u/Ok_Significance_8896

I’ve been diagnosed recently with histamine intolerance and over the past 2,5 years I’ve had a ton of tests and investigations done by my gastroenterologist ENT doctor and an allergist. Everything has come back normal except for my blood DAO level, which is 2.

I was prescribed antihistamines, supplements, DAO enzyme and a low histamine diet. Some of my symptoms have improved, but others haven’t. I’ve been following the low histamine diet for about 3 months. I also haven’t eaten gluten or dairy for around 2.5 years because I don’t tolerate them. I tested negative for celiac disease and a milk allergy. In fact, I haven’t tested positive for any allergies so far.

The problem is that I can only tolerate maybe 6-7 foods without experiencing symptoms. DAO supplements don’t seem to do much for me either. The only one that seems to help slightly is NaturDAO, which reduces some of my symptoms.

I still experience heart palpitations after eating, anxiety after eating, constant nasal congestion, bloating, fatigue and occasional insomnia. Before starting the diet and treatment, I had a huge number of symptoms, far too many to list here, but I never had rashes or other obvious skin symptoms, apart from some acne on my face. I also don’t have heat or exercise intolerance, abdominal pain or any symptoms of anaphylaxis.

I recently saw another allergist, who ordered a bunch of fairly expensive genetic tests, a microbiome test, tests for parasitic infections, an H. pylori test even though I had already tested negative a few months ago and another allergy test that supposedly looks for delayed reactions to foods.

One of my more unusual symptoms is what seems to be reactive inflammation in my wrists. No pain, just inflammation. But inflammation markers (did 3 test for inflammation) are normal. It's not very obvious, but clearly there. It was worse a few months ago, but it has improved. Interestingly, the inflammation decreases significantly when I don’t eat.

The allergist also ordered a test to check for mastocytosis and that really scares me. At first, I thought they were referring to MCAS, but after reading about it, I realized they’re not the same thing. My allergist didn’t mention MCAS at all and I’m not even sure whether MCAS is a recognized diagnosis in my country.

The whole situation is really stressing me out and scares me. I’ve been trying to figure out what’s going on with me for the past 2 years, but I still don’t have any concrete answers.

Has anyone else been in a similar situation, especially with a very low DAO level, extremely limited food tolerance and symptoms that don’t completely improve on a low histamine diet?

Has anyone with MCAS mainly experienced post-meal symptoms without the typical skin symptoms such as flushing, hives or rashes? And has anyone experienced joint or wrist inflammation that seemed to improve significantly when fasting or not eating? I also have a reactive lymph node that gets bigger when I cheat on my diet and eat dairy. Even lactose free dairy triggers me. Again, no dairy intolerance or milk allergy.

I’d also really like to hear from people who were initially diagnosed with histamine intolerance but later found out that something else was going on. What made you start looking beyond histamine intolerance and how did you eventually figure out what was actually causing your symptoms?

And for those who were tested for mastocytosis, what prompted your doctor to order the testing and what did the workup involve? Can you live a normal life? I’m pretty scared about it right now, so I’d really appreciate hearing about other people’s experiences.

I have histamine intolerance due to DAO deficiency, although idk if that’s my only root cause. My allergist thinks it’s contributing to my LPR and I got diagnosed after a ton of tests.

LPR has been absolutely awful for me. For almost 6 months my throat was red with white spots and looked horrible. I tested negative for bacteria, viruses and fungus, so apparently the LPR was the only thing causing it.

I’m also on a ridiculously restrictive diet because of my histamine intolerance and other mystery intolerances, which have destroyed my quality of life lately. The diet helped with the histamine issues but did basically nothing for my LPR.

I tried lansoprazole, famotidine, soothing lozenges, throat sprays and more other stuff from my ENT. Nothing healed my throat.

As a last resort, I tried Manuka honey. This was a huge risk because I react really badly to normal honey due to my many mystery intolerances. Surprisingly, I didn’t react to the Manuka.

