Time to Go it Alone

[philaustin]

For several years I've been able to obtain GF food on prescription, which has been very helpful. To do this I've had to go for blood tests and an annual review. Now that Bedford NHS has cut GF on prescription I've decided that I won't be bothering with tests and reviews any more. I reckon I know enough about gluten to look after myself, and I reckon Coeliac UK are only useful for new coeliacs in their first year so I won't be needing them. They spend so little on research we don't stand a cat in hells chance of ever getting a cure of some sort. I hope Bedford NHS use the £350,000 (they say they'll save) wisely and don't just blow it on a few new highly paid managers.

[dang]

You were able to get GF food on prescription? That's unbelievable! I had no idea that could be an option. I just go to the GF aisle in the grocery store...

[Ummijan in reply to dang]

I've read about it but never bothered looking into it. I get healthy start vouchers for my kids (to buy fruit, veg and milk for them) which makes a big difference so I'm able to afford stuff I need for me. But can only get vouchers until kids are 5 (£3.10 per week per child).

Went on holiday last week and was shocked how it was cheaper to feed me then kids while out as all I had was salads lol.

I guess we all find our own strides, tricks and preferences.

[dang in reply to Ummijan]

It's good to know this. Thanks!

[philaustin in reply to dang]

Currently, 60% of the uk can get GF on prescription. It does sound unbelievable doesn't it. Why should the taxpayer have to subsidise a coeliac's diet just because they can't eat gluten? One good reason, to me at least, is that gluten free products cost more and it is nice to get a bit of help with that extra cost. I found gluten free 'white mix' from Juvela very useful as it enabled me to have the odd pie or cake now and again. (My wife is a brilliant cook). I asked Juvela how much that flour costs. It is £6.90 for a small box, but can only be bought through a pharmacist who adds their own mark up plus delivery charge, so it is no wonder the local NHS wants to cut GF on prescription. This does mean I'll need to find an alternative if I want a pie now and again. I refuse to buy GF bread at the prices they charge for it.

[dang in reply to philaustin]

I'm in Germany so I would have to check if this or a similar scheme applies here. It's something I never thought about, I always made sure my meds and prescriptions were covered, I didn't think about food. And come to think of it I've had to spend so much more on food because of my diet than on my medication. I certainly hope I can find a similar subsidy here, I suppose I should talk to my doctor or contact my public health insurer and find out.

This has been eye opening.

[philaustin in reply to dang]

I am surprised that there are people who don't know about GF on prescription. When we get diagnosed in the UK the hospital sends us off to a charity called 'Coeliac UK' for advice. Coeliac UK are good friends with all the GF food manufacturers, produce glossy magazines, gluten free directories, and apps for mobile devices, and tell us that we should be getting gluten free food on prescrition.

It makes sound business sense to get more people obtaining GF on prescription as the manufacturers can charge silly prices at the expense of the taxpayer, the pharmacies get a cut, and it keeps the couriers in business delivering little packages of GF food to pharmacies.

You can understand why the health service would want to cut GF on prescription to save money. (Which they probably use by creating new departments with a new highly paid manager in charge of each !)

[Rach_123 in reply to philaustin]

Do you have a good recipe for the gluten free bread?

[gfmum1 in reply to philaustin]

I'm not a bad cook - better since I had to go gluten free - but pastry was one thing which eluded me. I bought a book for a fiver in "The Works" on Saturday called "This is Gluten-Free" by Victoria Hall and it has a recipe in it for hot water pastry.

I made it on Saturday night, then used it yesterday to make the lentil & spinach patties from the book. Yes, it's a bit tricky but I followed the instructions to the letter & they came out perfectly! They would be perfect for taking to work for lunch as they don't fall apart. I'm looking forward to trying sausage rolls and meat & potato pasties with it.

I've got lots of gluten free books, including several with pastry recipes, but although I've tried a few of them none were as successful as this.

I should add that I have no connection with either the author/publisher/The Works, just a (very) happy customer!

[Jacks in reply to dang]

You're not coeliac then? On diagnosis it is so far the only treatment. The stuff on prescription is basic and you still pay per prescription.

[philaustin in reply to Jacks]

Yes, I am coeliac. I don't have to pay for prescriptions as I'm over 60.

