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Does anyone know if a GP can write a prescription for gf food if asked to do so by a gastroenterologist?

(45 Posts)
CoeliacQuestions Thu 15-Oct-15 14:14:31

Hi, I'm wondering whether anyone would know the answer to this? After suffering with stomach pains, wind, bloating and low iron for around 18 months I had an endoscopy and the results of the biopsies indicate that I might have coeliac disease (for anyone 'in the know' my biopsies were match 2 so not definitely coeliac but my gastro consultant said that with my other symptoms it is looking likely). Anyway, he said that he would like me go on a gluten free diet for 4 months to see how I feel after cutting it out and he said that he would write to my GP surgery and ask them to provide me with a prescription for gf food. He said that the prescription would take a couple of days. This was on Friday 2nd October.

So on the Tuesday I contacted the surgery but they didn't have anything and I have been contacting them every couple of days since and they still have nothing. In the meantime I've been buying my own gf food but it is soooo expensive and we shop on a budget and I don't know how much longer I can keep buying it. I don't really want to go back not eating non gf as I've felt such a difference in myself already and I don't want to undo all the good work the gf diet seems to doing.

So, anyway (thank you if you're still reading, realise this is a bit of an essay) today I contacted the surgery again and they advised me that the consultant had been too vague in her letter so they're unable to prescribe me any food and what the consultant should have don't is list exactly what food I'm to have on my prescription, otherwise they don't know what to give me so can't give me anything confused.

so I phoned my consultant's secretary and my consultant is away until next week. But the secretary said that in the ten yrs she has worked in this job she's never known a consultant to have to write out a list of specific foods and usually what happens is that the surgery would make me an appointment with a gp to discuss my foods preference and that I can choose food from a list and then they prescribe it, simple as that! She said the surgery are being purposefully obstructive because they don't want to pay out for my prescription!!

So now I'm stuck between two places, surgery saying there's nothing they can do and consultant saying the same. Anyone have any ideas where I stand? How did you get your prescriptions? I think the difficulty could be in that I haven't actually been diagnosed as definitely coeliac, maybe if my biopsies that shown that I was definitely coeliac the gp could prescribe? I wonder how common it is for the results to be indictive of coeliac but not a 100% diagnosis?

Any advice anyone can give would be very, very much appreciated.

Thanks for reading flowers.

(By the way I've name changed, hope that's okay. I usually do when I talk about health issues)

CoeliacQuestions Thu 15-Oct-15 14:17:56

Also, I should say when the surgery said that the consultant's letter was too vague what they meant was that all she said was "could you please prescribe this patient some gf food as we think she may be coeliac etc etc" but that she didn't specify which foods in particular but the secretary said that they normally don't do that. Sorry, hope that makes sense.

Pico2 Thu 15-Oct-15 14:21:54

Why don't you make a GP appointment to tell them what you'd like.

In the mean time, there is plenty of choice of GF food that naturally occurs. My DM is GF and rarely eats GF substitutes. So she has rice, potatoes, rice crackers etc.

CoeliacQuestions Thu 15-Oct-15 16:07:27

Thanks for replying Pico2, I've made an appointment for Tuesday (first I could get) but not sure what to expect if the surgery have said they won't prescribe anything. I'm hoping I can find out what others have done regarding prescriptions.

Thanks, I've been trying to eat naturally gluten free food too. I'm a bit restricted because I'm also vegetarian and I follow a fodmap diet for ibs! Had rice last night with a homemade casserole and going to go for omelette tonight. But it'd be nice to have some bread/porridge/crackers/flour etc. It's so expensive in the shops.

schilke Thu 15-Oct-15 16:13:02

Sorry no idea. I have 2 gf people in my house - dh & ds2. Ds2 tested negative for coeliac disease but he cannot eat gluten otherwise he ends up with diarrhoea. Dh is the same although never been tested. We're also vegetarian.
I make cakes, biscuits etc. from scratch so don't spend a fortune on shop bought ones. They have a lot of rice cakes, corn thins and they're not too expensive. Probably get a couple of loaves a week which is about £6 so not too bad.

tribpot Thu 15-Oct-15 16:22:02

I would imagine the surgery are told not to prescribe gf food without a firm diagnosis of coeliacs, so you're in this grey area (and unfortunately I don't think you will test positive in future if you've been avoiding gluten).

