Requesting prescription for gluten free products but only severely intolerant

[ProtectingMyNormalNickname]

We see the paediatrician tomorrow with DS who is severely intolerant to gluten. Originally this presented as anaemia, severe lack of energy, mouth ulcers, aching joints, black circles round his eyes, sickness, horrid diahorrea for months, tummy aches, failing to gain weight etc.. His blood tests have twice come back negative for Coeliac disease (and CMP allergy, although he is intolerant to this too, and soya) In the end we followed the advice of the paediatrician and had an endoscopy and colonoscopy done to check for Coeliac Disease, ulcerative colitis and Crohns etc.. as he was sure that DS actually did have Coeliac disease, despite the negative bloods (and by then we'd also spotted blood in his stools, hence the colonoscopy) . He had been back on gluten for 16 hellish weeks by the time they finally got him in and, as I expected, the results came back negative.

We took DS straight back off the gluten and he quickly improved. Six months later, he is lively, energetic, active, gaining weight, growing (which had also slowed right down), and has much less of all the other symptoms. I was told by the paediatrician at Birmingham Children's Hospital that we can ask the paediatrician locally to put gluten free products on prescription, even without the diagnosis of Coeliac disease, due to the severity of the symptoms but that it is at his discretion. I don't particularly like the local paediatrician - he's not someone who wants to work in partnership wih parents, and I think he finds my logical questions unsetling. I was just wondering really whether any of you have any experience of successfully asking or any tips on how I might persuade him.

While I'm on here, do your DC's schools provide a gluten free lunch if requested? Our county caterers are telling me that they will cook it if I provide the pasta but that I will still have to pay the same price as the other parents for them to cook it. I don't think this is a reasonable adjustment under the Equality Act 2010 (that I use for work, I'm not just that sad!) and would again like to hear your experiences please before I make a formal complaint to the LA!

Sorry this ended up being long and TIA.

I had to provide the pasta and bread up until DS1 had a firm diagnosis of coeliac (which took until he was 9yo, despite it being apparent from a baby). Now though, post dx, they provide everything for the same price. They just won't do it without an active dx here.

Thanks. Here it doesn't seem to be the fact that he doesn't have a diagnosis (because his diet is restricted under the guidance of the dietician and paediatrician), rather that they get parents of DC who have Coeliac to provide it because it doesn't cost them anything so everyone gains. Apparently, they have never been asked before to provide it for someone who doesn't have Coeliac disease and say that the cost is prohibitive.

Could anyone else advise me please?

DD2 is wheat and dairy intolerant. She is 14, and her school does try to ensure there is something she can eat every day, even if it is simply a baked potato with beans. AFAIK they're not under any obligation to do so, we're just lucky that the headmaster is brilliant.

Having said that, she mostly takes lunch in, it's simply easier and I know she's getting a nutritious meal that she can eat.

Well I don't know if this helps but my DD is severely intolerant to dairy, soya, oats and barley and I have been told that the company that caters for her school dinners (she starts full time in sept) are able to cater for her but I guess she is easier as she can have gluten.

Have you actually spoken to the people that cook the meals?? Rather than the LEA iyswim.

I feel your pain DD was suspected of having coeliacs at one point as she seemed to react to certain things like bread but has always been ok with pasta ( even including dairy and soya free bread). Luckily she seem to have out grown that now although it took over a year of being totally bread free for that to happen.

I don't know about school dinners but I do know that in our area gluten-free products are only prescribed with a diagnosis of coeliac disease, they are not allowed for intolerance.

The paediatrician is right, getting gluten-free products on prescription without a diagnosis of coeliac disease is up to the discretion of your own consultant or dietician who will then have to write to your GP requesting that they provide the relevant prescriptions (it comes out of your GP's budget). We are very lucky in that my DS is allergic to milk, wheat, eggs and nuts but not coeliac (unlike my DD) so does not qualify for any food on prescription yet our dietician instructed our GP to provide 1 loaf of freefrom bread, 1 box of wheat free pasta and 1 box of digestives per month. Obviously that's nowhere near enough for a month (DD gets 4 loaves of bread, 4 packs of rolls, 1 box of pasta & 2 pizza bases as she's coeliac) but it is technically still more than we're entitled to. However, the situation is getting worse as some local health boards are even starting to cut down on prescription foods for coeliacs and there are fears that eventually there will be no food on prescription at all.

