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Any Uk Sufferers Out There?

whattodo

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whattodo Enthusiast
whattodo
Posted

I everyone, I would like to know if there are any UK sufferers out there. I have been told to go on a celiac diet but finding it very difficult. I shop in Asda and its range it not great. Please can anyone suggest good places for me to shop. I am so bored of this diet already and need a variety. I also find that i am spending so much more money on food, it this typical to this diet?

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nikki-uk Enthusiast
nikki-uk
Posted

Hello and welcome!! :)

I'm in the UK (London) and my hubby and son have coeliac disease.

I'm sorry you are finding going gluten-free so difficult :(

It is quite daunting at first and I know my hubby really struggled in the beginning - but it really does get easier with time, almost second nature even.

Do you have a Tesco and Sainsbury's near you? - they also (as well as Asda) have a 'free from' range .

I like to alternate my shopping between them for variation.

Was you diagnosed by biopsy?

I only ask because in the UK this means you are entitled to free prescription foods .

Also have you joined Open Original Shared Link? They provide you with a handbook listing a huge range of 'safe' foods

Another (UK) message board I use (click Open Original Shared Link) is very useful for specific UK brand questions or what are the best places to shop and eat near you

Feel free to ask any more questions you may have :)

whattodo Enthusiast
whattodo
Posted
  • Author
Hello and welcome!! :)

I'm in the UK (London) and my hubby and son have coeliac disease.

I'm sorry you are finding going gluten-free so difficult :(

It is quite daunting at first and I know my hubby really struggled in the beginning - but it really does get easier with time, almost second nature even.

Do you have a Tesco and Sainsbury's near you? - they also (as well as Asda) have a 'free from' range .

I like to alternate my shopping between them for variation.

Was you diagnosed by biopsy?

I only ask because in the UK this means you are entitled to free prescription foods .

Also have you joined Open Original Shared Link? They provide you with a handbook listing a huge range of 'safe' foods

Another (UK) message board I use (click Open Original Shared Link) is very useful for specific UK brand questions or what are the best places to shop and eat near you

Feel free to ask any more questions you may have :)

Hi Nikki,

Thanks for getting back to me. it is nice to hear from someone who has gone through the same as me.

I usually shop as ASDA but the free range in not all that great. Is tesco and Sainsbury better? I have so far only given blood and not had a biopsy. What do you mean "free prescription foods"?

Yes i have joined coeliac uk but not had anything through yet.

I noticed that your husband has Osteoporosis, did he get this through celiac disease. This whole disease is very confusing for me. What does the futer hold for me? Does it mean i might get something like this or can you stop it in time?

nikki-uk Enthusiast
nikki-uk
Posted
Hi Nikki,

Thanks for getting back to me. it is nice to hear from someone who has gone through the same as me.

I usually shop as ASDA but the free range in not all that great. Is tesco and Sainsbury better? I have so far only given blood and not had a biopsy. What do you mean "free prescription foods"?

Yes i have joined coeliac uk but not had anything through yet.

I noticed that your husband has Osteoporosis, did he get this through celiac disease. This whole disease is very confusing for me. What does the futer hold for me? Does it mean i might get something like this or can you stop it in time?

Were your blood tests positive??

To gain a 'formal' diagnosis of coeliac disease (in the UK) it's usually only accepted after positive biopsies.

If you are waiting for an endoscopy appointment it's ESSENTIAL you continue to eat gluten.

I CANNOT STRESS THIS ENOUGH!!!!!

If you go gluten-free now you will end up with a false negative on your biopsies.

Unfortunately in the UK, with the NHS, unless you get a 'formal' (biopsy proven) diagnosis you will find it very difficult to get any follow up care (e.g tests for osteoporosis, vitamin deficiencies)

When you recieve a diagnosis of coeliac disease through a gastroenterologist this enables you to order a (limited) amount of gluten-free foods (mainly staple foods - flour, pasta and bread) on prescription through your gp, which for us helps with the cost!! :rolleyes:

In the CUK handbook at the front is a list of prescribable products.

