Histamine intolerance

[Blahblahblahyadayadayada]

Has anyone experience of this and if so, how did you go about managing it? Wondering whether trying quercetin and or DAO supplements are of any use.

Thank you!

I have this. I try and adjust my meals so I don't include too my trigger foods and now definitely avoid Marmite - that was a massive trigger for my attacks. But the main difference has been to take antihistamine tablets everyday, and not being afraid to take more if I have an attack.

My worse symptoms are itchy throat and mouth, constant sneezing with fluid constantly filling my nose and sinuses (I'd blow my nose and it would instantly fill up again), then I'd struggle to breath as I guess the fluid is affecting my lungs.

These attacks can last between 20-60 minutes until the tablets kick-in.

I have to change the tablets as my body gets use to it, but currently taking Cetirizine hydrochloride as I can take up to three a day if needed.

I have this and take one Cetirizine hydrochloride in the morning and one in the evening. The consultant told me I can take up to 4 safely a day if I get wheezy. I thought I was going into anaphylactic shock as the wheezy episodes became worse and worse before diagnosis.
Crab and lobster are big triggers for me as are Prosecco and champagne. Alcohol with high histamine foods.
Pineapple was one for me too

Ah, so my symptoms are not mainly respiratory. Long story but I’ll try to keep it brief. Chronic urticaria started 2 years ago (ish) and I started to have what I can only describe as hot flushes but I’m not peri-menopausal. I was on up to 4 fexofenadine a day but it was almost as if the more antihistamines I took, the hives caught up as though I had antihistamine resistance if you see what I mean. Eventually had treatment with omalizumab which helped immensely. This year I’ve had headaches, bloating, growing number of foods I cannot tolerate, acid reflux (but worse with acid reflux medication). I have not needed the antihistamines so much for the hives as they’re much much better but I don’t want to end up with needing 4 tablets a day regularly.

Has anyone also experienced these symptoms?

I’ve had hives before when I have an ‘episode’ they come along with the wheezing.
I get them on my face and wrists.
Also had upset stomach/nausea and sickness and bloating.

Has anyone found other supplements to help? The list of foods to avoid is very extensive!

About 5 years ago I noticed a few rashes and hives often after red wine, or certain other foods. That turned into just constant itching, which I now remember I also had in my teens. I eventually found out about histamine intolerance and joined the dots with other issues I was having. I have quite specific symptoms to certain triggers, such as egg/avocado will make my eustachian tubes/sinuses seem completely blocked and cause ear symptoms, red wine and cashews or hazelnuts make my legs and wrists itch, similar things with lots of fruits, pasta, yoghurt. Horrible brain fog, tearful, tired, headache, blocked tubes feeling not myself at all. I tried to use a low histamine diet but its too much to eliminate so I just 'simplified', like for fruit I only mainly ate apples or berries, wine is more tolerable than beer, dairy was out, can do almonds and pistachios but not cashews or hazelnuts. Then I found that cetirazine plus an h2 blocker (ranitadine) solved the problem almost completely and was fine for ages. Then ranitadine got recalled and although I persuaded GP to kindly prescribed other h2 blockers, the pharmacy can't get them. So I tried DAOFood supplement and I was really surprised but it worked just as well. I tried a different brand NatureDAO this month which others found better but it bloats me and makes me feel unwell so I have reordered DAOFood. GP I expect thinks I am a complete hypochondriac if it ever comes up - I avoid talking about it because I know its not much recognised in UK - because this all sounds so wacky and they have never ever heard of it.

ScrapThatThen,
I recently got a private prescription for famotidine- it’s because ranitidine is recalled and although cimetidine is allowed for the GP to prescribe there is a supply issue. The GP could not prescribe famotidine on the NHS. H2 blocker plus antihistamine wasn’t enough when I had hives all the time but I’m willing to try for these symptoms.
I’ve all of a sudden become milk intolerant (not lactose intolerant- tried lactose free milk but still just as bad) and get quite a few headaches as whatever I eat seems to be bad (potatoes are ok so far). I already had proper allergies causing anaphylaxis but this is just too much and I can’t do an elimination diet.
I am considering trying the DAO so it’s useful to know that it has worked for someone else.