As for school dinners, I sat down with the dietician and catering staff and there were a number of meals on the menu that they were able to adapt slightly for my DD but if I wanted her to have pasta, pizza etc I had to provide the gluten free versions and pay the normal price. Given that she gets these free on prescription, I was fine with that but if I had to pay for them and then pay the normal price I would not have bothered. I do supply the canteen with wheat free gravy granules so that both my DC can have school dinners on a Wednesday when it's roast dinner.

Thanks all for your responses. Freefrommum that is the same situation that I'm in here (except that I would have to pay for it), and yet on the website it says they provide 'wheat free' meals everyday. Simpson I have spoken to the cook at school but she doesn't control the finance behind it, or the ordering, as far as I can tell, hence my discussions with the LA.

The paediatrician said he would write to the GP about a gluten-free foods prescription but that he didn't think they had to agree, as it does come out of the GP's budget. The GP has already said he would give it his best shot if we could get the paediatrician on board so we'll have to wait and see.

The main problem from today's appointment is that the paediatrician wants us to try and reintroduce dairy into DS's diet. The timing for this is tricky as he starts school in September and I've already booked a load of events during the holidays that I don't want to risk mucking up with a vomity and poorly child. I totally understand that in the long run we need to keep trying it to see if we can normalise his diet, but a)he's only been well for 6 months (in the last 2 years!) and b)I'm rather enjoying a bit of normal life!! If he has grown out of it, it would be great, but at the moment he is gaining weight, is healthy and energetic and I don't want to make him sick again. Do any of you know how long the trial would need to last? The paediatrician wasn't sure so we have to wait three weeks until the next appointment with the dietician.

Hello OP

My DD is anaphylactic allergic to wheat but isn't celiac, or at least that's what we've been told. She had her first reaction to wheat at 6.5 months and is now 4.5, so I've been buying very expensive GF bread for her to eat all that time. Last year, I asked the GP about this as I had heard of another wheat allergic child being prescribed GF foods. The GP wrote to DD's allergy consultant who said that this wasn't necessary as DD is not celiac. It is all very confusing and expensive and inconvenient. DD has multiple allergies so we have to avoid things like eggs and soya. The only brand I've found that is ok for her is Ener-G Gluten Free Loaf and I have to get that directly from the supplier as I can't get it in our local supermarkets.

DD was also not having dairy until recently. She was never allergic to this but was intolerant. We had tried this every since she was 8 months but never really tolerated it. We used to do this by swapping an ounce of milk per day for her hypoallergenic formula. We only ever got to 3 oz before she started to get mucousy poop. This year we tried again but I first started by giving her kinnertine nut safe chocolate. A little every day. After about 6 months of this I started adding half an ounce of milk into her formula for about 5-6 days and then increased this by half an ounce every 5-6 days. It took a while but she seems to be tolerating dairy well now and this has been a massive change to her diet and my sanity as there are so many things she can now eat like mild cheese and yogurts.

I'm not sure if this helps but I hope you have a sympathetic GP who is willing to prescribe GF foods for you.

Thanks Mumat39. Once we've seen the dietician, maybe we will consider try the dairy really slowly then. I think I am slightly put off by the fact that we tried it with DS2 (who is 2) in January and after 8 days of him having a little petit filous pot each day, he vomited for three weeks and nearly ended up in hospital!! It's good to hear that your DD has managed to get back on it as it is obviously what we would like to achieve in the long run. My friend pointed out today that as we had to do 16 weeks of gluten before Christmas, which made him really ill, that his body might still need more time to sort itself out first - possibly 9 months from the last assault.

The bread situation for you sounds mad. I reckon that in Sepember we'll be spending £9 a week on his bread alone! At least he's developed a good appetite for the first time in years!

I was finally officially diagnosed as non coeliac gluten intolerant a few months ago. I am 48 but it took me 20 years of ill health to get there and like you with your DS did it by excluding experimentally gluten and lactose and with the help of a very knowledgable and supportive consultant. The positive effect on my health was dramatic as with your DS and accidental exposure brings all my symptoms roaring back. Most doctors are extremely dismissive or have never heard of this condition as it does not fit nicely in their 'typical coeliac' box. The health effects can be extremely severe though and just as bad as for people with classic coeliac.

