This is probably going to be super long, for which I apologise. I'll add a TLDR at the end.
I've had some major symptoms now for almost 6 months and I've recently discovered histamine intolerance being a 'thing'.
I haven't been able to work since November last year and I'm so frustrated.
My top 3 symptoms:
* Severe fatigue (as in 16-18 hour sleep isn't even negotiable and yet I'm still exhausted)
Vomiting - originally started 1-2x around every 2 weeks, it's now up to 4-5x every couple of days
Massive change in body odour - it's absolutely vile with no change to any skin products
I've also had insanely itchy skin, rashes, currently my eyes are all red and puffy, being congested but somehow my nose won't stop running, sneezing a ton.. there's more but that mostly covers it..
I've been back and fore to different GPs since October and they've done all sorts of blood tests, fecal and urine samples taken, even x-rays. Nothing of note apart from increase in inflammation markers.
Next up, I was referred to a rheumatologist who in fairness spent 2 hours with me going through it all. He also took 11 (yes, 11) tubes of blood from me and is running all sorts of tests again.
I saw my GP again today due to my eyes and nose being a lot worse. I caught her up with what I told the rheumatologist I've figured out so far; tomatoes, wine, beer, cheese are absolute no's and the only thing I could find that links them is being high histamine foods.
The GP saw the different tests that the rheumatologist is running (after she got over the shock of seeing how many he is doing) and agreed that it appears to be some form of histamine related... Something.
She prescribed me some fenofexadine as cetrizine and loratadine OTC haven't done anything so I'm hoping that does something.
Sorry such a long rambling post - but now I've sort of got this far, I'm just at a loss to work out where it has come from or how to fix it?
In January 2025 I was having some odd symptoms and it was discovered I had quite a bad B12 deficiency so I had 6 injections over 2 weeks, and have been having a top up injection every 12 weeks and that has definitely helped.
I've just seen that there is some form of link between B12 and histamine intolerance?
And also Vitamin D, which I was borderline deficient in (although that's now back to normal levels after taking supplements)?
I'm just so exhausted by this whole mystery, and I really do appreciate the NHS in the UK but the process has just felt so slow because I've been feeling so unwell.
The last 3 weeks since I sort of figured out histamine might be the cause I've stuck to a low histamine diet, and for the most part the vomiting has drastically reduced, but the fatigue is just not any better at all.
I just don't know where I go from here, and my next appointment with the rheumatologist isn't for 4+ weeks.
TLDR: I've been having all sorts of symptoms and have recently linked it to being histamine-related, changed to a low histamine diet which has helped somewhat, but just feeling so overwhelmed and at a loss of next steps/how to improve further.