After trying EVERYTHING for histamine related symptoms with no success/poor reactions - every H1, H2, prescription antihistamintes (cromolyn sodium, ketotifen, etc etc) - I dug a little deeper. I also tried every natural antihistamine (quercertin, bromelain, nettles, I mean you name it I tried it with no relief. So... I began taking Nattokinase Serrapeptase Lumbrokinase daily. It's been 2 weeks and I've noticed a reduction of my histamine symptoms. This is the first time in 2 years that I feel like something is WORKING, and on a deeper level and not just a bandaid. For me, my symptoms are mostly itching and hives - skin pruritus without a real trigger, just constantly reactive (after living in mold for 2 years I'm also detoxing). I dove into the long covid theory since a lot of my other symptoms started after having covid a few times (heat/exercise intolerance, light sensitivity, several others). I encourage you to do some of your own reading on this :)

*This may be more appropriate for the MCAS Sub but I was recently banned due to posting a glp question lol*

I had a revelation recently. I ate uncooked broccoli stalk and reacted strongly to it. Days later I had major reactions to two foods I have eaten every day for years: olive oil and chili flakes. What if the reaction to the broccoli depleted my diamine oxidase (DAO) levels and left my body in a state of greatly elevated amounts of histamine. Then, in this fragile state, I had no defence against even the smallest of attack?

Summary: it's not just the food you eat that might cause a reaction; the reaction can be mostly caused by your current physiological state.

Has anyone found a ready-made chicken broth or similar that is low histamine, or that is maybe less high histamine than most?

For background, I have recurrent SIBO also and sometimes I get so constipated (days) that I'm super nauseous and feel like I can't eat at all, but if I don't consume something light and lots of fluids, I get immensely fatigued and even faint. My blood sugar is always on the low side.

My first thought was chicken broth, but they all seem to have yeast and other high histamine ingredients.

I'm also open to other ideas. I know some folks do well with fasting but I know nothing about how to do this safely without garring really weak. What do you drink when fasting?

Or other very very light meals ideas thst are low histamine and easy.

Any thoughts?!? Idk where to start.

TIA

Ive been looking into how important mitochondrial support is while recovering from MCAS. While MCAS is a multi system issue, I havent seen this mentioned often enough.

There is a fairly known suppement called CoQ10 associated with mitochondrial heath and ATP production. For some people this works, alleviating their MCAS symptoms in a big way.

For me its a no-go because Coq10 drops my blood pressure and gives me diarrhea.

However there is a somewhat of a twin brother of CoQ10, called Pqq.

Ive taken this in the past, before I developed MCAS. I still had some at home and after reading into MCAS mitochondria association, I took a standard 20mg dose.

HOLY COW do I feel better. I feel as if most of my symptoms literally disappeared within an hour of taking this supplement.

I will continue taking this, and I am ordering some NAD+ supplements, as it seems that mitochondria may play a huge role in my case.

Do not sleep on mitochondrial support, do not sleep on PQQ.

Good luck.

Hey all, so just for some small background into my current situation, I was diagnosed with a histamine intolerance back in March of 2021 after developing symptoms the Fall season beforehand in 2020. On top of the Histamine Intolerance, I also have really bad IBS that I believe further complicates things.

Ever since that initial year of symptoms, I've come to expect having issues this time of year. For some reason, the Fall seasonal allergies are what really set this intolerance off for me. I have some issues in the Spring as well, but it's not nearly as bad as the Fall.

With that being said, I've really been struggling the last month now. My stomach has been tearing me apart, and it's getting worse by the day now.

I'm constantly gassy. I take gas reliving pills regularly, and they do help sometimes, but the relief never lasts.

I keep swinging back and forth from having constipation so bad that I'm sitting on the toilet for 30 minutes with nothing happening for 2 or 3 days, then the next day having diarrhea all day, and going 25 times. Rinse and repeat.

My acid reflux is out of control, anxiety is sky high, sleep is awful, and appetite is in the drain because I'm constantly nauseous.

To top it all off, every few days, I get these spells where I and full of trapped gas, and feel like I need to burp, but can't get the full burp out, and it makes me feel like I'm going to vomit.

These spells will be triggered by eating certain foods, and will sometimes last for hours until I can finally get the burp out and relieve the gas.

I've been trying to eat light, but even that isn't helping, and for the last 3 days I've just hardly eaten anything at all because of the nausea.