You also would be referred to a dietician who would be able to explain how to go about it.

Coeliacs are at risk of Osteoporosis (due to not absorbing calcium) and if you are diagnosed in adulthood you are supposed to be referred for a 'dexa' scan. Usually though, once gluten-free your body starts to absorb the essential nutrients again your bone density begins to right itself. Most newly diagnosed adults are prescribed calcium supplements.

Unfortunately for my hubby there were several factors that could have caused his osteoporosis as well as having undiagnosed coeliac for a long time (being on steroids being the main one)

It's an awful lot to take in isn't it?? :blink::)

whattodo Enthusiast
whattodo
Posted
  • Author
Were your blood tests positive??

To gain a 'formal' diagnosis of coeliac disease (in the UK) it's usually only accepted after positive biopsies.

If you are waiting for an endoscopy appointment it's ESSENTIAL you continue to eat gluten.

I CANNOT STRESS THIS ENOUGH!!!!!

If you go gluten-free now you will end up with a false negative on your biopsies.

Unfortunately in the UK, with the NHS, unless you get a 'formal' (biopsy proven) diagnosis you will find it very difficult to get any follow up care (e.g tests for osteoporosis, vitamin deficiencies)

When you recieve a diagnosis of coeliac disease through a gastroenterologist this enables you to order a (limited) amount of gluten-free foods (mainly staple foods - flour, pasta and bread) on prescription through your gp, which for us helps with the cost!! :rolleyes:

In the CUK handbook at the front is a list of prescribable products.

You also would be referred to a dietician who would be able to explain how to go about it.

Coeliacs are at risk of Osteoporosis (due to not absorbing calcium) and if you are diagnosed in adulthood you are supposed to be referred for a 'dexa' scan. Usually though, once gluten-free your body starts to absorb the essential nutrients again your bone density begins to right itself. Most newly diagnosed adults are prescribed calcium supplements.

Unfortunately for my hubby there were several factors that could have caused his osteoporosis as well as having undiagnosed coeliac for a long time (being on steroids being the main one)

It's an awful lot to take in isn't it?? :blink::)

Nikki,

It sure is alot to take in all at once. I would like to that you and everyone for your great advice.

Well at the moment i have not been diagnosed with anything else other than diverticular disease. I went back because the pain was not the symtomatic pain for that disease. The specialist suggested it is celiac or ibs, but reading on here it sure sounds like celiac.

Unfortunately when i have given blood i had been on a relatively low gluten diet for the diverticular disease. However the pain was constantly still there when i did give blood. i understand that the intestines heal themselves after time but i presume because i still have pain then there is still something wrong. I see your point on continuing with the gluten till the tests have been taken but im at that point where i need to stop the pain. My numbness of my face is more concerning to continue with gluten.

im not being funny but in a way i hope it is positive, just so i can blame something for giving me the pain. It is pretty worrying not knowing what the pain is. I am however seeing a dietitian this thursday and maybe they can help suggest good diet.

Thanks

Jason

whattodo Enthusiast
whattodo
Posted
  • Author

Nikki

In uk is it possible to get a vitamin booster injection from your doctors. I am worried that i am not absorbing any vitamins and my facial numbness is getting me a little worried. Its 7 weeks till i get my blood test but fear i may be causing some permanent damage. I do take vitamins but i am still very weak and head feels so heavy.

gfp Enthusiast
gfp
Posted

whattodo: Like Nikki say's its difficult to get any treatment or scans for anything peripheral without the positive biopsy...Personally I think the biopsy is completely stupid (since you basically have to deliberatly damage yourself to get a positive result (what happened to do no harm?)...

The thing is its hard but not impossible to get treatment, it depends on YOUR GP...

If you get a negative biopsy it will be harder again.... because they won't say "oh but its invalid she wasn't eating gluten" they will just look at the test result...

You can of course work around stuff... for the dexa scan you could just present a history of fragile bones etc. I'm guessing your a guy so female menopause if off the list for an excuse for the scan...

