Food intolarances

[Lizzardly]

3 or so years ago, with no support from a useless GP surgery and an totally unsympathetic and useless rheumatologist (I've since changed to someone much better), I took myself off to the London Lupus Centre, where I met the lovely and wonderful Arvind Kaul. As well as listening and believing me, giving some advice on how to get better NHS help, diagnosing sticky blood and a couple of other things, he threw one idea at me that, I'll confess, I was very sceptical about. Have you looked at reactions to food, he asked. He said quite a few of his patients had reported improvements to cutting out certain foods, such as gluten and tomatoes. The latter may sound random but bear with me.

By a route I won't bore you with, I came to land at a place called histamine intolerance. Being prepared to try anything, I decided to give it a go. Although, understandably, it's not recommended with talking to a doctor first, I started with s strict elimination diet - rice, potatoes and some veg, then started adding back. My life has changed so much since that time. Although I have a stupidly restricted diet, I can now sleep, have many fewer headaches, don't have nearly as many hot flushes, the pain in my hips is under control, I'm not itching all night (the inside of my ears used to drive me mad!), generally feel more awake and probably a load more things.

Lupus related? As I said to a GP recently, it may well be coincidence but then Lupus patients do have one hell of a coincidences, don't they? My rhematologist does agree that there is likely to be a link, possibly something to do with mast cells, but that there is very little research on the subject. She prescribed a stronger anti-histamine (fexofenadine) and I know it works. If I forget to take it I know it by the middle of the night and if I don't then get up and take it, or in a foggy state (still) don't put two and two together, I'll regret it for a few days afterwards. So there has to be something in it.

Has anyone else come across this?

If anyone is interested, my starting list was this one

mastzellaktivierung.info/do...

There are of course some exceptions but I'm ok with 0 rated foods, 1s in moderation but forget anything 2 or 3. And of course being veggie doesn't make life easier.

[PMRpro]

There are a couple of people on the PMRGCAuk forum who discuss mast cell reactions.

[Lizzardly in reply to PMRpro]

I'd never heard of that! It's all too easy to read something into nothing and although some of the symptoms are familiar I don't think that's in my basket of problems, although I do have eye pain, eye centred headaches, hot sweats, painful hips. I'll follow it up with the rheumatologist, theoretically next month but we'll see!

[PMRpro in reply to Lizzardly]

I don't think they link the PMR and the histamine reactions - I just meant they are there and you would be welcome to visit us and ask for contacts to have your own private forum using the Chat option. We couldn't leave it on the main forum at the moment as it is manic to moderate anyway!!! But as a meeting place to find others - no problem.