Histamine intolerance

[Gumbear]

Just wondering if anyone has any experience of this. For the past three years I've had a number of strange symptoms, including sinus tacchycardia, facial flushing, unexplained itchy rashes on my arms, reflux, muscle twitches, tingling tongue, pins and needles in legs/feet, cotton wool spots in one eye, occasional bouts of gastritis, periods of vertigo, sinus pain and pressure, and really bad anxiety. I also sometimes get really hot when I eat, which I thought might be the start of hot flushes but recently realised it only happens when I'm eating. I get tachycardia on standing amd after eating. I also have Raynauds.

I've had loads and loads of tests and there is no explanation for any of these symptoms (except anxiety as feeling ill all the time has made me anxious!). I've been diagnosed with sinus tachycardia, orthostatic intolerance and benign calf fasiculation syndrome, with the rest of the symptoms unexplained. I've had blood tests, MRIs, gastroscopy, nerve conduction tests, loads of cardiology investigations.

I've just been reading about histamine intolerance and lots of it makes sense. I'm going to try a low histamine diet, although feeling a bit daunted as it's so restrictive.

Would love to hear from anyone who's experienced similar or is on the diet.

I'm going through all of this right now, Post Covid. Every single symptom and diagnosis you've mentioned.

I also had insomnia so took Nytol. The next day I felt the best I've felt in months with all symptoms reduced or gone. Just so happens Nytol is also a very strong AntiHistamine.

I am reacting to all sorts...perfumes, cleaning products, medications, foods
etc.

I'm reading up about Mast Cell Activation Syndrome and Histamine Intolerance. I definitely think there's something in it.

Yes I have this and mast cell activation disorder. All your symptoms sound familiar.

i manage it with antihistamines (fexofenadine works best). Type 1 + type 2 antihistamines together are best management but think all type 2 are prescription only.

i also take sodium cromoglicate tablets which are mast cell stabilisers.

i take quercitin which is a natural mast cell stabiliser.

look at low histamine diet.

stress does not help.

alcohol is really bad especially champagne. Clear spirits have less histamine.

i find fermented foods really trigger me. I think it’s different for everyone.

tbink of it like a bucket of histamine and as yours slowly fills up from food / drink / chemicals / climate / stress when it’s full that’s when it kicks off. So you are trying to keep the load down.

The most unwell I’ve been is in resus and the most well I have been is feeling completely normal so it is totally manageable but can feel a bit like a minefield trying to identify triggers.

Not all thise symptoms but certainly the tachycardia, vertigo, gastritis and getting hot when I eat.
Anti histamines give me palpitations and make my tachycardia worse. (I have SVT).

I already take fexofenadine for severe hayfever and also a nasal spray with azelastine and fluticasone.

I will look into quercetin, thanks. Are the sodium cromoglicate tablets prescription only?

Interesting that other people are also mentioning getting hot when eating. It's really odd!

Does anyone else get the tingling in feet? And the tongue? My dentist gave me a mouthwash and has referred me to a dental hospital. I'm assuming the tingling feet (mainly the right) is because my calf muscles twitch all the time.

One of the issues is that you end up seeing separate doctors and specialists for each thing, so no one puts all the symptoms together. No doctor has ever suggested a histamine problem to me, I just happened to come across it.

I'm on day 2 of the low histamine diet. I've had a bit of a headache but possibly because I'm not drinking enough. My tongue is really bad today as well. I wonder if symptoms get worse on the diet before they get better?

Has anyone else had the eye issue? I had a cotton wool spot on my retina (basically an area of swelling that has caused what seems like a permanent line in my vision) and no one can explain it. I've had so many tests done and they can't find anything wrong or any explanation for it. Finding it really stressful as I'm worried about it happening again and losing some vision.

Also, I'm finding a lot of the low histamine diet advice is contradictory. I found an NHS list that said no milk but cheese like mozzarella amd ricotta is OK whereas most other lists say milk is fine. Some say grapes are bad and some say they're fine. Same with eggs.

I'm going by the SIGHI list as that was the one recommended by a dietician to someone else I know.

So I'm about a week into the diet now and not noticed any difference. Except I think I've lost weight and the food is so bland! I'm going to give it another week and if there's no difference I'll just go back to normal.

Interesting. I'm lurking as I looked at the diet and thought it looked really restrictive.

Yes and it's really bland. I've been really strict with it as I wanted to make sure I tried it properly but after a week I'm already tempted to give up as I haven't seen any changes at all.

