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

[CoeliacQuestions]

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 .

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 .

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

Thanks all.
First of all I've been an idiot, it isn't 'match' 2 that the biopsies showed but marsh 2, don't know why I wrote completely the wrong word. I thought I should clear that up because I think that's a reason that the consultant is able to diagnose through exclusion. This link explains the biopsy test and what each 'marsh' means. If you have marsh 3 or 4 it's a definite diagnosis. Marsh 2 is harder because there could be other causes however we've ruled out pretty much every other cause and with my symptoms pointing to coeliac the consultant would be willing to diagnose.

Thanks for the advise on corn thins schilke, I'll definitely look out for them. I hope ot didn't sound like I was being rude about the bread, I'm amazed that the companies that sell this stuff can get away with charging that much really. It's wrong.

Thanks so much schrodinger for the advice on contacting the websites, will definitely do that. Will also look out for the quorn stuff!

Thanks Rooibos for the great advice too. Really good ideas about cornflour and tinned tomatos.

MrsLeighHalfpenny , I'm vegetarian so don't eat meat. What's get?

IAmNot, sorry to hear your ds has severe allergies. I think you're right about it being a postcode lottery. My friend put me in touch with two people yesterday who she knows who are coeliac and funnily enough one of them had a marsh 2 biopsy like me and was diagnosed through exclusion after those results. These two people live in a different county to me and they have bread, cornflakes,spaghetti, lasagne sheets, tagliatelle (that's a bit too much pasta for my liking), flour, and a few other bits I can't remember.

I think if which foods are precribable is going to be looked at then the companies who make the gf food need to be given a kick up their backsides (unless it actually costs that much more to make it? I've no idea).

Flora, from what the consultant said I think the reason they're able to diagnose after an exclusion diet is because

Oops it would help if I posted the link I mentioned

www.coeliac.org.uk/coeliac-disease/getting-diagnosed/gut-biopsy/

This explains the 'marsh' classification I referred to.

schrodinger so sorry to hear you've been affected so much by it and I can't imagine how difficult it must be to have coeliac children with school, parties etc. Gf seems to be 'in fashion' at the moment so I get the feeling that some people don't understand coeliac and think it's being 'faddy' so I bet that it's difficult explaining to people how ill your children will be if they eat gluten or something contaminated with it.

I live in Wales and I think it's different here from England in that all prescriptions are free here, no matter what they're for.

As you say though there are many inequalities. Some of the things they'll prescribe are ridiculous. For eg when dd was little she had very sensitive skin and the doctor offered to put oilatum bath stuff on repeat prescription for me! I declined, can get the stuff for pennies in home bargains. A friend of mine gets calpol on prescription! And another head lice treatment! I think if anything can be purchased reasonably elsewhere then it shouldn't be prescribed. You can get calpol (or a similar no brand children's paracetamol) so cheaply. If you were a doctor why on earth would you wrote someone a prescription for that?!

However because coeliac is a serious disease and earing gf food is the only way to not become seriously ill then it should be prescribed, especially given the high costs involved in purchasing it otherwise. I'm a bit surprised that it isn't more easily prescribed and that some people think that it shouldn't be tbh!

schrodinger you cannot get gf food on prescriptions for bonafide allergies. You can only get gf foods on prescription for coeliac disease which is an intolerance, not an allergy.
My son does have a bonafide allergy - hence he carries a prescribed epipen and has regular appointments with the consultant at the hospital. A small piece of normal bread could kill my son quite quickly.
I have been buying gf free foods for my son for over 7 years now and I am used to it but I do think the prescription situation needs looking at. Gf foods are now quite widely available and I don't see how the NHS can justify giving prescriptions to one life threatening gluten condition (coeliac) but not another (severe allergy). I also don't think that we need to be providing food on prescription at a time when the NHS is making cutbacks in things that cannot be purchased over the counter.

Sm to clarify, I wasn't necessarily justifying the position regarding the withdrawal of prescription gf food, merely pointing out the situation.

That said, bread aside - and we do get bread prescribed, although we don't eat much of it - it is perfectly possible to feed a family with one or more coeliac members a normal diet without spending a fortune on specialist food. Meat, eggs, cheese, milk, fish, bread, all fruit, all veg, rice, quinoa, millet, buckwheat, potatoes, oils, nuts, seeds, ... all naturally gf. There aren't natural alternatives available for everyone with a lifelong condition - and I really don't see why, now that the situation has changed regarding availability, why coeliac disease should be treated differently from other serious allergies in terms of food provision.

Also, schools are obliged to cater for children with coeliac disease. My son has a gf option available to him every day - he is in Y6, and we have already spoken to the secondary school he will attend, which is also able to accommodate his dietary needs.

Iamnot - actually, coeliac disease is not an 'intolerance'. It's an autoimmune condition.

It's the general lack of understanding of what gluten (and indeed, 'coeliac disease' - see previous post) is, and the danger of cross-contamination - and educating food providers about the risks of it - that comprise the hardest part of raising a coeliac child, in my experience. Not feeding him myself.

