Has anyone experienced histamine intolerance?

[Mumoftwoboys123]

Hi everyone,

Just looking for other’s experiences please. I suffered from anaphylaxis recently, and was given three shots of adrenaline in resus before things settled down. They’re pretty sure it was anaphylaxis, high heart rate, low body temp, swelling, hives, breathless etc.

However, there was no obvious cause. Because of this the doc mentioned it could possibly have been caused by a histamine intolerance, rather than regular allergy. Has anyone experienced anything like this before?

Just looking for advice really and to find out anyone else’s experience of histamine intolerance - is it as severe as anaphylaxis or do you think this was more likely an allergic reaction?

Thanks! x

God that sounds scary, you poor thing. I have an inflammatory autoimmune condition and part of it is a histamine intolerance. I randomly flare up and get hives, rashes and hot flushes out of nowhere. I take a long acting antihistamine every morning and steer clear of most allergens to be safe, but it still happens. Histamine is contained within the body and certain environmental factors can cause a histamine response, so it's somewhat unpredictable.

@HighlyStrung1987 sorry to hear you are going through it too! Strange one isn’t it to try any figure out what might set you off!

That sounds really scary OP! I do have histamine intolerance but not nearly as bad as you’ve had!

Mine is related to early menopause, and apparently it’s quite common. I’ve had to stop doing my hair and drinking alcohol. I also carry piriton with me everywhere in case it randomly flares up.

Have they suggested any further tests for you at all?

@RoadToPlants yes it’s the second time it’s happened now, first was around 5 weeks ago so hoping it’s not a monthly occurrence! Well in an and e they were pretty sure it was anaphylaxis, but one doc mentioned histamine which does sound possible as I can’t pin it down to one allergen.
Ive been referred to immunology for allergy testing who I believe can look at histamine too but unfortunately the waiting list in our area is around 10 months.
do you find there are specific foods or meals that set things off for you or does it seem quite random? I’m struggling at the moment with what to avoid!

I’ve heard it mentioned a lot in long covid support groups. Not sure if that’s a helpful thing but there might be some advice via that route?

I had it two days after having a baby. Sounds like it was similar in severity to yours and very scary. Luckily I was still in hospital! Mine was related to breastfeeding and likely hormonally driven.

Alcohol is a big one for me so I just don’t bother now. I’ve had a few other random episodes that I can’t pin down. I’ve found it stressful at first but now I find it easier to cope.

I have this, no external triggers found. After a blood test they know I have hereditary alpha tryptacaemia but that's relatively common.

I've had two episodes where an ambulance was called but several more where I've felt my ears and hands swelling and have had fenofexidine and been ok

I think it might be triggered by getting too hot while exercising but that hasn't always been the case.

Saw haematology last week for a bone marrow biopsy to rule out mastocytosis so I'm awaiting results of that.

No one's mentioned the words histamine intolerance but maybe that's a given in this situation.

I have had Scombroid poisoning twice from eating oily fish

Yes, I’ve got MCAS but never experienced anything that bad. Alcohol, exercise and tomatoes seem to sffec5 me

i do know someone else with MCAS who is always getting rushed in with anaphylaxis but i don’t believe she’s ever been told it’s the MCAS as such causing it though I guess it could make her more susceptible to allergies. So with her it’s always been an allergy, but she has a huge list of stuff she’s allergic to but they’ve always found a trigger even if maybe she didn’t know what it was at the time. She she has a long list of food allergies, latex, the cleaning spray in various cafes.

Last weeks Zoe Science & Nutrition podcast was on histamine intolerance. I haven’t listened, so don’t know how relevant - but could be worth a look.

Thanks everyone for your help @Farfarfarfarfaraway I’ll give it a listen.

@Sandsnake thats’s interesting - I’m breastfeeding my 5 month old at the minute so wonder if there’s something in it for me too. How awful two days after giving birth - not what you need!!

My DH has a histamine intolerance. He takes an antihistamine daily but also avoids foods high in histamine like aged meat, ripe fruit, walnuts, blue cheese. You may find this site useful www.histamineintolerance.org.uk/about/the-food-diary/the-food-list/

He has been allergy tested and is only allergic to sesame which we would never have guessed. The allergy clinic referred him to a dietician who took him through a process with a limited diet and gradually introduced foods back in. On the whole for him it now means a low FODMAP, low histamine, gluten and dairy free diet. Took a bit of getting used to but he says it's well worth it for the reduction in symptoms.

Not anything like your anaphylaxis. I do hope it doesn't happen again for you OP.

I get hives regularly and believe I have histamine intolerance but never formally diagnosed, gave up on the medical profession for it to be honest as they weren’t that interested.

Tomatoes, chocolate, prawns and alcohol are triggers but sometimes not, I can go months without any trouble then a sudden flare up - I think it’s worse if I have a cold or am generally a bit run down so probably immune system linked in some way.

I tried to follow an exclusion diet before but found it more depressing than the actual hives.

I now accept it and manage it with antihistamines when I get an attack and a cream called Elecon on prescription which I use very sparingly.

I did purchase histamine blocker tablets from a health website but they didn’t have any real effect and are quite expensive to take daily.

Hope you get some answers ❤️

Yes it was totally random, nothing like that had ever happened to be before. It was managed with steroids as I’d keep getting a mild recurrence at let down when feeding. Human body is so strange! If you Google ‘breastfeeding anaphylaxis’ there is a bit of literature out there, but not much. Hope things settle down for you and you work out what’s going on

Yes I have histamine intolerance, have had it for around 6 years now. Not fun. Just came out of the blue, so it seemed, but I had already developed autoimmune thyroiditis (Hashimoto's) and it's not uncommon for histamine intolerance to develop.

At first I had no clue what was going on, then discovered some foods were triggering reactions some hours after eating. I ended up eliminating a lot of foods and lost loads of weight. I was almost too scared to eat. Found some information online about histamine intolerance and gradually began adding foods back. All was well for awhile then the problem flared up again.

Found a FB group and it seems Vit B2 deficiency is one of the root causes. I still have the issue though, and have to carefully manage how much histamine I am getting although that's tricky as you can never really be sure. My reactions will start about 4 hours after eating, nothing too serious but I will feel rubbish.

@CrunchyCarrot thanks for sharing your experience. There’s so much to it isn’t there, I think I’d better get researching!

DH mentioned his histamine intolerance to his anaesthetist when he was having surgery and she asked about allergies. She was really thankful he told her and said that she'd change some of the drugs she was going to use because of it. I remember seeing her eyes go wide when he said it so it was probably important to avoid potentially serious issues.

@Mumoftwoboys123 did this happen again for you ?

I have recently been diagnosed with idiopathic anaphylaxis and a low histamine diet has helped a bit but not stopped it. I don’t get any symptoms just anaphylaxis every few weeks. It’s a nightmare.

Histamine Intolerance
Hello Everyone,
Has anyone experienced skin sensitivity with histamine intolerance. I have become sensitive to make up, perfumes, hair products etc. Am I the only one? It happened around menopause time, I think. To answer ladies question about allergies. Yes, you can overload on histamine through eating the wrong kind of food, pollen , alcohol etc . Your symptoms will be unpleasant and you can pass out but apparently it is not allergy related. It is related to histamine levels in your body