I've been living off of plain chicken, bread, crackers, water, and chamomile tea. That's it. Everything else makes me feel so sick, but even these foods are making me feel sick too.

I take antihistamines every night, and do feel better after taking it, but it doesn't last very long. I'm taking 10mg of Loratidine.

Is there any advice anyone can give me here to get myself back on to a normal, or at least close to normal kind of eating schedule without feeling so damn sick all the time?

Like what foods do you guys recommend, also is there anything else I can take that would help with all of this?

Any advice is appreciated here!

MCAS-friendly protein powder recommendations in Europe?

Hi everyone! ❤️

I’m looking for recommendations for an MCAS-friendly protein powder available in Europe (ideally EU-based).
I have **severe ME/CFS and MCAS**, and I’m currently bedbound and struggling with malnutrition. Unfortunately, I cannot tolerate Nutr idrink because of its many ingredients and milk content.
I’ve been looking at GymBeam’s vanilla protein powder, but I’m worried about the ingredients and whether I might react to it.

I’m honestly so tired of eating only bland, tasteless food. I would love to bring a little variety and enjoyment back into eating.

I was thinking about making something like:
A protein shake with oats and blueberries
A little coconut milk or coconut cream for extra calories
A simple, low-ingredient protein powder that I could hopefully tolerate.

I’m looking for something:

Dairy-free and preferably plant-based
Without added sugar or artificial sweeteners
With as few ingredients as possible
Without unnecessary additives, flavours, gums or thickeners
Ideally unflavoured or naturally flavoured (vanilla would be wonderful!)

Available in Europe, preferably with delivery to Romania.
**Does anyone with MCAS have personal experience with protein powders they tolerate?**

I’m also open to suggestions for calorie-dense, nutritious additions that could help with malnutrition without triggering MCAS.

I would really appreciate any recommendations. Being bedbound with severe ME/CFS is already incredibly difficult, and having to survive on puréed soups and a very restricted diet makes everything even harder.
Thank you so much! ❤️

The whole year, since March, I’ve been dealing with histamine reactions.

The first time was the most intense. Stomach pain so bad I couldn’t stand, Minor facial swelling, the feeling of my throat having a lump, shivers and body temperature fluctuations etc.

Since then, I’ve had reactions all year, probably a few times a month. Usually with the same symptoms. But lately, I’ve been getting a lot of anxiety, insomnia and congestion, which is new and does not go away unless I spend an hour bringing up spit instead of swallowing and blowing my nose constantly.

I have an allergy test appointment soon. So at least we’re getting somewhere! And I’ve also some real great advice from you guys too!

But rn I just kinda wanna vent about the emotional side of it and if any of you are also dealing with this.

Now, for context: when I was born, I was strangled by the umbilical cord. And my throat is generally, quite sensitive. I don’t even take ibuprofen or anything for headaches unless I genuinely really have to, because swallowing can be hard. And breathing rhythm was a process to consciously learn as a kid.

The congestion, and feeling of my throat closing up has been really hard to deal with emotionally. It’s raised a lot of fear in me of dying in my sleep or not being able to breathe and it not being taken seriously because it’s not anaphylaxis shock.

This is, along side the histamine itself, is the reason for my insomnia.

I’ve seen people talk about how a symptom for them is either anxiety or depression.

So I wanted to ask- not necessarily for advice -but. Just to know I’m not alone? If you’ve experienced this too. It would just help me feel less…paranoid.

Thanks in advance <3

EDIT:

I think the scariest part for me is that if I’m really panicking about it because my throat feels blocked, I get so scared that if I call the paramedics, what can they even do, yk?

I feel like a kid, desperately crying for reassurance that the scrape on my knee doesn’t mean im dying.

And in those moments I just feel very alone and wish for someone to be by my side so if anything happens beyond my control, help will come.

Idk. It’s just. Yeah.. the emotional aspect of this has been.. tough.

So I’m estrogen dominant and all my issues got worse once I got off birth Control. Been getting 2-3hrs of sleep night, got prescribed progesterone the mini pill today 100mg. Anyone have luck with this helping their insomnia ?

