I definitely have a problem with milk; what do I do now?

[KatyMac]

After weeks of dairy free I had a Mr Whippy good choice of 'challenge' I guess

Triggering tummy issues, joint pain, headaches, mouth ulcers & bizarrely earache!

So does it matter if it's an intolerance (likely) or an allergy (think symptoms are wrong)? Or should I just steer clear of 'dairy'

Ouch poor you! At least you know the trigger. Definitely stear clear if thats what it does to you!

Well I suppose

I just don't know if knowing if it's an allergy or not is important

Well, assuming it was an intolerance or an allergy what would you like to be different? I mean whether it was an intolerance or allergy you would have to avoid it.

If it was an allergy most likely you would get hives and/or anaphylaxis, in which case you would need antihistamine and adrenalin on you at all times but since neither of those things happened perhaps you can be safe in the knowledge that its just an intolerance and avoiding it is all you need do.

Although, you sound as though you want more than 'just avoidance' what else might there be?

(That was a genuine question as I dont know much about intolerances)

Oh no I can go with avoidance; I've had IBS for 17 years, I'm good at avoidance

I guess I have so many vague diagnoses I like a firm name ( I also have FM, CFS & hyper mobility)

Isnt dairy very closely linked with IBS, hyper mobility and possible the others you have mentioned? Ive read so, so many studies its daft but Im pretty sure they are ones that Ive seen before. I'll Google now, brb.

What is FM?

Im finding stuff about lactose intolerance and CFS, could it be the lactose rather than the milk protein it would make sense if its not an allergy. You can get lacto free milk, perhaps try that?

Fibromyalgia

It hasn't been mentioned by a professional before; I 'naturally' (by choice) have very little diary but it's never been absent in my diet totally

Which I'm starting to wonder if it should be

Oh fibromyalgia? Again lactose, link not good.

X posted then.

No wonder its made things like your knees hurt when you went back to it!

When I was tiny I never drank milk; I never really ate egg, I don't like cheese (well I like lancashire/cheshire but nothing else). I don't like yogurt,, custard

I like white ice cream rather than vanilla (less milk)

But maybe the few bits I do eat have stuffed everything up; never mind the hidden stuff in prepared food

Its in so much stuff, its really hard to get it sorted to start with a pen and paper, and reading the back of EVERYTHING is your friend. The first month is a bitch, but everything after that is fine. Honestly.

Stuff surprises you though, dont just pick stuff up and assume its ok. Sausages, bread, crisps (even salt and vinegar flavour!!) all have milk in, you need to find the brands that dont.

When I first started having to eliminate things from my diet a friend of mine (in a similar position) helped me out with her know-how. At the start I made mistakes, she said she did to. Now, she has about 10 recipes she just sticks to. Its boring but its happy.

I thought that was fucking depressing! Before all this kicked off I would aim to cook something Id never cooked before, each week. I loved cooking. Sticking to 10 (JUST 1O!!!!) recipes a week depressed me more than a limited diet itself. Im 6 months in now, and I realise how very wrong she was. Im now cooking just as much as before, experimenting just as much, and having just as much as success and fun and theres been way more food allergies added along the way.

Went on a bit of a rant there, sorry. Trying to make you feel a bit better.

I think this is the first actual evidence of a dietary problem; it's always been a 'feeling' or a 'suspicion' before now

Do I wait a few week and try again with something majorly milky to test it out

I thought you already had. Your OP said you'd be dairy free for a few weeks and you'd eaten ice cream and it all went tits up?

Yep but is one incident enough to self diagnose?

Could it have been a co-incidental virus/bug/separate events? Oh I don't know

I thought Id replied to this, no Im wondering if Ive sent the reply somewhere else in MN..... uh oh...

Anway, it said only you can tell. And make sure you keep a diary and see your GP.

Thanks - I am hoping to see a dietician

Hi Katie :) - sorry I'm too wiped out myself to write much of a reply, but 2 things spring to mind that could be worth you looking into

1. Have you tried drinking Lactofree milk ?? - it could be the lactose (milk sugar) that you are intolerant to rather than diary, so you might want to try that & see what happens ?? - & I agree it sound like intolerance for above reasons -

my DD has this, she can't drink milk or eat mild cheese, but can if they are cooked/hot, can eat some ice cream, but not others, can eat yogurt - she does have some lactase enzyme in her body, so can eat low lactose stuff - some people have none, so can't eat hot cheese, hot milk etc, but can drink lactofrre

you can also supplement the missing lactase, with things like Lactaid - other brands in health shops

1. Celiac Disease - I've read a lot of links with that & FM ( I also have that & ME) & I'm recently reading stuff on it that says its common & IBS & lactose intolerance can often be symptoms of it - I'm looking into it now for DD

hope that helps

PS - you can get tested for allergy via your GP, but intollerance wont show up in any tests, its diagnosed by symptoms etc - DD is diagnosed by NHS dietician & it affects her IBS as does chemical food additive, colours, preservatives & sweetners - additives affect my FM badly too;)

I think the course of action should be:

• Give up milk again & retest in about 6 weeks (just in case it's a coincidence)
• If that causes a reaction give up milk again for 6 weeks & try with lactofree milk

Either way I need to see a dietician; I don't think it can be coeliac as I recently had a colonoscopy and I think if I had been coeliac it would have been visible

Sounds like a plan :) - though I personally wouldn't do 2 separate exclusion diets - I know with both DD & myself that we both react very quickly if we've eaten lactose, 20 - 30 minutes, definitely no more than a few hours - so just doing the one exclusion & trying lactofree milk half way through should soon give you an idea

& Celiac wouldn't have been visible in your Colon, thats not the part of the intestines affected by it - google it & have a look, but if you;ve not been tested, it is only a simple blood test & from what I've been reading recently, seems it would be good to it rule out - make sure you load up on gluten food before your test though - thats the debate I'm having with DDs Drs now - we weren't told that & she wouldn't have eaten much if her stomach was flaring

Could you ask your GP for a lactose intolerance test?
Not sure whether you would have to wait long or not but this would confirm it or rule it out quite easily.
(Fell cheeky suggesting it as I am a self diagnosed lactose intolerant myself and couldn't be bothered with it....)

MeeWhoo - we've been through the NHS allergy testing system & know from that, they CAN'T test for Lactose problems - which is an intolerance, rather true allergy - they can however test for Dairy Allergy, as it's a true allergy to the milk protein - so its definitely worth asking about that

AS for your self diagnosing - we did pretty much the same thing, but DD just had it confirmed by the NHS dietician as a very likely cause of some of her IBS flare ups - by the time we had got her through the system that confirmed that, she would have been very ill indeed had I not already pin pointed the problem :)

Thanks Rockinhippy, I am no longer in the UK so didn't know they wouldn't test for it. Here in Spain they do the Hydrogen Breath Test, which, if you are intolerant sounds a bit like torture...