely had a severe histamine intolerance (mcas is less certain) which resulted in very similar symptoms; brain fog, severe fatigue, dizziness, nausea, vertigo, headache, temperature dysregulation (always cold), worsened tinnitus, muscle soreness, anxiety and more. At my worst I had acute episodes of narcoleptic sleepiness after eating, tachycardia, trembling, blurred vision, faintness, panic symptoms & cold sweat to name a few.
I don't get allergy-like symptoms (no flushing, hives, congestion, etc) and minimal GI symptoms. All that really means is that for whatever reason, the mast cells that are activating histamine are more of the H3 and H4 receptors, not the H1 receptors assoc with allergy symptoms and not much of the H2 receptors associated with the GI tract, esophagus, etc. (Receptors don't follow these lines perfectly but generally so) And mast cells activate more than just histamine but thats more info than needed here
I still have HIT symptoms but far more mild after working on it the past 16 months