@Blahblahblahyadayadayada did the injections help? I am due to start them after 24 years of urticaria...

Yeah, they prescribed the cimetidine but it's not available and they wouldn't prescribe famotidine. They were open to trying to get to the bottom of things for me and talking to immunology and pharmacy etc but tbh I have no faith that there is anything else out there. I'm lucky my symptoms are relatively mild but I know some people have an awful time

I'm so glad I clicked in this thread. I have always had lots of allergies but I totally get so many of the things on here. When I get itchy, I ITCH. Top to bottom and like I could rub cheese grater all over me. It's often worse off a night. I have had life long sinus issues and even had surgery for the scar tissue. My Allergy's are bad but seem to be wise in the last two years and I also suffer from several moderate/severe auto immune issues.

I'm with Vodafone but how do I get the codes?

Triceratops I think you’ve posted on the wrong thread. Hope you get the codes.

QueenPaws, yes they did. Got interrupted due to the pandemic but once I completed the treatment it’s been much better. Still a chance of relapse and maybe this is how it’s manifesting in me but rare hives now. Hope it works for you.

@Blahblahblahyadayadayada thank you any rubbish side effects? I have cholinergic urticaria plus severe chronic spontaneous urticaria thanks for that body!

I didn’t experience any side effects. Hopefully it’ll work well for you too.
HotPatootiebootie have you ever seen an immunologist for your issues?
ScrapThatThen where do you order the DAOFood? Interesting how some brands work better for you than others. Trial and error I suppose.

I just get it from Amazon on subscribe and save.

Hi all, I found this thread super helpful as Im currently struggling from histamine intolerance (probably caused by my IVF treatment, my allergy dr suspects).

What he HASN'T been able to tell me though is how is this affecting you or your embryo during pregnancy? Has anyone here had histamine intolerance during your pregnancy? Was it managable? Baby ok? I'm worried about any negative effects this can have on my baby. I'm in first trimester of my first pregnancy and it's taken a lot to get here, so I'm worried about anything that could go wrong.

Some helpful links I've discovered: Check your DAO enzyme levels via Cerascreen, it's about £39 and takes some time but if your results are below 10 mg you probably have histamine intolerance. It's hard to find a provider who does this test at this price.

DAOfood for histamine pills are really good, I take 2 on an empty stomach 30 mins before and this has certainly alleviated my problems (less urticaria/hives, heart palpitations at night). I get mine at Amazon.

This is a really good resource: www.factvsfitness.com/ on histamine intolerance and how to treat it

@Blahblahblahyadayadayada how are you?

Hi- back on the fexofenadine as expected since but more like one a day or maybe 2 a day. Suppose I’m getting more itchy than hives. But still under my allergy team who have been great. How are you?
Never bothered with the DAO stuff as possibly not much evidence behind it but who knows- seems to help some people.

@Blahblahblahyadayadayada thankyou for your reply :) ive been given them and fadomatine i think its called. Does that really help with itching or take a while to kick in xx

Fexofenadine really helps but at one stage I was on up to 4 a day (before the Xolair treatments a few years back).

I've NC but I started the Xolair (was on this thread ages ago!)
It's been amazing and I can now exercise and have hot baths and wear a coat
They did say it looks like I'll be on it for life as I relapse every time they take me off it

@Blahblahblahyadayadayada are you still on that other treatment ? Just trying to see what could help me xx

No that was a course of 6 treatments. While it worked I was free of antihistamines and is definitely indicated if despite maximum antihistamines you are getting hives. You should be under an allergy& immunology team though if you’re getting problematic hives.

@Blahblahblahyadayadayada well its happenes since covid in feb i think. So hopefully will ease. Im due to go on holiday tomorrow. So ive been sooo worried. Hopefully they will ease… its just so annoying. They are like circles under the skin. X