It's worth talking it over with the GP as at least they can explain the basis of their prescribing decisions, but I suspect like many you're going to have to fund it yourself. As mentioned above, the best option is to go for rice, potatoes rather than the expensive gf equivalents to pasta and bread. It takes a while but you get used to making different food choices.

The good news is that you're feeling better - I definitely wouldn't go back to gluten if avoiding it is helping you. I would have thought it would be beneficial for the IBS too?

Floralnomad Thu 15-Oct-15 16:28:14

I would be surprised if a GP would prescribe ,or was even allowed to ,without a definite diagnosis and in all honesty what you are allowed to have on prescription is a bit of a postcode lottery anyhow .

SauvignonPlonker Thu 15-Oct-15 16:54:32

Without a definitive diagnosis ie positive jejunal biopsy (which is the gold standard) rather than blood tests, GP's are very unlikely to prescribe.

In your shoes OP, I'd make an appointment with your GP to discuss this.

Do you have a follow up Gastroenterologist appt? Have you been referred to a dietitian? If you are following a strict GF diet then any future biopsy results will reflect this & coeliac disease cannot be confirmed.

CoeliacQuestions Thu 15-Oct-15 17:33:20

Thanks all. I have had the biopsies and there was damage to the lining of the gut but it was match 2 (consultant said it can be between 0-4, 4 means definitely coeliac, 2 can either be coeliac or damage caused by something else). But he will diagnose me as coeliac of the elimination diet proves succesful so I guess then I'll have the prescription food and until then I'll have to fund it myself.

Thanks for your advice. Looks like I'll be eating rice/potatoes/omlette every day for the time being!

Madelinehatter Thu 15-Oct-15 19:48:47

Well my GP is clueless about prescribing. I downloaded a form from Coeliacs society and took it in for him. He used that as a guide. Try that maybe. Good luck!

TwistedReach Thu 15-Oct-15 19:53:37

my son was diognosed with coeliac 17 years ago (turned out not to be the case) but he was gf for 5 years. At that time, we got a choice of things prescribed by gp including, bread, pasta and biscuits from what I remember. Of course I don't know if its still the same or true everywhere. Have you tried the coeliac uk website?

CoeliacQuestions Thu 15-Oct-15 19:55:35

Thanks Madeline and twisted, there is a list of prescribed foods on the coeliac website think I'll print it off and take it in on Tuesday.

Madelinehatter Thu 15-Oct-15 19:59:16

I just get the Juvela bread. Can't get anything else tbh. No pizza bases or biscuits these days. You can get crackers but they aren't nice! I just get bread and stock the freezer up once in a while. I don't milk it.

MrsLeighHalfpenny Thu 15-Oct-15 20:01:51

You don't need to buy GF food to eat GF. Just don't cook stuff like pasta.

CoeliacQuestions Thu 15-Oct-15 20:03:22

Also, just something I wanted to add that I forgot to say earlier. schilke mentioned that it's £6 for a couple of loaves of bread which 'isn't too bad'. I reckon that's extortionate, I was buying a loaf of bread for 49p from aldi. The other thing with gluten free food is that it's often out of stock or the use by date is something ridiculous like the next day. I think it's really awful that coeliacs are expected to pay for something that essentially stops them from being seriously ill. I know they haventy confirmed me as coeliac yet but they are 99% sure and they have told me to go on this exlusion diet so that they can diagnose me so I really feel that they've let me down in not preparing my prescription, especially as.my consultant said this was what they were going to do.

Sorry for the rant, just feel massive disappointment and am annoyed at having to chase them for the last two weeks only to be told no.

CoeliacQuestions Thu 15-Oct-15 20:07:08

Thanks madeline, I had a look and was going to ask for the bread, the porridge and two types of flour (plain for pizza bases etc and white for cakes). I'm not going to milk it but those 4 items will save me a fortune.

CoeliacQuestions Thu 15-Oct-15 20:08:46

MrsLeighHalfpenny, it's in loads of things besides pasta though.