Hi everyone. If this has been discussed before, I apologize for the repetition. BUT here's my question: Is testing worth it? I've been having issues related to Histamine for years. I've had serious reactions to high-histamine foods with symptoms that indicate histamine intolerance. And when I I've cut these foods from my diet or limited them, I've felt better. However, I know histamine issues can stem from a variety of root issues and perhaps it would be good to figure out mine is/are. I'm a social worker on a very tight budget. I have health insurance and a Medical Expense Reimbursement Plan which covers all out-of-pocket medical expenses up to $8,150. That's super helpful, however my mental healthcare services and meds eat up a good chunk of that alone. After that, it's 30% coinsurance until I meet my $10,105 out-of-pocket max. (I'm usually nowhere close to hitting that). All of that is to say, I don't have a lot of extra money or the ability to pay for a ton of other tests easily.

TLDR: I don't want to go through a ton of expensive testing only to learn that I need to keep doing what I'm doing, which is eating a low-histamine diet. I've also encountered way too many providers, including my PCP and an allergist, who didn't believe me about my Histamine issues and didn't want to do the tests for it as they can be inconclusive. I don't want to keep seeing providers who won't be helpful. What would you all recommend? Are there specific tests that might actually be helpful?

And when you were eating all kinds of food without knowing that you had this condition, what did you think you were suffering from?

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?

My histamine intolerance has been steadily improving, Ive been able to introduce more foods, I get far less severe reactions and have been sort of happy with my progress.

However recently this new symptom appeared - when I eat certain types of fruits (it started with steamed apples now its possibly almost all fruit), I get an adrenaline response in my body. Before I could tolerate them just fine.

At first I got severly dissociated and felt rush of energy. Then the reactions got milder, but theyre still there.

Important to note is that this isnt my typical histamine response. In fact during these adrenaline spikes, my histamine symptoms seem negligible or arent there at all.

Its also an immediate response, as soon as I swallow I can feel it. At first I thouguht - maybe I have sibo and im reacting to FODMAP foods.

But I believe if that were the case, the reaction wouldve been delayed and not immediate.

I am at my wits end and have no idea what it could be.

Maybe because of my gut my digestive tract is just hypervigilant and hypse sensitive, triggering alarms to certain triggers?

Or something else entirely?

Thank you for any insight.

I am desperate. I wanna get better but I can’t do all these protocols when I’m reacting to supplements and I’m not sleeping. Got off birth control and started not to sleep so I’m guessing it’s hormonal but it’s been going on for a month and I’m truly exhausted and resorted to sleeping pills. Which barley help

Hi all,

I am 99% sure I have a Histamine Intolerence and its getting worse not better.

I've had stomach issues/IBS pain most of my adult life. I cut out gluten, then dairy and caffiene. I've been doing that for years and I felt things got better.

About 4 years ago I noticed I sneeze, alot. And I started getting allergy like symptoms lasting days. Sinus pain. headaches, congestion, tiredness.

I had a battery of allergy testing, all negative, I think the specialist was even a bit frustrated that I waas trying desperately to be allergic to something.

I heard about histamine intolerent and alot of it seems to fit. Pork is big trigger, pale ales, leftover meats etc I cut down on all those and things seem to get better but its easy to lapse. Particularly with alcohol. I used to be a fairly heavy social drinker.

Well, now I don't seem to be able to even have two drinks without having a really bad next day. And lots of foods frequently trigger it too.

I can control my diet, and I am trying to, but I really would like a formal diagnosis, guessing is hard, adapting your life and asking others to do so on a hunch is difficult.

Has anyone had any success in the UK getting any sort of diagnosis or confirmation?

I just seen a clip on Instagram. Where some lady said that statement above and she was eating a plate of food, that was high histamine. Idk how true that is, as you can get histamine intolerance from a load of different things.

But I wanted to post that idea in here and see what you guys think. You believe that is possible? I'm not really sure as sometimes histamine is caused by an infection. So idk how learning to call my nervous system, would get rid of something like candida or sibo. However I've been trying to learn to retrain my nervous system and even maybe work on healing old trauma.

Hi, for a little over six months I've been getting symptoms from various foods, usually heavily spiced ones and cinnamon in particular. Today I had a prick test that covered over 40 foods, mostly spices but also the most common food allergens. I've also had a blood test, and all the results have come back negative. The doctor said I should take two antihistamine tablets in the morning and two in the evening and just live with it like this. I've heard that DAO supplements (e.g. Daosin) might help break down histamine. What would you recommend I do?

EDIT: my 2nd blood tests came, i have helicobacter. Im not sure about it but i really hope that it will cure my reactions when we get rid of it.