There are some other options... that is you could present yourself to a Dr. outside the UK... with emergency symptoms...

and simply take back a note saying you had been tested for celiac disease.... and found positive... for instance I know a couple of Dr.s in Paris who would run blood tests only and diagnose and write a letter... saying you have celiac disease if the tests are positive.

If you see the MD in the morning you can have the results same day....

(Yes I realise that sounds bizarre to anyone used to the NHS)...

You could also for instance try and find someone on the UK lists witrh a progressive MD...its not that a MD can't diagnose on blood tests alone its just they are pushing the envelope a bit....

The advantage of this is you get the tests the same day although you would still need to be eating gluten.

If the NHS actually worked properly the biopsy wouldn't be so bad but with waiting times etc. it means your on the waiting list just to get the blood tests then wait for the results then an opening for a biopsy...

and you need to be eating gluten throughout....so if you had no idea what you had and the Dr. could take blood that day and have a biopsy for you tomorrow and you didn't know about celiac disease so you had been eating gluten anyway then the biopsy might make sense...

I personally honestly couldn't eat gluten for 3 months to make sure a biopsy was positive...

CUK are rabidly against diagnosis other than biopsy... since it is their aim to support their sponsors (the gluten-free food industry) in making gluten-free food available on prescription they need to limit those diagnosed to a reasonable amount.... the reason for this is the same as you8 read about the NHS paying 5 quid for a bottle of Asprin... you can buy in boots for 30p....

The NHS pay several pounds per gluten-free loaf (I think its just under 5 quid) you can buy at Sainsburies or Asda for 1.50...

So they need to keep the coeliacs as a minority... imagine if all the coeliacs in the UK were diagnosed .. its currently less than 1:10 ...

The second reason you need to know about CUK is... They do not accept any non GI symptoms of celiac disease. Your numbness in your face for instance will be dismissed... and they are also against gluten free meaning gluten free... again for the convenience of their sponsors...

The problem here for you is that the numbness sounds like neuropathy ... CUK don't accept a connection... (well they just refuse to acknowledge the research .. its actually quite strange howe they manage to circumvent it since they actually fuinded some of the research and then decided not to use it since it didn't fit their purpose)

Since all evidence shows that the CUK definition of gluten free (<200ppm) is more than enough to trigger neuropathy your in a bit of a mess...

Ok sorry this is a lot of info all at once... but

Open Original Shared Link

The reason I point this out is the most advanced research in the UK and probably worldwide into neurological aspects of celiac disease is actually done at the Royal Hallamshire....

Its all published, per reviewed etc. so quite how CUK manage to just ignore it and advise the NHS is as I say bizarre?

shopping....

Jason many of the supermarkets carry different ranges, some Sainsburys for instance carry far more than others in specialist gluten-free stuff...But honestly with your numbness you shouldn't be touching the majority of gluten-free bread.. only the stuff say's wheat free!

GP wise there is a GP with 3 celiac disease kids... her practice is I think out in the direction of Langho..(first name Margaret) she might be a good 1st choice if you can somehow swing it to be inside the practice area...

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nikki-uk Enthusiast
nikki-uk
Posted
Nikki

In uk is it possible to get a vitamin booster injection from your doctors. I am worried that i am not absorbing any vitamins and my facial numbness is getting me a little worried. Its 7 weeks till i get my blood test but fear i may be causing some permanent damage. I do take vitamins but i am still very weak and head feels so heavy.

I can't top gfp's response for info :lol: -but as he says it really is down to how good your gp is.

It might be a worth a try asking him about vit injections (but I'm not confident :( )

Even though my hubby was 'properly' diagnosed with celiac disease he couldn't get any docs to take on board what we felt was peripheral neuropathy <_<

The good news is after a couple of months gluten-free it slowly went away

In the mean time get yourself some Vit B12 (I'm not sure ,but have a look in a health food shop - they might do a liquid one which would be easier to absorb than the tablets)

I must say my opinion of CUK is much the same as gfp's BUT the handbook IS very helpful in the early days whilst you are learning what's what :)

jambo massive Apprentice
jambo massive
Posted

Must say this topic has given me some very good advice, Thank you

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