Prescription Gluten Free Food... - Gluten Free Guerr...

Gluten Free Guerrillas

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Prescription Gluten Free Food...

FionaGFG profile image
FionaGFGAdministrator
7 Replies

Curious. Many GFGs have mentioned our Facebook page that they've had trouble getting their normal allowance of Gluten Free Food on prescription.

How many of you have noticed that with recent budget cuts it's impacted on your prescription food allowance?

What are your favourite gluten free breads, pastas and flours on prescription? Have any of you taken part in the Cumbria trial where the pharmacist sorts the prescription for you? Did you know if you are pregnant or breast feeding that you are allowed greater unit allowances?

Or are you totally confused about Gluten Free Prescriptions? Or have you avoided them as you felt silly 'bothering your GP' or making a GF food list for him? Have you survived by avoiding all breads and 'Free From' items and focused on eating naturally GF foods?

More info on UK prescription food guidelines here:

coeliac.org.uk/gluten-free-...

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FionaGFG
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7 Replies

I should have regsitered as Mr Controversial, so I'm sorry if my views are controversial to some. I do not get food on script and I do not think that it is in the best interests of coeliac anymore for a few reasons. Firstly if coeliac did not get food on script then there would be opennings in the market place for our needs and we could see bakeries cafe's like the 'Silly Yaks' cafe bakery in Melbourne springing up all over the country. Also if a coeliac likes a certain type of prescription food if they do not provide it family and friends have to buy from the free from shelves so they can not get what the coeliac really wants. So its like a closed shop. Where as the free from shelves are full of foods that any one can buy. And made by many food manufacturers where as prescription foods are predominantly made by one big food manufacturer with several brands. Most importantly codex wheat starch is very processed it is inert and has no nutritional value it might be fortified with calcium but this is only chalk which the body does not absorb readilly. So basically it tastes of wheat and that is its main advantage and it contains a small amount of gluten which is the price coeliac pay for having that taste.

Again I am not saying it should not be eaten by coeliac I just feel that coeliac should be aware of what they are really eating.

I make my own bread and cakes and for bread I use rice flour tapioca starch and quinoa flour (quinoa contains all the vital amino acids that our bodies need) For cakes and biscuits I use a mix of rice flour with tapioca starch. I pay £2.50 for 1.5Kg of rice flour and 99p for 500g of tapioca starch so neither break the bank.

Lastly look at the pallava of going to the docs with a repeat prescription then going to the chemist then waiting for the script and look what a nuisance it is when the wrong food is deleivered. So I know where I prefer to buy my food, the shops with everyone else.

Food for thought.

FionaGFG profile image
FionaGFGAdministrator

Hi Jerry. Interesting post. In fact it took me a whole year and much pestering from friends before I eventually got a prescription myself. I've been thinking of doing a blog on prescription food etc. Would you be happy for me to post yours up with a credit to you to get discussions going?

I think the comments are sometimes hard for people to see and easily missed. A blog of it may inspire more comments.

After 3.5 years of having prescription foods I have found that my continued health issues are the result of eating Gluten with foods classed as "Gluten Free" having up to 200ppm per kilo of gluten. "Gluten Free" is a very misleading statement to make. If anything comes from a gluten source and can only be tested up to a level of 10ppm then it should be labelled as from a "Gluten source". For those that are pro gluten the question is if it is that safe why is it being reduced by 100% from 200ppm to 20ppm?

I am more than happy for you to use my post to start a blog on prescription foods. I think that too many people are afraid of change and with more and more coeliac being diagnosed it is going to be impossible for the NHS to provide for us especially in the present economic climate. I eat mostly a wholefood gf diet so I am a self confessed foodie and I look at what I can eat.

I Believe that as some foods can make us ill there are some that can also make us better so I believe that there are super foods for coeliac.

Hi Tony, to me this is obvious because I fail to see how 200ppm is safe and 201ppm is toxic. I also agree that we should be aware of where a food is derived like E152 caramel is derived from wheat, citric acid can be and we the consumer have a right to know the source.

BTW sorry to be pinickity Tony, reducing the 'allowed' level of gluten from 200ppm to 20ppm is a reduction of 90% this is a big step in the right direction and I think it was to bring codex into line with the US who have had 20ppm for years voluntarilly and legislation was passed in Congress to make gf 20ppm by law early in 2008.

Being an idealist I would like to see the definition of gf to mean made with none of the forbidden grains and with undetectable gluten when tested.(zero ppm would be perfect)

I also agree that wheat deriv's which do not have to be labelled as such should be.

gfco.org/index.php I would like to see gluten free certification for eateries across the Eu after Jan 2011 their definition of gf is none of the forbidden grains and below 10ppm which's 95% less than 200ppm which is allowed at present in the UK.

The reason the allowed level keeps dropping is gluten is toxic to all coeliac.

beckyf profile image
beckyf

I find getting food on prescription to be a bit of a nightmare - it always seems to go wrong somewhere, either with the GP, pharmacy or supplier, and takes well over a week to actually get the food. I don't always get what I am expecting - and sometimes it's a quantity error, so I might be expecting 1 loaf of bread/packet of pasta and get 8 or 9 loaves/packets. Or vice versa. Now I type out exactly what is required (with PIP codes), with polite instructions about what the GP and the pharmacist should each do, and my phone number so they can phone me if there is a problem. I also ask the pharmacy to phone me when the food is ready to be collected. I print this document out twice, and give one copy to the GP, and the other to the pharmacy. In spite of this, it still goes wrong, I cannot believe this is the most efficient way of helping us - but persevere because it does actually save me quite a bit of money :-(

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