Histamine intolerance, anyone with any experience of this?

[Freeasabreeze]

Does anyone suffer from this? What are your symptoms and what do you do to treat it?

I've struggled with digestive issues for many years but since being in perimenopause (8 years so far) my digestive problems have really ramped up for the worse.

Despite doing everything I can to ease the issues such as following a low fodmap diet and avoiding the foods I know upset me such as diary, high fodmap foods, gluten, eggs, chicken, legumes, super high fibre foods, artificial sweeteners etc, I still struggle.

Because of my limited diet and the need to eat a good level of protein in peri I often struggle to know what to eat sometimes as good quality meat is so expensive, so I do turn to canned salmon around once or twice a week but I find that every time I do I will end up feeling so very nauseous. Sadly nausea isn't an uncommon issue for me as I've been suffering a lot in peri as well as acid, burping etc and I do have a very unpredictable bowel (sometimes constipated then diarrhoea or urgency) but all tests (colonoscopies, a recent gastroscope, gallbladder scans, bile acid malabsorption scans etc are all clear) but I am finding that I feel so very nauseous after tinned fish and feel as though it repeats on me for hours afterwards.

I'd actually been having a couple of good days until a few hours ago. I had run out of sliced meat so opted for a small can of salmon for lunch and boy do I regret it, Since then I have such a deep gnawing nauseous feeling and feel as though I may have diarrhoea coming on (this sometimes happens with this issue too).

Google tells me that it could be a histamine issue. I do suffer from a stuffy nose on/off (although clear right now) and stingy eyes etc but I never suffer from hives or a major allergic reaction feeling, although I often have a very sore tongue. I do suffer with very itchy skin too but it's dry so I have always put that down as the reason for my itchiness although I often have a very itchy scalp and my hairdresser says there is nothing actually on my scalp.

Does this sound like a histamine issue? I am going to stay off fish for a while to see if I feel better.

Do you know how your iron levels are? I believe there’s a link between low iron and histamine. Iron produces an enzyme that regulates histamine.

I haven’t experienced digestive issues but have spent a year trying to work out what was causing my very widespread intense itching and constantly feeling allergic (GP prescribed big doses of antihistamine but even that didn’t work). My symptoms have improved noticeably since taking a ferrous sulphate every morning with Vit C and B12. I am 54, post menopause.

That’s interesting. I was very iron deficient for years with ferritin levels of below 3. I ended up with infusions in 2022 and since then I’ve been told all my levels are within range and therefore normal.

ferritin is 61 ng/mL
folate 3.3 ug/L
HB 148 g/L

I ended up with the infusions due to gynae issues but also because I can not tolerate any oral iron (tried them all) without them massively affecting my digestive issues.

Do you think menopause caused your issues? I often wonder if my perimenopause has triggered my health issues.

It does seem this started after my periods stopped. Dermatologist has taken loads of different blood tests but I havent heard back yet. They didn’t test hormone levels though, as far as I know. She did say that it could be related to ‘the change’.

I have also always had low iron but for some reason hadn’t taken it for a while. Then I read about the iron and histamine link so thought I’d restart taking iron daily and it’s definitely, finally helping.

I hope you’ll find something that helps you.

Thank you. So that seems to be another thing dear old perimenopause has decided to throw my way!

I was ok (ish) with Spatone so will try those again and hope for the best.

Could you see a dietician? (Not a nutritionist)

If it helps my digestive issues calmed down after menopause and a course of mounjaro.

Sadly I can't afford to see anyone privately.

I'm desperately hoping to feel better post menopause as I have struggles so many aspects of my health since I've been on perimenopause.

OP I did buy some DAO to try but the iron tablets seemed to improve things. So, I don’t know whether this might help but may be worth researching if you haven’t already done so.

www.straight.com/guides/health/best-dao-supplements-for-histamine-intolerance/

Yes, I have histamine issues. One of my doctors told told me to take 2 fexofenadine a day. I get a red face when I eat. Do you have ME or any neurodivergence? I do and Histamine issues are common with these conditions. It was actually my ADHD psychiatrist who told me to take the fexofenadine. If i don’t take it, I feel agitated. I also get a runny nose but nothing too awful thank goodness. I eat whatever I want and I have not even tried to work out what foods are causing my red face.

