Should GF food be available on the NHS?

I think that coeliac disease has always existed; it just wasn't diagnosed and is still not being diagnosed in many cases.
DD suffered years of problems and was not diagnosed (blood test followed by endoscopy) until just over 2 years ago. She was alerted to the possibility by a friend who is coeliac.

Does anyone know why the disease/condition seems so much more common nowadays? Or perhaps it existed before and just wasn't diagnosed.
My Mum put herself on a glutenfree diet in her later years, because of bad indigestion, and it did help. I used to buy her gluten-free bread from Boots, and she ate a lot of rice cakes. I can't remember how she managed after she had a stroke and went into a Care Home.

Coeliac Disease is an autoimmune condition where the body's immune system attacks the intestines and results in the patient being intolerant to foods containing gluten which is found in wheat oats barley and rye.

In my case I was diagnosed by a colonoscopy and endoscopy (which I found awful!) so now I'm on a gluten free diet for life. The symptoms that I had before diagnosis was that my whole skeleton was very painful especially when wakening I could hardly move the pain was horrendous!

I had terrible diarrhoea every day for months on end and I was very tired all the time. I slept a lot and obviously I was unable to leave the house and I lost a considerable amount of weight. Even after diagnosis and starting to learn what I could eat or not I still continued to have a terrible upset tummy and did not put on any weight. I got down to just under seven stone.

It turned out that I was lactose intolerant too. I now have Alara lactose free milk which thankfully I find is just like normal milk and can be bought at the supermarket.

Still my tummy didn't settle, eventually it dawned on me that yeast was causing me a problem too. Yeast is found in a lot of foods not only gluten free bread and other bakery products but it's in tins of soup, gravy powder, some sauces, stock cubes, savoury spreads etc. I've been classed as super sensitive so the slightest contamination of gluten sets me back for weeks with a terrible upset tummy once again.

I am unable to eat out unless I get in touch with them first to find out if they totally understand just what is required. It is vital that all their staff understand about cross contamination.

I have several other autoimmune conditions too. I am very grateful that I'm able to receive gluten free flour, crackers and pasta on prescription, as gluten free products are much more expensive than normal products.

Please do not class people like me who have been diagnosed with autoimmune conditions the same as alcoholics requiring alcohol on prescription as mentioned in a previous post. Autoimmune conditions are not self inflicted like alcoholism is or drug addiction etc.

I am also very grateful that I'm able to do my best as I know there are other people with health conditions much worse than mine.

My small Granddaughter in OZ has gluten, dairy and egg intolerance and any of these really upset her intestines so I feel for anyone unable to eat one of our staples.
I'm quite happy for gluten free bread and maybe pasta to be on prescription but think that cakes, biscuits etc. should be excluded as there are loads of sweet things that do not contain gluten. Keep people healthy!

As a coeliac I do get my bread on prescription. I get 6-8 loaves which I keep in the freezer and these last me three months. There are so many foods that coeliacs cannot eat and it is nice to have a slice of toast or a sandwich at times. I would not ask for prescriptions for cakes, biscuits etc and if I wish to eat them then i will buy them as a treat. All gluten free items are very expensive-understandably because they are not produced in bulk. I am very grateful that I get bread on prescription as the cost of a small loaf is over £3.00.We are lucky as coeliacs in this country and I never forget it-even if the bread doesn't taste fantastic. Believe me no-one asks to be a coeliac. It is a disease and if you don't stick to a gluten free diet it is eventually fatal. Because so many people choose to avoid gluten it has benefitted us coeliacs because manufacturers have produced so many different foods for us to choose whether to buy. When I was diagnosed at 21 (rather a lot of years ago now) the only gluten free food available was on prescription but it came in a tin and had to be cooked in the tin in a saucepan of boiling water. It was vile!
I do feel very strongly that we should not be penalised or vilified for using a prescription for a condition we do not wish to have. Nevertheless I am totally against the minority who ask for luxury items on prescription.