CoeliacQuestions No I didn't think you were being rude. When I looked back at my post I realised saying 2 loaves of bread for £6 wasn't too bad sounded daft. I'd forgotten to explain why it wasn't as bad as it had been.

Ds2 is now 15 and has been gf since he was 5 - with one lapse at the age of 8 to be tested for coeliac disease. I suppose I've got used to the prices. The only gf specific foods we buy are bread, porridge oats, pasta and pitta breads. We all eat rice cakes and corn thins...sorry can't stop talking about them!

The big problem for us is if we want to eat out - not that we do that often. Being gf and vegetarian makes it pretty hard to eat in a restaurant. We tend to go to Pizza Express. Dh loves the fact that the gf lager is the same price as the normal lager.

Dh & ds2 are often accused of being faddy as they don't have a diagnosis of coeliac disease. Ds2 usually says to a fad accuser well if you want me to eat gluten I'll need sole use of your bathroom for the next 6 hours

Apologies multivac and thank you for correcting me. I don't know as much about coeliac as I do about allergies (for obvious reasons) but I am always happy to be educated in the subject.
My opinion about the disparity in prescriptions for the two life threatening conditions still stands though.
As a mother to a child with a severe allergy (several severe allergies) I do understand and about the misunderstanding around cross contamination risks and educating others about separate food prep areas etc.

sorry, didn't read the thread properly earlier, and would like to pick up on this, from rooibos "Some people are ok with normal porridge oats".

If it is coeliac disease, you must avoid 'normal porridge oats', due to the high risk of cross contamination. Some people with coeliac disease are ok with gluten free oats. Others react to a protein in them that is similar to gluten.

And sorry, actual advice! Keep it simple and unprocessed, and you will find you can eat gf without major expense or trouble. Swap pasta for rice, and cut down on bread generally. Invest in some good, gf flour and you can easily bake cakes etc (although biscuits are tricky) if those are a normal part of your diet. Use it to thicken sauces, too. And for a treat, by far the best ready made supermarket gf pizza we've found is from Tesco. The Sainsbury's one is disappointingly small, and Asda's, too crunchy :-)

My opinion about the disparity in prescriptions for the two life threatening conditions still stands though

Yes, I agree. It's an anomaly, that's illogical and unfair.

shilke
We discovered Wagamama recently (I know, I know - we're not familiar with many of the chains!) Brilliant for a group including both coeliac and veggie diners. Pretty much all the High Street 'Italian' restaurants are fine now, too, from PizzaHut to Carluccio's.

I'll have a look at Wagamama. A change would be lovely. Dh and I have a few nights away soon (first time in 17 years) and we're looking forward to trying out a couple of places in Lyme Regis which are veggie and gf...I'm ridiculously excited!

I hope you have a fabulous time, schilke

I just wanted to quickly update in case it helps anyone else in this situation, the surgery phoned me. My lovely consultant met with the dietician and together they telephoned the surgery to advise them on my prescription. So, for the month, I'm allowed 14 'units' (each food on the list of prescribed items is measured in units). So for my 14 units, 8 of these must be from bread and the remaining can be whatever I like. So I chose plain flour (for bread, pizza etc), white flour for cakes etc, some cornflakes and some crackers. Came in at 13 units and I'm very happy with that.

I have to pop out now so will read the other posts later.

Thanks again all, I've learnt some great tips about eating gf .

Oh I will quickly say in case I forget later, schilke, one of the coeliacs I spoke to last night told me that her blood test was negative but she was still sent for biopsies because of her symptoms and she was most definitely coeliac, the surgeon could tell even before he'd taken the biopsies by the state of her gut and after reading up on it a bit it seems that there are often false negative blood tests so if your dh (and your ds when he's older) want a diagnosis (they might not be bothered) then it might be worth going down the endoscopy route.

Thanks CoeliacQuestions. They were quite dismissive 7 years ago, but I have heard since that you can have negative blood tests but still be coeliac. I don't think either of them want to go back on gluten even just for 6 weeks.

We sometimes lie and say that dh & ds2 do have coeliac disease just to stop all the "Oh are you following a gf diet like Novak Djokovic?"

Good luck with your new diet!

Schilke we too are all veggie and coeliac, school dinners are available gf but not gf veggie here
I too carry epipens for the multiple anaphylactic allergies I have as a direct result of this condition which is one of many auto immune conditions I have
The original poster was asking for suggestions not a debate on whether we personally think prescriptions are fair, that said in my region people have been given a prescription for allergy
Op Im really pleased youve got your prescription, try all the makes, if you can get to the allergy show in Liverpool 7/8th Nov you will find many fab companies and coeliac uk and ask your pharmacist which brands are most popular as they tend to be the nicest
On the whole you will find the coeliac community wonderfully supportive, over on twitter people post new products theyve found to let others know

Oops sorry I took so long to come back. schrodinger thanks so much for telling me about the allergy show, I've booked tickets so looking forward to that. Thanks for all ypur great advice