Do you have Coeliacs disease?

wiccanlou

I have just found out they are proposing to stop prescribing the foods for those with this Auto Immune disease. If they do this it will more than likely have a ripple effect and the rest of the country will follow.

My partner is just starting the tests and then the diet to see if he has Coeliacs and if it is proven that he does have it we will literally not be able to afford to buy gluten free foods for him. For example a 400g loaf of gluten free bread can cost as much as £2.45 six times more than its 800g normal loaf which makes him very ill.

There is a petition. http://epetitions.direct.gov.uk/petitions/27968

gingergee

Thats shocking!!! I know loads of people with it!! Some can just afford to eat as it is!!! Can the bread not be home made??? Know it may not be practicle for some, but im willing to bake some for those i know xxx

LadyMorticia

I don't have Coeliacs (I tested negative) but I do have a gluten-intolerance as you can be intolerant to gluten without being Coeliac (and I have IBS) so I'm not eligible for food on prescription, but I think it would be horrible if they stopped allowing foods on prescription for those with Coeliacs. The foods are so expensive and we are barely able to afford them, but we have to because otherwise I become really ill. With Coeliacs, everytime you eat gluten, it damages your intestines so if you weren't able to afford the gluten-free foods, then you'll be doing yourself some internal damage.

I'll happily sign the petition.

corbyboy

My wife was diagnosed with Coeliacs disease a few months ago. She decided to avoid the "gluten-free" route and it has definitely been a good decision.

You don't need to have gluten-free bread or gluten-free pasta, just avoid it all together. You can eat plenty of good food while avoiding gluten.

On the plus side, since she was diagnosed, both our diets have become incredibly healthy.

purple.sarah

I signed the petition. I think it would be wrong for the NHS to remove gluten free prescriptions, surely unmanaged Coeliacs disease would cost them more. Gluten is in a large range of foods and can be dangerous to people with Coeliacs diesease. This is about giving someone with a serious illness the support to live a normal life.

Just a money saving gluten free tip, my parents have a gluten intolerance not Coeliac disease so aren't entitled to prescription food. I work in a big supermarket and have often helped them by shopping after work in the evening and getting cheap gluten free bread from the reduced section. Just use it quickly or freeze it and it's fine. So look out for that too.

purple.sarah

corbyboy wrote: »

My wife was diagnosed with Coeliacs disease a few months ago. She decided to avoid the "gluten-free" route and it has definitely been a good decision.

You don't need to have gluten-free bread or gluten-free pasta, just avoid it all together. You can eat plenty of good food while avoiding gluten.

On the plus side, since she was diagnosed, both our diets have become incredibly healthy.

The point is "She decided to avoid the "gluten-free" route" I'm glad that worked for her but there's a difference between making that decision and having it made for you because you can't afford gluten free food.

rogerblack

wiccanlou wrote: »

I have just found out they are proposing to stop preFor example a 400g loaf of gluten free bread can cost as much as £2.45 six times more than its 800g normal loaf which makes him very ill.

Addressing solely the moneysaving aspect of this.

Prescription food is _extremely_ expensive - even compared to Tescos free-from range et al.
It would probably make sense to reduce the bill by having it available through food retailers, not the chemists, who's structure is not well designed for this.

You can make lots of delicious food with no gluten - eating bread is not in fact required.

Then there are bread substitutes - like cornbread - made from cornflour, and similar.

There are benefits from giving up bread, especially if you're overweight.
It's _way_ too easy to eat.

devildog

This is a difficult one!
I don't think it is right for them to stop prescribing foods for Coeliac Disease but in the same vein those that have Inflammatory Bowel Disease(Crohn's and Colitis) have to take a number of prescriptive drugs daily for life(no choice about it) and they have to pay for all their drugs.
I appreciate that op is talking about food and not drugs though.IBD sufferers have to watch what they eat too though and no provision is made there either(unless they get so bad that parental/enteral nutrition becomes essential which is then prescribed)

wiccanlou

People with coeliacs are subject to developing malnutrition as the small intestine becomes damaged they can't absorb the minerals and vitamins that are normally taken up by the small intestine.

People with Coeliacs have to pay for the prescriptions unless they are already medically exempt, they get 18 units per month to spend on products.

Its all well and good the supermarkets stocking these items but are you aware that a lot of them are stupid enough to stock gluten free bread with normal bread risking cross contamination? same with the frozen foods and other products. Classic one I have seen just last week is the Gluten free cereal being put with the organic cereal just because the box had Organic written on it.

The food in the supermarket is horrendously over-priced and yes I will do all I can to make my own foods for my partner as I know how hard it will be for him to give up the things he loves but it will be very difficult for us as he is on IB and I am on CB ESA which is due to be taken away on the 30th April.

Bigmoney2

wiccanlou wrote: »

I have just found out they are proposing to stop prescribing the foods for those with this Auto Immune disease. If they do this it will more than likely have a ripple effect and the rest of the country will follow.

My partner is just starting the tests and then the diet to see if he has Coeliacs and if it is proven that he does have it we will literally not be able to afford to buy gluten free foods for him. For example a 400g loaf of gluten free bread can cost as much as £2.45 six times more than its 800g normal loaf which makes him very ill.

There is a petition. http://epetitions.direct.gov.uk/petitions/27968

A prescription is currently 7.40, surely its cheaper to buy the bread?
Also most bread is over a pound these days so not really 6x the cost more like 2 times.

purple.sarah

If you know you’ll have to pay for a lot of NHS prescriptions it may be cheaper to buy a prescription prepayment certificate (PPC) – effectively a prescription 'season ticket'. A PPC covers you for all of your own NHS prescriptions...There are two PPC options to choose from:

1. A three month PPC costs £29.10 and will save you money if you need more than four items each month
2. A 12 month PPC costs £104.00 and will save you money if you need more than 14 items in a year.
   
   http://www.nhs.uk/NHSEngland/Healthcosts/Pages/PPC.aspx

So that's an option to reduce the costs of repeat prescriptions. Some people are also entitled to free prescriptions.