You haven't offended me, SPF - on the contrary I don't think most people realise what it is like to live with coeliac disease.

Separate toaster, please don't 'double-dip' the butter, checking every ingredient, eating out can be a nightmare, even if the menu says 'gf' can you really trust it, so most cooking is done at home using ingredients you know will be gf.
When we stay with DD she does tend to cook gf food for everyone; there is always bread in the house for the rest of the family but cakes are home-made with gf flour, any sauces are made with cornflour or gf flour etc etc.

I do hope that you are on the road to recovery

Thanks HildaW. I dont want to look as if I am attacking anyone.
I wrote the above to try to give others and non ceoliacs a view of what it is like. It is not fun but in a way lucky that I live alone and dont have to inconvience others in my attempts to try to get healthy. My own family do not understand "the rules" I have to live by. For instance if I have family for a meal everything is separate. I can not use the same spoon for ordinary food and GF foods. That can cause cross contamination which is going to be as unpleasant as if I had eaten a full non GF meal. Tiny amounts are dangerous to me. If anyone lived in my house I would have to have separate toasters for GF and non GF. I can not use wooden spoons etc I have to have plastic or metal. I have two sizes of clothes as tons of weight is lost if a mistake is made. I have injections every 3 months which are like liquid concrete. I hate it but know it had to be done.
I will never be cured but I feel that I did my best for my parents even to the point of destroying my health. It should not have been that way but there it is.
I hope I have not offended anyone.
SPF

Sugarpufffairy, sounds as if you had a very bad time and us non- coeliacs bitching about the cost of bread must seem very insensitive. You have every right to rant about your experience as a carer, it sounds quite abominable. I do hope things get better for you.

I was diagnosed with Ceoliacs Disease a few months after the death of my last remaining parent. I had been their carer for 20 years. During my time as carer I had the NHS make my life a misery with failed discharges and also discharging with LRTI (Lower Respiratory Tract Infection) and MRSA while I as carer was asthmatic and have Eczema. Talk about Infection control that was more like germ warfare. The NHS claimed to be Heart Surgeons and all sorts of othr types of highly qualified people but they could not see that the caree was nearly twice the size of the carer. They damaged their patient by giving medications I said do not give but they over ruled me and I knew as soon as I walked onto the ward, the skin was peeling off and they were stuck to a commode for several days.
There is a connetion between stressful events and the onset of Ceoliacs Disease. It is an auto immune disease and it affects the absorbtion of nutrients and leads to pernicious annemia. I have lactose intolerance too. I have DH - the skin condition connected to Ceoliacs. The inability to absorb nutrients and calcium and iron leads to bone decay. At first the symptom I had of Ceoliacs Disease was very urgent diahorrea. Can you just imagine how hard it is to cope with never knowing when your bowels are going to explode. It then leads to anxiety about going out or having peole visit your own home.
I used the cleansing poducts which are supposed to be for people with delicate skin. I turned bright red. I have also developed Hay fever All this suddenly happened to me aged 60 before that I was really very healthy.
I did not choose to be like this. If I had sued NHS for the damages done as carer I would be on for many thousands. I am stuck like this for the rest of my life. My children will never be carers after what they have seen happen to me. I think 8 loaves a months is cheap compensation for what the NHS did to me with their ignorant and uncaring attitude. You dont get cakes or biscuits or even some of the bread products It is a very short list to be chosen from. This is no choice any sane person would make. It is a burden I did not chose. Unlike the obese, or smokers, or alcoholics or drug addicts. They should have stopped. I stopped smoking, had one bad experience with alcohol and never again I have never taken drugs and I stopped eating too.
Sorry for the rant but I feel strongly on this subject.

No!

Hapgran - you're right, it was cystic fibrosis

No, French wheat wouldn't be OK, people with coeliac disease cannot tolerate gluten in any amounts, even barely discernible traces. It also means no beer - barley contains gluten too!

TriciaF - I think you are thinking of Cystic Fibrosis.