You will likely not get a prescription IME and I heard that prescrptions for coeliac food is being withdrawn anyway because of its high cost. I strongly advise you buy a bread maker and cook your own gluten free bread and also start to cook gluten free biscuits and cakes. Can DS take packed lunch to school?

There are lots of great gluten free cookbooks now - many of them in libraries.

Do also be careful with milk. I buy lactofree milk and yoghurt at Sainsbury, Also I treat cream with lactase (I use Colief used to treat colic in babies) to make my own cream cakes and ice cream.

Sorry - I should explain more. The reason your DS reacts to milk is not because of the milk proteins but the milk sugar (lactose). Your DS needs dairy for his bones but by buying lactofree milk and yoghurts that taste nice and just like normal dairy products he can have the dairy he needs without suffering the lactose intolerance.

Gluten intolerance and lactose intolerance go together because of the damage the gluten does to the gut - even if the classic coeliac villius atrophy is not present.

Just reintroducing dairy is stupid advice if it is making him ill. He needs lactofree milk.

MoreBeta, hello.
I was recently tested for Celiac but it cam back ok. Is there a test for non celiac gluten intolerant? I haven't really eaten dairy since January as this was causing me problems. I also cut out wheat and then when I reintroduced it, I'd find I was fine some days and then had the same problems of needing to rush to the loo on other days. I went back to the GP who tested for celiac but as I say that's come back fine.
I've never really liked milk, so I wonder if I've just always had an issue with it. Can I ask, is lactose intolerance ALWAYS a symptom of gluten intolerance? Or can you have one and not the other?

Also, if it's ok, what are the symptoms that you had with your gluten intolerance?

I am convinced that something isn't right but the results have come back ok. I am constantly tired, a bit depressed, have probs with dairy, haves aches and niggles that make me feel like I'm 93 instead of 43. I also have alot of digestive issues - which are just unpleasant and occasionally embarrassing. If I know, for example, we are going out for the afternoon, then I don't eat lunch for fear of being caught short with no access to a loo. Sorry if that's TMI.

ProtectingMynormalnickname, sorry to side track your thread with my questions to MoreBeta.

I just wanted to say that we were told that DD was reacting to the protein in the milk and not the lactose so we were told that she couldn't have goats milk either. She also has a legume allergy so Soya was also ruled out. She was prescribed nutramigen until just recently, so nearly 4 years so I don't mean to sound ungrateful for not getting her GF bread on prescription, as we've had alot of help from our GP. It's just a shame that with a real serious wheat allergy, some GF stuff, like bread and pasta, is the only safe convenience food we can buy and it's SO expensive and like you I must spend about £9-£10 per week on the stuff.

mumat - no there is not a test for non coeliac gluten intolerance - it is a diagnosis by exclusion. In other words when all other possibilities have been excluded by testing and then gluten is finally excluded the symptoms disappear that is a strong indicator. I have had all the coeliac tests done including colonoscopy/endoscopy. I also had a wheat allergy test last week to exclude that possibility.

Lactose intolernce often goes with gluten intolerance because of gut damage - but lactose intolerance can be present for other reasons and nothing to do with gluten.

My syptoms are wide ranging. Lots of bowel symptoms as you describe plus arthritic pain and severe interstitial cystitis (bladder pain), itchy skin, ingrowing hairs, leg tremors, numbness in fingers and hands and now worst of all have been told my spine might be collpasing due to osteoperosis.

I went to a conference about it a few montsh ago and the range of severe symptoms that people suffer is staggering. Despite that many doctors simply don't believe non coeliac gluten intolerance exists.

My consulatant and his colleagues though doing research worldwide now beleive that gluten intolerance is a wide spectrum disease cause dby mankinds relationship with wheat and that classic coeliac is only one manifestation of it.

Dd is actually coeliac. However, as we refused the endooscopy, (due to a gp cockup) we were denied GF on prescription. No "Gold Standard Test" I fecking HATE that term no prescription. After totally GF 5 years, a sympathetic locum at our new surgery gave it to us.
It's entirely at the GPs discretion. Dd has now had the endoscopy. We still have the prescription, but as someone else said, it's being cut back.
My whole family eat gf, it's not that expensive. Dd doesn't like the bread much so we just use alternatives.