I actually think my symptoms are more likely to be down to stress and anxiety.

I think it's worth trying the diet @Gumbear, at least that's another thing to rule out. But stress and anxiety do have a load of odd symptoms and, as you say, being ill can make that worse.

Yes a lot of the histamine intolerance symptoms are the same as anxiety symptoms so it's hard to tell. But so far the diet has made no difference at all and I'm on day 9. I'm only going to do another few days as its too restrictive and making me really sad and fed up!

Hello, just wondering how everyone is getting on with the low histamine diet as I have seen my homeopath who thinks I'm a bit overloaded with histamine following a gastric infection . I know this thread is a bit old!

What about DAO tablets? Help to break down histamines apparently. I’ve ordered some after hearing about them from another sufferer.

I tried it for 2 weeks and then had to stop as it was sapping my will to live! So dull and boring and made no difference to my symptoms.

I've since found out that I had an h pylori infection so have been on strong antibiotics and feel significantly better. I also found I felt better over the summer, possibly because I felt less stressed.

I think a lot of my symptoms are down to stress and anxiety rather than an actual medical problem.

I'm glad I found this thread. I don't have all of the OP's symptoms, but I'm also very aware that when I eat ketchup (contains vinegar I think) I can get itchy, around my face, nose and tongue. Certain cheeses make me itchy, and red wine does the same. Also Prosecco/champagne and wine in general. Chocolate (I think) gives me minor tongue ulcers. It's a minefield. The low histamine diet is something I could never do, so I guess it's just avoiding the triggers where I can.

Oh and continual sinus pain/allergic rhinitis.

Thanks for update OP and glad you found the source & feeling better and less stressed . I've been doing the diet for 3 days and finding it really hard !!! But I have realised I mainly have high histamine foods so i can probably cut down on a few .

Same with wine & realise that certain spices just make me feel really sluggish , also I eat huge amounts of cheese , and tomatoes:( - they are my favourite.

I've histamine intolerance (started around 5 years ago) and have to avoid many foods, or sometimes just make sure foods are very fresh, if not they'll trigger symptoms. Avoiding high histamine foods means the symptoms go away, in my case. However there's no real way to be 100% sure that the food you are about to eat doesn't have too much histamine for you to tolerate. I tend to buy frozen fish but every so often, I get one that triggers an attack a few hours later. No way to tell beforehand. It's discouraging.

I have to avoid alcohol, vinegar, anything aged like a strong cheddar (although I can tolerate a little mild cheddar now), mushrooms, anchovies, have to take care with cooked rice that I eat it right away or put it in the freezer. Can't eat any starchy things left for a day in the fridge. On top of that I also have to avoid high oxalate food so it's really fun.

Recently I was able to have Quorn mince again!! Bought frozen and cooked from frozen. I get stupidly delighted over anything I can re-introduce!

What happens when you eat these foods ?
I have had a gastro infection which seems to sparked something off that was lingering in the background ( eg I've never been able to tolerate red wine it makes me cough & flush )
Did you do the elimination diet to begin with or just cut down on?

Could you tell me where you got them, please?

@Gumbear

Being physically ill due to stress is absolutely “an actual medical problem” - & one that’s difficult to solve. Stress can do all sorts of weird things to the body; & can be harder to fix than more concrete problems. I hope that you’re feeling lots better now.

Menopause caused a lot of these symptoms for me. I'm super sensitive now. Having two dogs and a cat don't help. I take fenofexadine for allergies, beta blockers for palpitations and am careful with my diet.

@rubyslipperss I get a rapid fast heartbeat where my heart thumps, I get increased tinnitus sounds, my head feels buzzy and I feel dizzy. I don't get rashes or anything but it isn't pleasant and always starts around 4 hrs after eating/drinking something with histamine.

Yes I did an elimination diet which calmed everything right down, then slowly introduced foods and that went OK for awhile. Then the problem started again so I repeated but I've not been able to reintroduce much at all without reactions starting so I have quite a restrictive diet. I tried DAO but that did nothing.

Literally just now was reading about a supplement (extract from green tea) that is called EGCG and is supposed to be good for histamine intolerance. Not tried this myself and am wary of it as I cannot drink green tea (nor black) due to getting histamine reactions!

This might be a useful link I'll read it myself later

https://www.mumsnet.com/talk/menopause/5018389-histamine-intolerance-and-hrt