hi has anybody had problems getting w/f g/f products free on precription

im disabled and my doctors surgery have got no other coeliacs on their books the nurse didn,t even know the information about the hib injection.I was diagonised just before xmas on the 5th of jan went to docs about g/f prescription, i,ve still got all the syptoms i had before biosopy my gp last week recomended i went g/f w/f but the surgery i,m with want me to accept just g/f products , i,ve also been told that pizza bases and bread rolls are luxury items,i don,t eat biscuits or cakes but do like crackers as they are an easy pocket size snack or treat but been told i can,t have them either luxury again. Can some one explain how they can be classed luxury but you can still get multi purpose flour mix to be able to make cakes,biscuit and savory or fruit pies that seems to be contradicting themselves as every packet as the recipe for cakes,yorkshire puddings(pancakes) and pies all of wish i would say are luxury items surely plain crackers are better than say chocolate cookies or victoria sandwiches.Don,t know if anybody else feels the same but would love to know how many people still fancy a bacon roll every now and again and think its unfair for a gp to tell you a roll for either bacon or soup at lunch time is a luxury because i don,t. How many of you before being diagonised use to have soup and a roll as a starter if you went for a meal and thought WOO what a luxury i,m having tonight from dobi-do

16 Replies

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  • Hi dobido, your gp wants you to go gluten/wheat free, why have you been having trouble with the gluten free foods? If you were only diagnoses in December it may still be early days as far as gut recovery is concerned. To be advised to go gluten/wheat free restricts your diet very much and you should be considered a special case as far as prescriptions go but it is up to you to your gp what is prescribed. You should also consider gluten/wheat derivatives that might affect you such as maltodextrin, wheat-based glucose syrups, dextrose to name but a few. The items you mention are luxury items to a normal coeliac but maybe a necessity for you because of your sensitivity.

    In my practice there is only one other coeliac so it is not as common as is made out.

  • Hi

    Yes I understand only 2 or 3 (only one when i was diagnosed 19 yrs ago) in my doctors quiet large practice. I hav egiven up with prescriptions. At first my surgery/pharmacy did lots of gf but then fund it cost them 50p for each item so made me go 6 miles to nearest Boots. Often it hadnt arrived or was wrong...or mouldy!! After a special drive to get it. Then they woudl only do 1 item per £7.40 or whatever it is (i started with a season ticket but didnt use it enough because they didnt stock things i liked/could eat)

    As i can only tolerate rice products I camt even get it online!

    So i just have rice, potatoes, gram flour, and rice cakes(but they upset me sometiems)

    All I can suggest, is have a good look online to see what you can have, i know some deliver. lots sing praises on mthe fresh bread delivery- someone here will know details.

    Most surgeries do not know much about GF copy some info!! Educate them! Get them on your side!! And GOOD LUCK

    Sue

  • This started in the SE in 2010 when the PCT primary care trust started to restrict gf prescribable items. This was all to do with delivery costs as prescriptions cost the NHS a lot more than food does to supermarkets.

    Other PCT's have now followed suit so it depends on where you live as to what is classed as a luxury food. And fresh bread is more expensive to deliver than the long life vacuum packed bread.

    Then there were horror stories in the press about delivery charges to the NHS and here's a couple of examples:

    dailymail.co.uk/news/articl...

    tntmagazine.com/news/uk/nhs...

    The argument against prescribing some foods is two fold, one being what's now available in supermarkets like Genius bread and gf pasta much cheaper than the final cost to the NHS And as more and more coeliac are being diagnosed the cost of prescription food to the NHS is spiralling at a time when they face severe budget cuts.

  • Hi Dobido

    Just wondered whether you have been referred to a dietitian at all. If not why don't you ask to see one. The Dietitian can be an advocate for you and help by writing the appropriate letter recommending the food you would like from your GP. It seemed in my area that the GP won't do anything prescription wise unless the dietitian had recommended it. Also have you contacted the major manufacturers ie Glutafin and Juvela to register and ask for sample boxes this can be quite useful at the beginning while you are finding your feet with the diet.