I take 2 - 3 teaspoons a day, usually a bigger one before bed. I eat it slowly and don’t drink water afterward because I want it to sit on my throat for a while. After less than 2 weeks, I noticed the white spots starting to fade. For the first time in 6 months, my throat is actually improving.

I’m using Manuka 300+ MGO. I’ve read that 300 MGO is needed for a healing effect, but I have no idea if it’s actually healing my throat or just creating some kind of protective barrier.

If you try it, make sure it’s properly certified and from New Zealand because apparently there are a lot of fakes. I got mine on sale and I can’t believe it seems to be working when absolutely nothing else did.

I’ve tried so many pills and liquids that were supposed to create a protective coating, but none of them healed my fucked up throat.

Also tried coffee again recently. BIG mistake. It made my LPR like 10x worse, so yeah… no more coffee for me.

Heart palpitations were my first symptom that signaled something was wrong. I used to get them after every meal, even low histamine ones. They weren’t as bad as when I ate high histamine foods, but still annoying. Palpitations were also the first symptom to appear whenever I ate something I wasn’t supposed to.

But suddenly, they disappeared and it feels weird because I don’t know why. I’ve been eating low histamine for 3 months now. From time to time, I had cheat meals because I can only tolerate 6 - 7 foods max without symptoms.

I didn’t change anything in my treatment. I got a new prescription for anti inflammatory meds, but I haven’t taken them because I need to do more tests at the clinic first. Right now, I’m only taking magnesium, antihistamines (for 3 months already), vitamin C, vitamin D, omega 3 and Seeking health ProBiota histaminX. I stopped quercetin because I felt it wasn’t doing anything.

I even drank raw bio cocoa powder with coconut milk and ate peaches without getting palpitations. I did get a bit bloated and constipated though. It’s just so weird that the palpitations stopped so suddenly. I really hope it’s not temporary and that I’m actually making progress.

Has this happened to anyone else, where a symptom was persistent and severe and then suddenly just disappeared? I suspect proBiota histaminX may have helped, but I’m not sure.

My palpitations also used to come with a sort of internal agitation/anxiety. Now I feel much calmer and I don’t even get them when I wake up early anymore.

EDIT: I'm also taking DAO, naturDao, highest strength. But just helps with symptoms on low histamine diet. I have severe DAO deficiency, tested it. But I think this is not the only root cause of my histamine intolerance because dao enzyme doesn't do much for me.

I'm diagnosed with histamine intolerance and severe DAO deficiency, but DAO enzyme supplements don't really work for me. I also have silent GERD and LPR, which my doctors think are caused by the histamine intolerance.

I've tried several DAO supplements that did absolutely nothing. The only one that helps a bit is NaturDAO. It doesn't stop my symptoms but it makes them a bit milder and they don't last as long.

I recently saw my allergist again and asked why DAO isn't working like it should. They said they didn't know, ordered a few more tests and gave me anti inflammatory medication because I'm constantly congested. I'm still far from symptom free, but a bit better. No more constipation, anxiety 24/7 and can sleep better.

I'm getting a second opinion soon. What bothered me is that I told my doctor I might have vitamin deficiencies because I've been on a very restrictive diets for almost 3 years. I have no energy and I'm always exhausted, but they didn't order any vitamin tests. My ferritin is normal, I already checked.

My diet has become extremely limited. I basically eat eggs, boiled chicken breast, cucumbers, iceberg lettuce, carrots, quinoa, broccoli, zucchini, pomegranate, sometimes cantaloupe, olive oil, sweet potato (I hate it), parsley and occasionally corn and lentil crackers. That's it, this are the only foods I can tolerate. Most of the time I can't even eat the crackers because I react to them. I keep eating the same foods over and over, but I don't feel nourished. I'm so tired of boiled food and not being able to eat good carbs.