[Hidden]

Hi Phil, a smart move. Another question worth asking is the nutritional value of prescription food as codex wheat starch is highly processed and low in nutritional value, its strength is taste and not nutritional value.

I haven't had food on prescription for over 15 years even though I'm entitled to it and I not only do not miss it I feel free and unaffected by prescription cuts.

To me the flip side of being able to get codex wheat on script is that anything below codex 20ppm is deemed gluten free by Coeliac UK and I'm not aware of any other countries stating that malt vinegar is safe for coeliac and the same goes for malted breakfast cereals. I like many others cannot tolerate these low levels when some countries interpret gluten free as none of the toxic grains and below codex so I see a massive advantage to stopping prescriptions for gf items.

I had to abandon Coeliac UK's food list as I kept getting ill and I worry for those who are newly diagnosed ingesting food with too much gluten for some of us.

Lastly if you live in N Ireland you can get codex on script at cost to the NHS of £7.00+ or they can cross the border into S.Ireland and buy codex over the counter for 2.5 Euro's when £7.00 is around 8 Euro's so its no wonder that we have the biggest coeliac society in the world and the NHS picks up the bill...

[philaustin in reply to Hidden]

Hi Jerry. I know you are at the extreme end of coeliac whch gives you additional problems, which you've taken in your stride. A shining example to us all !

It would be good if we could all follow your example and give up reliance on products manufactured by the likes of Juvela, Glutafin et al, and eat only naturally GF foods. The GF industry is big, and there are a lot of people making a packet out of it, whilst providing products that are of poor nutritional value.

This is making me think that instead of the NHS giving us the web address of Coeliac UK as soon as we're diagnosed, with offers of boxes of free samples from GF manufacturers, they should be sending us somewhere better, i.e. a place where we can get good advice on eating well without them trying to sell us GF products. Maybe Gluten Free Guerillas is that place.

[jill55 in reply to philaustin]

I have tried to obtain gluten free flour eg teff on prescription but it appears that this is no longer obtainable in my area. it seems they only want you to eat the over manufactured rubbish.

[Ummijan]

But do we really need GF products like bread or flour?

Go to local Asian/indian stores for cornflour or similar on the cheap and gluten free.

Bread and cakes aren't an essential part of the human diet, we can survive healthily of meats and fruits and nuts and veggies etc. I also find its cheaper for me then for my family cos I'm mostly just eating veggies with different herbs or spices depending on my taste moods.

As my hubs said to me, no point getting hung up on the old foods I miss and just enjoy that I can eat without getting ill. My taste buds will adapt and boy are salads starting to taste fun now

[philaustin in reply to Ummijan]

Lunch at work is a problem. Not enough time to munch through a salad and go for a walk in the fresh air, where I need the sunlight for the osteoporosis (vitamin D). Used to find myself starting a salad lunch early, eating half, going for a walk, then starting work again while trying to eat the rest while working. Bread isn't good but it is if you're on the go because you can knock a sandwich back in a couple of minutes and be off. Preparation is easier too. Salads need washing and shaking dry. Making a sandwich takes a few seconds. This is why people have sandwiches for lunch and sandwiches are always provided for working lunches and meetings. Convenient and quick. I'm going back to the salads again when the GF bread has run out, because I can't see any alternative. They won't allow us to have a microwave at work because they won't trust us to keep it clean, and the gluten wagon that comes around serves only fast food (gluten).

[DartmoorGuerrilla in reply to philaustin]

I'm resigned to the fact that I need to take my own food to work meetings now. While everyone else is complaining about their nasty stodgy sandwiches, I'm tucking into homemade quiche (GF pastry is very easy!) with a tasty filling, anything from bacon and tomato to cheese and leek. You get a much higher ratio of filling to carb than in a sandwich, and it holds together in a nice wedge. I make two or three quiches at a time, and freeze them ready sliced, so one batch of baking keeps me going for weeks. Occasionally people have asked to try a bit and inevitably say they'd rather have that than a sandwich. Obviously you have to like eggs though...!

[philaustin in reply to DartmoorGuerrilla]

Funny that. I had to go to a customer site and took some bought sausage rolls with me. Expensive, I know but it was a one off. Working lunch, trays of sarnies arrived and I got my lunch box out. I wish I could have had their sarnies. My shop bought sausage rolls were horrible.

[Penel]

Good luck with this Philaustin, I'm sure you will be ok.