Are you sure that was coeliac disease, TriciaF?

I think my DD has been coeliac since birth; it caused colic, bad anaemia, terrible tummy pains all her life for no reason that we could find - and no GP could diagnose! - but not phlegm accumulating in her lungs. What you describe sounds more like cystic fibrosis; we know of two people who have died from this, one in her early twenties and the other one lived much longer because she had a heart/lung transplant.

When we were first starting a family we had friends whose first 2 babies had coeliac disease. They were very poorly children, had to have a special diet and a kind of physio daily to get rid of the phlegm accumulating in their lungs. Eventually died in their teens. The parents had incompatible genes and divorced.
I wonder if this is the same thing as the gluten intolerance that many people have now?
Also - good point about the level of gluten in wheat. French wheat has very low gluten, so maybe their flour would be OK?
And to answer the question - no, I don't GF foods should be on prescription, especially with the current economies in the NHS.

hapgran - quite right! So many people have jumped onto the gf bandwagon these days (including many American slebs) that a lot of people think it is 'being fussy' when it could in fact be a matter of life or death if not controlled. It can cause anaemia, inability to obtain nutrients from food etc and quite unpleasant physical symptoms.

However, by sticking to a very strict gf diet the small intestine can recover well.
Cornflour should not contain gluten either, but unfortunately some is adulterated with wheat (at least it is in Australia, not sure about the UK).
Cornflakes often have a coating on them which makes them unsuitable for coeliacs.

My DD was diagnosed as coeliac 2 years ago. She was previously a totally UNfussy eater and hates that now her diet is restricted and people think she is just being fussy. There is a lot of misunderstanding about coeliac disease - once you have it you are stuck with it for life. It is an auto immune disease, not an allergy or an intolerance. Gluten will cause your small intestine to become diseased in various ways over time and severely compromise your immune system ( I think I am over simplifying here but that is the gist!).
I did not see the item re prescriptions. My DD only gets a few basics on prescription and has to buy everything else.
Rice does not contain gluten and there are lots of other alternatives to gluten as mentioned.
PLEASE do not liken it to alcoholics being prescribed alcohol - we are talking a disease here not a lifestyle choice....

nanaval DD eats rice crackers, but even so has to be very careful - I bought the wrong ones once, thinking 'rice crackers' would be fine and gf, but the only ones she can tolerate are some authentic Japanese crackers. Some crisps have a coating too, so are also a no-no.

It must have been very difficult to source gf food 20 years ago, and it is good that you were diagnosed then - some GPs were obviously more aware than others.

phoenix yes, its too similar to cows, and having tried all the others ( soya, rice, hemp, almond) I find that coconut milk tastes most like cows milk.

When I was diagnosed with coeliacs twenty years ago it was virtually impossible to get gluten free products e.g. pasta, bread, crackers other than on prescription. Luxury foods such as cakes and biscuits have never been available on prescription. I no longer bother to get things on prescription and rarely eat GF bread or cakes as they are so expensive. It is possible to get by without. Instead I might eat crisps or rice cakes.

rosequartz -

thanks I thought I had read about the newer varieties of wheat being higher in gluten - surely here is the answer - go back to the old wheat and people won't have so much trouble digesting high gluten wheat. It would save so much pain and money for all concerned or am I being over simplistic?

There is fresh bread available on prescription which has to be frozen straight away, but I believe it's nicer than the long lasting stuff.

Yes, the bread is expensive, and it's just not as nice as wheat bread.

DD has been experimenting with banana flour, I don't know if it is available in the UK but she said it is very good (and doesn't taste of bananas, so can be used for pizza bases etc).

My DGS has wheat/ gluten free bread paid for by NHS.Perhaps this is for children only though. it costs a couple of pounds per loaf in the supermarket ( a very small loaf.)He is only allowd two per week.

There was a limit to what we could prescribe and things like biscuits were ruled out ages ago; most people just had bread I think; @ 8 loaves a month [mind you, I am going from memory here]. It was expensive, though.