Floralnomad Thu 15-Oct-15 20:15:34

In our area you can only get the long life bread on px ,not the fresh and my dd is very fussy . Sainsbury usually have a good selection of GF as do Tesco, I've always found that the BBE dates are longer on GF stuff - for example I bought some GF jam tarts and angel slices and the best before was 2 /3 weeks away so perhaps you need to just shop around a bit . I'm amazed that the gastro person has said he will diagnose by exclusion , I would have thought it would make more sense to load with gluten and then do the biopsy again to see if it's definite - obviously things have changed in the years since we had our diagnosis .

schilke Thu 15-Oct-15 21:20:58

When I said wasn't too bad, well, of course it is. I suppose I was thinking that it used to be more but they have had to cut down drastically on bread partly because of the price and also because it's not exactly nice. So they have a loaf each a week. It used to be more, but they'd rather eat rice cakes and corn thins....honestly corn thins are delicious. We've just had to get on with it as there is no diagnosis for them, but obviously they can't eat gluten so we've had to suck it up. Ds2 had a blood test years ago which was negative so that was that.

Their favourite treat is pitta bread pizza - £2 for 4 pitta breads ( yes expensive, but probably not too far off the price of buying a normal ready made pizza). Some Quorn items are gf. We have a lot of big veggie stews.

I can't think you'd get enough stuff on prescription to never have to buy any. In my area my gf friend gets a bit of juvela bread and that's it. She doesn't bother because she hates it!

Schrodingersmum Thu 15-Oct-15 22:56:13

You can have a prescription from symptoms only if your consultant or dietician writes to advise your gp as both my children were diagnosed after being gf for 4 years
To get yourself some free food contact glutafin, juvela, ds on their websites and they will send hampers out for you to try
If you are on a tight budget try asda, their bread is reasonable and cheap and very often reduced to less than £1 and freezes well
For the quorn lovers out there, sausages and burgers are filtering through slowly gf, we have been getting them since August from Waitrose and the donuts at Tesco's have made both my kids very very happy

RooibosTeaAgain Thu 15-Oct-15 23:06:28

Agree, log onto major gf websites - I got a big free box of juvela and glutafin from them. And nice to try different products!
Quorn pieces, mince and fillets are gf ( from memory). Spices and herbs and tinned tomatoes good for sauces. I use cornflour in sauces which is cheap. I used to make my own gf bread - doves bread flour makes 2 loves. Coeliac uk website, juvela and glutafin websites also, have lots of recipes which I found helpful.
Some people are ok with normal porridge oats. That is helpful - only some people react to oats ( oats themselves are not gluten).

Hope GP helpful and you get lots of useful products from the major gf retailers to try for free.

MrsLeighHalfpenny Thu 15-Oct-15 23:29:46

Well yes, obvs CoeliacQ . But I'm suggesting you don't buy them. Buy food such as meat and get, which IS gf.

Schrodingersmum Fri 16-Oct-15 07:44:43

Just to add, current diatetic advice is to avoid all oats for the first year on a coeliac diet and only then use gf oats due to risk of cross contamination

Iamnotloobrushphobic Fri 16-Oct-15 07:54:26

I thought you couldn't get gf food on prescription without a definite diagnosis of coeliac disease.
My DS has severe allergy to wheat and dairy and needs to carry an epipen as even a small amount of wheat could kill him but we are not entitled to prescription gf food.
We keep the costs down by using as much natural gf free foods as possible (fruit, veg, meat). But we do buy some bread for packed lunches and we buy gf pasta, flour, baking powder and sausages. It is expensive but I think it is about time the provision of food on prescription was looked at as gf foods are much more readily available than they were when they were first given on prescription. Prescribing of gf foods is also a postcode lottery as different areas offer different things on prescription (some o lay offer bread , flour and pasta whereas others offer pizza bases, biscuits and cakes).

multivac Fri 16-Oct-15 08:04:41

GP practices are cutting right back on gf food on prescription; in fairness, when it was first introduced gf staples were very hard to find, and eye-wateringly expensive. Now, although they are still pricey, they are widely available, leading to a clear discrepency between how those with coeliac disease are treated as opposed to someone with, say, a dairy allergy. And of course, in today's climate, the obvious response is to treat the former more like the latter, rather than the reverse.

All our surgery now allows is bread (we used to get bread, pasta, pizza bases and cereal, which is a major expense), and they certainly wouldn't prescribe it without a formal diagnosis.

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