That 'Gold Standard' thing annoys the pants off me too.

As I told my consultant the other day, its about time the 'colonoscopy gold standard' got ditched because the true 'gold standard is to see what hapens when gluten is removed. There are millions of people out there who suffer the ill effects of gluten and are denied treatment because doctors insist the colonoscopy showing villius atrophy is the only indicator of diagnosing gluten intolerance. TBH alternative medicine practicioners and a few very enlightened researchers are light years ahead of the rest of the medical profession on this. Indeed, I am convinced that many so called IBS sufferers are really non coeliac gluten intolerant - it is an epidemic because of our high gluten modern westernised diet.

I told the consultant at GOSH to stick her GOLD STANDARD up her arse! Trying to convince me that I needed to make dd eat gluten for 3-6 months so they could stick a camera down her throat to tell me something blatantly obvious! ONE biscuit made her scream all night! Fuck that! I didn't need free bread that badly!

We did have the endoscopy and colonsocopy done just so we'd know whether we need never try it again (i.e. if he was allergic) or whether we should keep trying occasionally to see if he's grown out of it (the intolerance). In fairness, the reaction he gets to gluten is milder than that which he gets from dairy.

We do make our own cakes and biscuits every week. DH was making bread, but DS won't eat the only recipe we've found so far. He likes the new recipe Genius bread. DS can take packed lunch to school but a) he could do with the calories from a cooked meal as he struggles to maintain his weight and b) he struggles with low blood sugar (which isn't helped by the high glycaemic index foods he eats) and I think a cooked dinner would be better for this.

It's interesting to hear from you Beta. Our consultant is completely adamant that there is no such thing as lactose intolerance - just CMP. In fairness, we removed lactose first and saw some improvement. Then also excluded gluten and saw more improvement. When we excluded dairy as well, he was like a different child overnight. Solid bowel movements for the first time in three months, full of energy etc.. That's why I'm so reluctant to try it now when we're just starting to enjoy some normal family life!

And Saggy our consultant said it would need to be 6-8 weeks before the endoscopy. Due to his cock up and the crap communication with the regional hospital, it was 16 weeks before we went in. That's a lot to put a 3 year old through me thinks. And he wonders why I don't just listen and act on his every word ...

Mine said 3-6 months. She has just after 7 GF years had an endoscopy. from the time we told the paediatrician she wanted the test, and were advised to start on gluten, to actually having the procedure at GOSH, was 10 MONTHS! The ONLY reason that we went for it, is that DD has very few symptoms nowadays, and she wanted the test for her own peace of mind.
With regards to school lunches, we were told categorically, it wasnt going to happen! I bought DD a large thermos container, and sent her to school with chunky soups, jacket potatoes with beans, curry, casserole... There are lots of things you can send. Whatever you do though, dont send hot pasta. BIG, SNOTTY MISTAKE! Cold pasta salad is good too. We used to save an extra portion of dinner for tomorrows lunch.

There are suggested monthly amounts according to age and sex which are on the coeliac society website. If a GP agrees to prescribe they usually use these as a guide for a maximum amount.

Upthread somebody suggested the dietician told the GP to prescribe GF foods, can I just clarify dieticians can request supply but the decision whether to prescribe is the GPs, they can and often do refuse.

In our area the dieticians fairly frequently request stuff that is refused by GPs. I wonder if they would request as much as they do if it was on their own budgets and not somebody elses.

Saggy that's awful re the 10 month wait. We even tried to go privately to speed it up but could not find anyone to do it any quicker. It sounds like your DD's symptoms might not have been too bad - we had blood in stools in the end which was just horrid (and hence the colonoscopy too). Thanks for the dinner tips. I will definitely try some of those out if I don't persuade the LA that they are not making reasonable adjustments under the Equality Act.

Thanks all for your input. Has been very useful.

I have a DS who is severely dairy allergic. (to the point of anaphylaxis.) He is also allergic to Soy.

My GP's at first point blank refused to prescribe ANY suitable formula for him. They recommended I try him on almond milk. He went into anaphylaxis. So now Nut allergic too.