The only good thing is that if I'm extremely strict, most of my symptoms disappear, including my anxiety. If I eat too much, the symptoms come back. I have to be in a caloric deficiy. I also tolerate coke zero surprisingly well and it even seems to help a little.

But I can't live like this forever. DAO only helps a little, even with a low histamine diet and I don't understand why.

Does anyone else have DAO deficiency and find that DAO supplements barely work? What ended up helping? And how long did you have to stay on a low histamine diet before you finally felt normal?

I'm definitely better than I was, but I still don't feel like my old self. I'm not ok physically or mentally. I'm terrified this is how my life will be from now on, where certain foods cause anxiety and severe insomnia. This isn't a good life. It feels like a nightmare.

EDIT: I forgot to mention that I'm also taking antihistamines, quercetin, vitamin C, vitamin D, omega-3 and zinc. I was taking vitamin B6 as well, but I stopped. All at my doctors recommendation.

I posted recently about how coca cola zero has been helping me. I also tried the caffeine free coke zero and it had the same effect.

If I drink it after eating, it seems to stop a histamine reaction. In about 95% of cases, I get symptoms after eating, even when I'm eating a low histamine diet. The first sign that I'm having a reaction is high bpm, annoying heart palpitations. Since I started drinking coke zero after meals I haven't had heart palpitations after eating. Feels unreal.

I like the caffeine free version because I'm prone to insomnia and I do everything I can to protect my sleep.

I think it does something to my stomach acidity, although I can't really explain why it works. I can only say that for me it does.

For some context, I've been diagnosed with histamine intolerance caused by DAO deficiency after extensive testing and seeing multiple doctors. My DAO level is below 3. I'm on treatment and have been following a low histamine diet for quite some time.

The only DAO supplement that makes any noticeable difference for me is a naturaDAO, but even that only shortens the duration of my symptoms. Every other DAO brand I've tried has done nothing. Antihistamines and supplements only make a slight difference, even when I'm very strict with my diet. So unfortunately, I still experience symptoms every single day, no matter what I eat.

I'm posting this again in case it helps someone else. For me, it has made a noticeable difference and feels very stabilizing. It's almost like it stops the histamine from exploding in my body lol.

I don't drink it carbonated because I can't tolerate the fizz. I let it go completely flat first and it doesn't trigger my GERD/LPR.

I never used to drink coke or any other fizzy drinks. But I was desperate for some form of caffeine (coffee gives me horrible symptoms) and something sweet, so I was prepared to deal with the suffering after drinking coke.

From time to time, I cheat on my horrid diet because I have no energy and I still have some symptoms even while following a strict low histamine diet.

Anyway, I had no symptoms after drinking Coca Cola zero. In fact, I actually felt more relaxed, almost like it helped. I don't know if I'm imagining it, but my pulse stayed stable and I didn't even have reflux (I'm diagnosed with silent GERD/LPR).

What is happening??? I react to all kinds of healthy foods, including fruits and vegetables, even ones that are considered low histamine, yet I'm completely fine with coke zero. It actually feels calming. Why would that be? I usually react to almost everything, yet an unhealthy drink is making me feel better.

EDIT: I also forgot to mention that I let my coke zero go flat because carbonation makes me bloated and I've never liked fizzy drinks. Just to add some context and reply to a few comments: it doesn't make me feel "good". It just makes me feel... normal. Calm, like my body and mind aren't constantly overstimulated. It actually reminded me of how I felt before I developed histamine intolerance.

I'm already on antihistamines, DAO enzyme, supplements recommended by my allergist and a low histamine diet, but today is the first day my histamine intolerance has eased up a bit. I swear this should be studied lol. It doesn't feel like placebo, even the inflammation seems a little better.

Whats your experience with HistaminX by Seeking health?

I just finished my HistaminBalance Plus-Probiotic and ordered HistaminX by seeking health to see if it works better.