    Perhaps you can contact the manufacturers helpline again when you find what you like and they will be able to tell you how much your preferred product would cost the NHS and you can then compare the cost with the products stocked at the pharmacist. I had to do this to get cereal. In fact the cost of the cereal was less than a loaf of fresh bread. So I negotiated a trade off and ended up with something I preferred. Sometimes I have crackers with soup anyway as I prefer them. I know the dietitian didn't view crackers as a luxury item!

  • Juvella does not charge delivery charges now so their fresh bread service should not cost the PCT anymore than the long life. Fresh rolls are made once a week so you have to get your order in by 10.0am on Monday for delivery on Friday. Fresh bread is delivered twice a week, so you put it in by 10 on Monday for Wednesday delivery and by 10 on Wednesday for a Friday delivery.

    If you go to Juvella's website they will explain it or call them and they will speak to the GP or pharmacy for you to explain their service. Also if you are newly dx they will also send you out sample packs of their food for you to try and if you like rolls their fresh fibre rolls are yum!!

  • Sorry to but in here....Juvela isnt the only company who dont charge for delivery...

    some have been doing that for years...

  • Neither does Drossa! Their products are delivered free to pharmacy and the pharmacy I was using at that time made me pay £4 towards the delivery cost of my prescription item. I had a great time with PCT over that one. They sent an officer out to the chemist - goes without saying I changed chemists!

  • Know the Drossa team well.....great company and products.

    Never heard of anyone being asked to pay the carriage....another first...

  • And the last I hope........

    Yes, Sheona is very helpful. Found the various flours, and recipes she sends out, with the right additives makes the best bread and rolls ever tasted...........apart from yours of course LOL xx

    (can only have the Wellfoods bread in my PCT - used to get the rolls before I moved here)

  • Hya unfortunately It depends where you live as this is what is happening in the SE:

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

  • I do find it quite appalling that the prescription charge for (in my opinion) low standard bread on prescription is in excess of £7.00 per loaf but the shops sell ---at a profit---better bread for less than half the price.

    I personally do not think bread is a luxury, and toasting a roll then putting pizza type topping on and in the oven for a time makes a passible pizza, however I do think biscuits and cakes are a luxury

    My reason for these opinions are; when I look at my shopping list for things NOT to buy to save cash, biscuits and cakes are the things my family do without

  • Asda do good gf flour, I make cakes, scones, biscuits, pies...pizza bases at a fraction of the cost of a script......so it isn't a hardship being coeliac.....you just have to plan a bit more and make sure you have the stuff in to bake with.....

    Janie

  • hi thanks janie problem i have is making sure it is g/f and w/f i can,t even toralate the codex level they say is safe. I beilive most coelics can have barley malt extract but that makes me feel unwell also.I,m having lots of plain fish,meat and veg luckily the glutifin pasta is g/f w/f so can have plenty of pasta dishes as long as i make it low fat from dobi-do

  • I can't have maltodextrin, dextrose......so I spend most of my time in the supermarket readin labels...I am like you...I only eat food that is naturally gluten/wheat free..but sometimes I just have to have a piece of cake so I make one.....I maybe have gf bread once a week, cos I tend to bloat with it....the genius bread seems to be the only one I can cope with...

    I just wish that they would label stuff better.....cos I've been got a few times lately.....

    Janie

  • It's all very well saying you can get bread in supermarkets etc but tesco's near me had nonfat all on Thursday and over Christmas I had a real trail round places to find bread and had to settle for some old, almost out of date bread when I eventually found some.

  • Hi janie i have found asda to be the best one for giving information they tend to put it in the allergin box,ie my partner enjoys dandelion and burdock i use to have little if travelling and nothing else was to hand but when we were label checking we found that it wasn,t suitable for me yet the tropical fizzy juice was fine and it was so easy just looking in the allergin box, i realize there are still hidden ingredients that are not in the allergin box but asda are trying hard to make it easier for people with allergies its just a pain cause there are not so many asda stores around as tesco, i know i have to travel 30 minutes to asda and only two minute walk to tesco. I,m still not 100% sure of all the ingredients i,m suppose to avoid having only been diagnoised a week before xmas but i,m learning. Hopefully when i see my dietician in may i will learn abit more.Since finding this page i,ve picked up little bits of information i didn,t know and hopefully i,ll keep getting useful tips, and maybe ask the question if i,m not sure of something and i feel sure somebody out there will have an answer

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