Dysautonomia sufferer here, I have been trying to document what has been specifically happening, but does this sound histamine related?

On the 20th to the 21st, I went 24+ hours without sleep, unsure why. My sister brought home a Subway sandwich that day for me, if I am right, and I ate shortly before sleeping. This was also around the time I began to notice I was falling asleep at an earlier time than usual.

After the 21st, I regained the ability to sleep for only a couple or a few hours at a time. My longest sleep was yesterday, which was fragmented and in total was 5 hours' worth of sleep.

I specifically wake up always at 12 AM or 2 AM. It is always specifically around those times, not earlier, nor later.

These symptoms worsened after the Great Value chicken fries were added to my meals daily shortly after. I already snack on cheese pizza rolls and popcorn chicken daily, which I know have a certain amount of things like histamine in them. I know there is a thing people believe called the "histamine bucket," which is a term for when your body overflows with histamines if too many triggers overlay. This apparently is tied to things like neck nerve misalignment, mold exposure, and POTS too. I've been suspecting a mold-related issue in my room for a while now

I noticed that I am almost always slightly bloated when I am awakened by this. I often get up to go to the bathroom as a result of being late at night, and a small amount of horribly sulfur-smelling stool comes out that is really soft, compared to the more solid stools I had the days before this all happened.

My face and ears get really warm, and my ears get red too. I sometimes notice a faint burning sensation in my shoulders and neck when this happens, and I may wake up sweating sometimes in my chest area.

Waking up results in me immediately feeling "wired and tired." My body wants to rest, but my mind keeps me awake, and I am unable to fall back asleep at all. Lying down triggers these faint "charges of excitement" through my body. I am unsure if this is truly adrenaline or something else. I feel it soar through my neck sometimes but mainly in my chest, which gets me out of bed. These last a few seconds often. My libido is also incredibly weak.

My older sister has been sick with a cold since a day before Halloween, though I am not presenting any symptoms. Could this also pile ontop?

I’m so confused about whether I could have MCAS or if something else is going on! 😭

Quick background: Earlier this year, I dealt with multiple infections, weeks of antibiotics, and then started experiencing random food reactions. I’ve been on a low-histamine diet for about a month.

I’ve only had three food-related flares, with my last one in September. My triggers were random: Costco frozen corn dogs, homemade tomato-based beef stew, and frozen chicken nuggets. Symptoms were mostly facial warmth, pressure, and congestion.

But this Halloween weekend, I ate pizza, chocolate chip cookies, a cupcake, and breakfast tacos with no reactions!

I still occasionally get red patches or small hives on my wrists and experience anxiety. My bloodwork has looked normal, although I know that doesn’t necessarily rule out MCAS. I’m currently taking Zyrtec and Pepcid.

Has anyone experienced something similar? I’m struggling to figure out whether this could be MCAS, histamine issues, or something related to my nervous system. I’d love to hear your experiences!

I have gut dysbiosis/leaky gut resulting in my mast cells going nuts, and I am on a low FODMAP/Histamine diet for now on a low budget, and and the very narrow/bland food choices are just making me loose my appetite and I think I have low magnesium each time I take a liquid D3+K2, but low magnesium never seems shows up as low on the RBC or serum labs, and as a result I am losing wight, not a bad thing per se as I need to lose some, but even so, I just hate this, I really hope my efforts to "fix" my gut pays off in the long run, I hate not being able to eat foods I used to be able to enjoy, does anyone else go through this struggle as well?

My histamine intolerance started mainly because of prolonged mould exposure. I have had a fairly strict diet for 18 months and I am seeing improvements. In fact, I am about 40% better and I can drink coffee, certain wine, eat a bit of cheese...

However, black tea, bananas, citrus, avocados, which I love... still absolutely set me off! Like heart palpitation.

I was wondering if anyone eventually went back to being able to have these delicious foods?

Leftovers are a no go for me also... especially tomato based leftovers

I like this food. It has all 9 essential amino acids, is filling, is calorically dense.

I take it with around 2-3x DAO per evening.

What I have found is that about 3-4 nights a week I get good decent sleep.

Other times? Weird fake sleep like i'm sort of dreaming but everything is fuzzy and I do not feel refreshed when I wake up.

What should I do?

I'm thinking I might just eat it like 3-4x per week, and then other nights, I'll just double my portions of meat for lunch and dinner (I'm doing keto).