I didn't experience any unpleasant side effects with HistaminBalance Plus-Probiotic, it was very gentle and I think it really helped with my constipation. But that's about it. I don't feel like it made much of a difference for my histamine intolerance, even though I've been following a low histamine diet and treatment.

I have been diagnosed with histamine intolerance. My root cause seems to be DAO deficiency, which might be genetic because my DAO level is under 3. I don’t know if this is the only cause. I’ve done a bunch of tests and everything else seems normal. I also have vitamin d deficiency for years, can't get it to a normal level despite constant supplementation.

I’m following a low histamine diet and taking antihistamines. The problem is that antihistamines make me extremely tired and I basically have no energy. I'm like a zombie.

When I have a lot of work to do, I drink coffee and it acts more like an illegal stimulant lol. It makes me super hyper and I can actually get things done. It works, but then the insomnia kicks in and it takes me 2-3 days to feel somewhat normal again.

Coffee is one of my biggest triggers and messes me up badly, but sometimes I feel like I need it because otherwise I can’t function. I suspect that some components of coffee might be affecting me more than the caffeine itself.

I was wondering if caffeine tablets are generally better tolerated and whether anyone has had a positive experience using caffeine without coffee.

TL;DR: Years of GERD/LPR and digestive issues turned out to be caused by histamine intolerance (caused by DAO deficiency). Treating the root cause with a low histamine diet and medication has helped more than treating reflux alone. If you have LPR, food intolerances and GI issues, it may be worth looking for an underlying cause.

I'm posting this in case it helps someone. Here's a bit of my health backstory.

I've had gut and digestive issues my entire life, but over the past few years they've gotten progressively worse. It all started with constipation, then came GERD, bloating and eventually almost every digestive symptom you can think of. I never really had diarrhea or nausea, but I had over 50+ different symptoms at one point. I don't even remember them all because they changed over the years.

I was diagnosed with LPR about six years ago, but somehow I recovered much faster than expected. Unfortunately, the symptoms eventually returned. I developed GERD again, along with a raspy voice, a sore throat every morning, ongoing digestive issues snd severe anxiety that was closely linked to my GI problems.

About three years ago, I started developing severe food intolerances, mainly to gluten and dairy. It was a humbling experience because my ignorant self used to think people who avoided gluten and lactose were just being extra annoying. Stupid of me, I know.

As my symptoms became more severe, my throat started looking terrible. It had white patches and small red bumps, so I initially thought it was candida or something even worse. My ENT ruled out fungal, bacterial and viral infections after running several tests and diagnosed me with LPR. I was given treatment and referred to both a gastroenterologist and an allergist.

It turned out that my reflux had become silent reflux. For a while, I thought my GERD had improved because I no longer had the typical heartburn, but it was actually silently damaging my larynx.

Eventually, I was diagnosed with histamine intolerance caused by DAO deficiency and started treatment and strict low histamine diet. I also learned that histamine plays a role in gastric acid production and in my case, my GERD was likely being driven by my histamine intolerance.

I also noticed that my LPR flares up badly whenever I eat dairy. I'm not lactose intolerant or allergic to dairy, but I have a strong reaction to it, even to dairy products that are lactose free and considered safe on a low histamine diet. My throat becomes red and I develop a LOT of mucus. Gluten also triggers my symptoms, but dairy is by far the worst for my LPR.

Right now, I'm on a strict low histamine diet, taking antihistamines and supplements recommended by my allergist and I'm slowly getting better. I'm still far from feeling completely well, but at least I finally discovered the root cause of many of my problems.

My throat still hasn't fully healed and I think that's because my histamine issues aren't completely under control yet.

If you're dealing with digestive issues, food intolerances and LPR, it may be worth looking for the underlying cause. Sometimes LPR doesn't improve because we're only treating the symptoms instead of addressing what's causing them in the first place.

So recently I started taking NaturDAO. I take 1,000,000 HDU before every meal, 3 capsules per day.

