Coeliac Disease Help!

[richards30]

My mate had it diagnosed, two years later it was found to be a hernia causing the pain. It is very rare, but loads of people claim to have it.

I’ve had stomach problems and chronic prostitas for the last 16 years and constantly been told it was stress and nothing wrong with me, spent £500 on a private blood test and straight in with the coeliac diagnosis.

 

[richards30]

Good advice...coeliac disease is one of several related auto-immune diseases. I also have underactive thyroid, Vitamin B12 deficiency, all diagnosed afterwards.

Went private for bloods and got a 3 page result back on everything mate which was handy! Coeliac was the one that was miles high and everything else was normal

 

[richards30]

I've had coeliac disease for over 20 years, happy to advise in any way I can. Make sure that you see a dietician, your GP should be able to put you in touch with one.

Thanks mate. How did you find the first weeks/months of changing everything? I’m struggling with stomach cramps, flatulence and sickness and nausea? Can’t sleep because of it either

 

[Cityfan]

It's not my specialist area but it sounds like you should be getting referred to a gastroenterologist, it's what the old guidelines said . Blood tests can support a diagnosis of coeliac disease but you used to need a biopsy to confirm it.
I'd check with your GP.

Quality statement 2: Referral to a specialist | Coeliac disease | Quality standards | NICE

www.nice.org.uk

 

[Tourist since 1971]

Sorry to hear that. I have been coeliac for life. Diagnosed in 1963 when started on real food.
Its a much better life now that gf food is common place. But I do have a lot of sympathy with anyone with an adult onset - the change of lifestyle is a bugger. I have just accepted it for decades.
I would make 2 comments.
Firstly, in my experience coeliac is not a binary thing. Some people can tolerate more than others. Hopefully you are not one of the sufferers who have to have everything cooked in a Porton Down gf kitchen. Luckily I can take a bit if its hidden in a sauce or similar.
Secondly, its not the end of your life. You can still get gf Bakewell Tarts for god’s sake.
Get the best medical/diet advice and crack on. Good luck.

 

[Corky]

It's not my specialist area but it sounds like you should be getting referred to a gastroenterologist, it's what the old guidelines said . Blood tests can support a diagnosis of coeliac disease but you used to need a biopsy to confirm it.
I'd check with your GP.

Quality statement 2: Referral to a specialist | Coeliac disease | Quality standards | NICE

www.nice.org.uk

And get sedated for the endoscopy.

 

[youngbob]

Blood test result mate from a private doctor. Had a reading of 1753.9!! Apparently anything under 19.9 is negative.

Things might have moved on from when I was diagnosed (2012) but I'd get yourself diagnosed through the NHS, via endoscopy. I don't know if it's the case anymore but doctors basically consider endoscopies to be the gold standard. The NHS won't generally refer you to dietitians and other areas (DEXA scans, other potential intolerances, etc.) unless you've got their "gold standard" diagnosis.

For advice, every person is different. But here's a great place to go: https://www.reddit.com/r/Celiac/

 

[stoneblue]

Thanks mate. How did you find the first weeks/months of changing everything? I’m struggling with stomach cramps, flatulence and sickness and nausea? Can’t sleep because of it either

No, I didn't have anything like that. I don't actually recall feeing too badly pre-diagnosis although my weight went down below 9 stone (I'm now 11½ stone). I agree with a couple of other posters, you need to get an endoscopy to confirm. This is from Coeliac UK

 

[richards30]

It's not my specialist area but it sounds like you should be getting referred to a gastroenterologist, it's what the old guidelines said . Blood tests can support a diagnosis of coeliac disease but you used to need a biopsy to confirm it.
I'd check with your GP.

Quality statement 2: Referral to a specialist | Coeliac disease | Quality standards | NICE

www.nice.org.uk

Thanks mate, will make enquiries into that.

 

[Johnny Mars Bar]

My mrs is gluten intolerant. It's surprising where gluten appears that I would never have thought.

Lots of crisps and soy sauce for example.

It's a proper pain in the arse for her.