Everything got better for me within 3 days of adopting a low histamine diet, DAO enzyme before meals, and 500mg quercetin twice a day. There are other things you can try but this really helps me.

It's worth doing it as an experiment for a couple of weeks and you can see how you feel. Look up what you can and can't have on a low histamine diet. No more tinned fish, that's for sure.

That's interesting, I was diagnosed with ADHD last year. I didn't know there is a connection.

I will look up fexofenadine, thanks.

I will go on a mission today to read up as much as I can regarding low histamine diet and everything you mentioned, thanks.

Glad that helps. I take 2 x 120mg fexofenadine. You can buy it anywhere. I think it may say on the instructions to only take 1 a day. Obviously start on 1 or actually 1/4 or 1/2 to check that you tolerate it.

Do you have any hypermobility? Apparently hypermobility is also connected to ADHD and sensitivity to medications - hence my psychiatrist always advised me to start on 1/4 tablet when trying a new medication. However, I seem fine with all medication..

I will go and get some today and give it a trial, fingers crossed. I will definitely go low dose to start as I often don't tolerate medication that well.

I have been very hypermobile all my life and I am convinced that I may possibly have EDS (I am certain my mum has it too and ds has regular knee subluxations) but I once mentioned it to a GP who laughed at me and said everyone is a little hypermobile in some way or other, he made me feel stupid and it put me off asking anyone else. I honestly don't feel anyone takes me seriously, my gastroenterologist now states 'Health Anxiety' at the top of my yearly follow up letters, I really don't have HA, I am just fed up suffering from so many physical issues year in and year out.

Folate of 3.3 would be out of range here. It could be suboptimal even if your area accepts it as “normal”. Low folate can make you feel awful. Agree that perimenopause seems to ramp up these issues, mine have really taken off in my 40s.

OMG! I feel your pain. About 3 weeks ago, a GP sent me to A&E. The nurse I saw there didn’t quite tell me I was a neurotic timewaster but she was rude and made it very clear that she didn’t want to waste another second on me. She wouldn’t let me ask her any questions even though she hadn’t addressed one of the reasons why the doctor sent me to A&E. Trouble is, I am over 50, female, I look the picture of good health (even though I have a serious chronic illness) and so I’m often dismissed. She even ‘diagnosed’ me with diabetes, even though if she had bothered to spent 5 seconds looking at my blood test results, she would have seen that I don’t have it because my diabetes tests are plum normal. I came out of there feeling upset and angry and none the wiser about what my problem was. I wrote a letter of complaint and the consultant in charge of A&E phoned me to apologise profusely.

As for your hypermobility and possible EDS, I would urge you to see another GP and request a referral. Go there with a print out from an EDS website and tick off the symptoms you have. I had a very close friend with EDS and it is a serious condition. She managed it by staying very strong and fit but as she got older it caused more and more problems. When I was last saw her, she was 64. You will get a better understanding of how to manage it if you get specialist input. EDS is also closely linked to ADHD and autism.

Histamine intolerance is often due to MCAS - mast cell activation syndrome. MCAS and EDS often happen together. Many GPs are unaware of MCAS btw, it has only been recognised as a diagnosis for a few years in the UK.

Really? I'll have to look into folate more, my GP just signed it off as 'Normal no action'.

I'm despising my perimenopausal years I have to say.

It's so frustrating isn't it? I'm the same, I look ok so I'm sure medical professionals dismiss my concerns. I've taken to going to my GP make up free and pulling my hair back in the hope my looks may reflect just how rotten I feel, ridiculous I know but I'm getting desperate as no amount of words to describe how I feel seem to make a blime bit of difference.

And don't even get me going regarding A&E, recently spent 26 hours in a corridor with my elderly mum. Compassion fatigue is definitely a widespread thing nowadays.

I may try getting a consultation with a private GP in the hope they may have the time to listen to me more?

Thank you. I'll look into that too.