Over the past few weeks/months, I tried Daosin, DAOhelp and DAOfood, but none of them had any effect on me. None. Why did I keep taking them? Because my allergist recommended them, even though I didn't feel any improvement. I have a severe DAO deficiency, so I trust my doctor's advice.

Since I was still having symptoms despite following a low histamine diet, taking antihistamines and using DAO supplements (all recommended by my doctor), I decided to give NaturDAO a try.

I still have symptoms with NaturDAO, but my overall health has somehow improved. I feel like I'm breathing better and my nose is no longer congested 24/7. It also seems like my food digests faster instead of sitting in my stomach for hours. I have much less heartburn and I don't burp after everything I eat anymore.

I should mention that I have symptoms after eating anything, whether it's low in histamine or not. Of course, my symptoms are much worse when I eat high histamine foods, but I experience symptoms every single day despite of what I'm eating. If I don't eat I'm ok lol.

Since starting NaturDAO, my symptoms seem to calm down more quickly. One of my worst, most persistent symptoms has finally become less intense. It's not gone, but it's much easier to live with. I'm talking about heart palpitations. My heart rate is more stable now and most importantly, it's much calmer at night.

Long story short, NaturDAO has helped me a lot. Given my condition, even small improvements feel huge.

One symptom that still persists is insomnia and poor quality sleep. That said, I've also been under a lot of stress lately and stress alone can seriously affect my histamine intolerance.

I previously posted asking about the safety and long term effects of VT Cosmetics reedle shot and I'm still unsure about that aspect. Because of those concerns, I decided to take a break after trying it even though I was seeing amazing results.

After a few weeks without using it, it seemed like the positive effects were gradually disappearing, so I decided to take the risk and start using it again.

In my case, I haven't had any issues with the spicules. It stings for about 10 minutes after application, but they've never gotten into my eyes. I also don't feel like they stay on my pillow or end up in my mouth or nose.

This time, I tried the collagen reedle shot and once again, I'm noticing a difference in my skin. It makes my skin look healthier, almost younger, plumper. It also seems to help my other skincare products absorb much better. I usually struggle with that because many products tend to sit on top of my skin instead of penetrating it.

I've tried countless skincare products, including the holy grail tretinoin (although I'm taking a break from it this summer and have been using the BOJ eye cream all over my face instead). I've never seen results as impressive as I have with Reedle Shot. It definitely becomes addictive once you see the difference.

I know it doesn't work the same way for everyone and some people don't notice much of a change. But my dehydrated skin absolutely loves reedle shot.

I had a binge eating episode because I was extremely hungry and feeling very low, both mentally and physically. PMDD and stress. It was pretty bad, ate lots of foods I shouldn't have and of course I felt absolutely terrible afterwards.

I ate all of those high histamine foods without taking DAO because I was waiting for my delivery to arrive and had completely run out of DAO supplements. I didn't take NaturDAO until the evening, before my last meal of the day when my histamine bucket was already completely full.

It didn't seem to help much at first because I had absolutely wrecked my stomach and felt awful about ruining my strict diet. However, something very unexpected happened.

My nose which is constantly (24/7) congested despite following a very strict diet and taking numerous antihistamines and supplements, suddenly cleared up. I could breathe better even throughout the night. Surprisingly, I didn't feel like I was dying after making such poor food choices and eating like a ravenous monster.

I still had my usual symptoms heart palpitations, puffy face and exhaustion, but overall I felt somewhat better. This is a huge win for me because I've already tried 3 different DAO supplements and none of them seemed to help at all. Somehow, NaturDAO actually improved my breathing.

I didn't even know DAO could help with nasal congestion. I thought it only dealt with histamine in the gut. And keep in mind, this was the very first time I had ever taken it, just one pill.

Now I'm back on my low histamine diet and for the first time in a while, it feels like there might be a light at the end of the tunnel. I didn't expect NaturDAO to do anything because it seemed like I was completely unresponsive to DAO supplements, even though my diagnosis is histamine intolerance caused by DAO deficiency. My DAO level was below 3.