Instead of sandwiches, perhaps you could try wraps? You can buy them but it's easy to make them too. I use a chickpea flour batter which I leave to soak overnight. They can be frozen once made.

I also use the flour to make a crust for things like meat pies.

bbc.co.uk/food/recipes/chic...

[philaustin in reply to Penel]

Thanks Penel. Leaving a batter to soak overnight sounds intriguing. I try to avoid fried food if possible.

[Penel in reply to philaustin]

Chickpea flour just takes a while to absorb water, it doesn't have to be as long as overnight. I use only a little olive oil, and it can be made in the oven, a bit like Yorkshire pudding. It's made in Europe where it's called socca or farinata

[Ummijan]

Maybe Mexican (corn tortillas)? Sushi? Hummus and veggie sticks? Hardboiled eggs with some veggies sticks can be quicker then a standard salad.

We all have different food hurdles but sharing helps us all learn ways to adapt out habits and think up ideas useful for us sorry if I'm coming across rude, just wanting to share some ideas and maybe be useful to someone.

I found a few tidbits on YouTube with rice n egg fritters, mini omlettes, making a sandwich but using lettuce instead of bread (or large mushrooms), homemade kebabs that can be frozen and defrosted as needed. Or meatballs that follow a similar concept as those protein balls that were a fad last year, the idea being that one makes a batch of homemade meatballs with veggies and egg and maybe rice if you want or potatoe and then cook and freeze to defrost when needed and two or three serves as a quick and suitable meal when on the run. You'll also find alot of Asian and or middle eastern shops have snacks that are made using none gluten based flours but not labeled gluten free.

Sorry, I love to experiment in the kitchen lol

[philaustin in reply to Ummijan]

No apologies required. You certainly are not rude, but very helpful, and I like your ideas and am very grateful for your sharing. I like experimenting too. but I don't want to have to eat fried food for lunch, and I don't want to have to heat a deep fat frier up before I go to work. Cold spuds or pasta are very appealing. Often I save leftovers for lunch the following day. I think that might be the answer; try to cook enough for dinner with leftovers for lunch the following day. Thanks again

[Rach_123]

Hi

I hope you don't mind me asking but since you have been ceoliac havevyou had to attend regular appointments /check ups ? The reason I ask is my dad was diagnosed a few years ago and he has never had any check ups since. I know he still suffers so I believe something is atilll not right but he has never been asked to go back.

[philaustin in reply to Rach_123]

I have had to go for blood tests every year, followed by a visit to the g.p. who checks the results and tells me I'm fine, which allowed the pharmacy to issue the gf food on prescription, according to the rules . I had a dexa scan when first diagnosed 7 years ago, and another two years later. I've had two annual visits to a dietician, but she was unable to tell me anything new; just weighed and measured me. Thats it. With the end of g f on prescription I doubt I'll see anyone else ever again unless I make the effort to do it. I get the impression they don't care really, but the feeling is mutual.

[Heman69]

It's your right to have gluten free on prescription don't let them take it from you it's abuse of your rights all it takes is one person to take a health board or gp to court and you would win. Nobody can take your right to A special diet away.

[philaustin in reply to Heman69]

I've come around to accepting the end of gf on script, hence my opening post 'It had to happen'. I would rather the money saved go to more serious health needs, but I have a sneaky feeling that it will just vaporise and then they'll be looking for something else to cut. I can look after myself. I think, legally, the Bedford Clinical Commissioning Group have a right to do anything they like. Incidentally I received the official notice from them today, two weeks after being told by the shop assistant behind the LLoyds pharmacy counter in Sainsburys! Nice letter, it says I can eat rice and potatoes instead of bread. I can imagine a sandwich made between two slices of raw potato, but I'lll give the rice sandwich a miss!

[Jacks]

I don't think it's new managers who'll benefit. I attended a meeting by the Department of Health about prescription cuts. It's not only coeliacs who are having postcode cuts - asthmatics are another one. It's to do with current spending and not new spending. Yes, someone in the audience shouted a suggestion it was for more managers but we were told it currently costs £40 a time for the NHS to provide an interpreter and other extra bodies have become a massive drain on the budget.

Cuts are affecting pharmacies and it's now predicted a quarter will close with the prescription cuts.

[philaustin in reply to Jacks]

I don't need an interpreter. My GP speaks perfectly good English.