It took me 3 months after HAVING to stop BF (due to having to go onto other meds for my epilepsy incompatible with BF, had to stop overnight.), and getting nearly £500 in debt by not paying my bills so I could buy him the Nutramigen 2 advised by the HV (I had been on a dairy free diet since he was 8wo on advice of BF counsellor due to severe colic and reflux in DS3), before they accepted that it was just a financial impossibility for me to afford to buy milk that wouldn't KILL my DS when I am an unemployed Lone Parent on benefits.

They decided to prescribe him 6 x 400g tins a month. Bearing in mind it is his only milk source, and I have to use it in his cooking too. (can't use Soya replacements due to Soy allergy). I was actually getting through 10 x 400g tins a month (the tiddly ones, and they cost £15 a bloody tiny tin...), so was still paying for an extra 4 a month, costing me £60 a month.

When the GP tried to drop the scrip to 4 x 400g tins a month, I had a massive hissy fit minor emotional breakdown in the GP's surgery. .

They kept it at 6 tins a month.

On the plus side, they cocked up massively, and somehow sent a scrip over to the pharmacy for 30 tins. 24 of which can be renewed after 4 weeks. God knows how that happened, but I will only ask for 12 next month (split scrips)...

It has taken me 11 months to get a referral to the dietician, and he STILL doesn't have an appointment with the allergist, as the GP won't refer me. I started asking for an appointment with both the allergist and dietician in July last year. His Dietician referral wasn't put through until the 30th May this year (budget apparently...), until I stamped my feet and had another hissy fit at the GP's, receptionist must hate me! got cross, as he has other, more minor allergies, and as I am having to introduce each 'new' food VERY gradually, I don't know what to feed him half the time.

I still can't even get the GP to refer me to the allergist - something to do with the fact that as the waiting list is over 18 weeks, they can't refer until it gets to that point. But it won't, because not all GP's have stopped referring. So I can't even get skin tests done to find out what else he is allergic to, so I can bloody avoid it!!

AAAAARRRRRGGGHHHH!

Dealing with GP's budgets and allergies, even life-threatening ones, is just soooooo damn frustrating.

And Saggy< I didn't realise your DD was coeliac! DS1 is too. Though it took just 6 years to get the final diagnosis from first cutting out gluten...and I never got anything on prescription either. Not surprising with my GP's though, as if it is this hard to just get milk that won't kill DS3, something that 'merely' causes DS1 internal bleeding is hardly likely to be a priority,is it...

Saggy - it must be our PCT, I know we are in roughly the same geographical area. Maybe if our PCT spent less on tarting up the main hospital, and didn't leave a brand new Minor Injuries Unit less than half-staffed and practically empty and unused, instead of the purpose it was meant for, our PCT might have the money for prescriptions for GF food, or milk for dairy allergic DC, or even maybe a bloody Neurologist for those who need to see one without travelling 60+ miles into another PCT...

Couthy, that's awful!!
Have you tried changing gps? We moved from East Hill to Ardleigh when we moved house. The difference is amazing! We've gone from turning up at 8am and sitting there waiting till 1pm, to calling at 8 for an appointment the same day and being in and out in 10 minutes! The time they have for you is amazing!
Or, doing what seems to often work, which is turning up at A&E out of hours in a panic! It worked for mum, DSDad was so I'll he nearly died. His consultant told him to 'live with it' he had an ongoing condition, so tough, basically! When he took a turn for the worse, mum took him to A&E and refused to leave until they helped him. It turned out that he had undiagnosed diabetes, and had been in Ketosis for months! His body had eaten itself to nothing!

The state of the Nhs is disgusting really! I don't know anyone with a positive story ATM!

Our dietician requested the GP to prescribe food. At first the GP was reluctant, then I had to go back to the dietician,who requested again, and eventually we got it.
If you can get the paediatrician consultant/ dietician to agree that your child would benefit from food on prescription, then you have a fairly good chance of getting it.

Saggy if you don't mind me asking is your DD still under GOSH, which consultant? My son is under Gastro paediatrician at GOSH.
I fully understand your frustration about the cuts & NHS in general. It took our local hospital 4 months to diagnose my DS. They constantly thought I was being a paranoid mum or that I just loved returning to hospital every other day.

I would really appreciate if someone could give me some recipe links to make my own breads & cakes as DS has milk, wheat, egg, soya & rye allergy. At present he keeps wanting to eat bread made from wheat. When he eats too much, the loose stools start, as soon as he stops his stools get better. He doesn't like the free from range & refuses to have it.