I was diagnosed after undergoing many tests and seeing numerous doctors. It turned out that I have severe DAO deficiency.

What are your most annoying symptoms? Which ones persist the most and what are the first signs that tell you you're having a reaction?

* For me, it's heart palpitations. They're usually the first thing that lets me know I can't tolerate something I've eaten.

* I also have constant nasal congestion, especially at night. I can't seem to get rid of it, even while taking 3 different antihistamines.

* Inflammation and swollen lymph nodes are also common issues for me.

" Anxiety is another major symptom, particularly after eating.

* But the final boss of symptoms is insomnia, along with night time agitation.

These are the main ones, but I have many more - _-

I'm having a flare up right now that came out of nowhere. I was feeling better and doing my absolute best to stick to a low histamine diet and then all of a sudden I was hit with extreme hunger, a wave of severe depression and a general feeling of being on edge.

My skin and ears are itchy, my face is puffy, I'm sneezing, my nose is stuffed up and my eyes are red. I've taken antihistamines and all the supplements recommended by my allergist.

It's exactly seven days before my period and unfortunately I still get symptoms even though I'm following a low histamine diet and treatment plan. It's really hard and I'm so frustrated because my endocrinologist prescribed Vitex for me to take before my period, but I can't tolerate it. It destroyed my stomach, I had the worst heartburn ever when I tried taking it for a few days.

Does anyone have any ideas on how to ease the neurological and emotional symptoms associated with histamine issues before menstruation? It really destroys any hope I have of getting better.

Are there any other treatment options besides Vitex that have helped you?

I have been diagnosed with histamine intolerance due to DAO deficiency and for several years now I’ve been really struggling with food. I also have GERD which seems to be caused or worsened by the histamine intolerance.

Because of all these food related issues, I accidentally discovered that my symptoms improve significantly when I eat in a caloric deficit. This only works if I spread my meals throughout the day rather than eating one large meal. What’s even stranger is that even when I follow a very strict low histamine diet, I still experience symptoms if I eat too much food overall. I’m not referring to GERD symptoms in these case, but rather typical histamine intolerance symptoms such as heart palpitations, fatigue, anxiety and nasal congestion. It doesn’t really make sense to me.

Has anyone else experienced something similar? What could be the explanation?

EDIT :

* Because I’ve gotten so many responses suggesting liver issues, I want to mention that I’ve had extensive testing. My gastroenterologist initially suspected a liver problem and ordered every relevant test to check my liver, along with many others, including ENT, immunology and allergy tests. Everything came back normal. They only noted slightly sluggish bile flow, but said it’s nothing to worry about and didn’t recommend any treatment.

The only abnormal results were a DAO deficiency and a borderline vitamin D deficiency despite years of supplementation. Apparently, my vitamin D levels just don’t want to reach the normal range. *

This is a strange problem. I’m really into skincare, I know which products work for me and how to use them properly. I used to have very nice skin with no major issues. However, since developing histamine intolerance, the skin on my face has become very reactive.

For example, whenever I eat histamine foods, especially yogurt, I get large painful pimples on my cheeks and chin, always in the same places.

For the past few months, I’ve also noticed that my face looks slightly darker than my body, with a yellowish tint. I didn’t have this issue before. I’m naturally quite pale, so it looks unusual. The color seems to change throughout the day and becomes more yellowish after eating. I know it sounds strange, but this is really what I’m experiencing.

As I mentioned, I’m very consistent with my skincare routine and usually take good care of my skin, but this week I was very stressed, busy and exhausted, so I stopped using most of my skincare products. I noticed that my skin actually looked better and brighter during that time. When I started using only the basics again, my skin seemed to react to every product I applied and even after every meal...

By the way, I recently had my liver checked and everything was fine. I’m not sure what’s going on and it’s really confusing and frustrating. Has anyone experienced something similar or am I just going crazy?