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9:30am Wednesday 18th January 2012 in News By Amanda Williams
Oxfordshire’s health authority is set to be the first in the UK to ban gluten-free food from NHS prescriptions to save £350,000 a year.
If it gets given the go-ahead, it will affect thousands of county residents who get food such as breads, pastas, pizza bases and crackers paid for by the NHS.
Children and adults with coeliac disease cannot eat gluten, a product which is found in wheat, barley and rye, and is also often in products such as mayonnaise, soup, and other processed goods.
The only treatment for the disease is a gluten-free diet for life.
There are believed to be more than 6,000 coeliac sufferers in the county and symptoms can range from mild to severe abdominal pain, to osteoporosis, and even bowel cancer.
Last night, the move was condemned by charity Coeliac UK, which said NHS Oxfordshire was the only trust to consider the “draconian” move.
Chief executive Sarah Sleet said: “The primary care trust has said it does not give food on prescription to other groups with food intolerances.
“Coeliac is not a food intolerance, it is an auto-immune disease. It’s very wrong of them.”
NHS Oxfordshire, which decides how health service money is spent locally, said in Oxfordshire it spends £350,000 each year on around 25,000 prescriptions for gluten-free foods for people with coeliac disease.
A spokesman added: “Twenty or thirty years ago, only a small range of gluten-free foods were available and these were relatively expensive.
“To enable people to manage their disease, GPs were able to provide gluten-free foods on prescription.
“However, in recent years, there have been considerable improvements in the types of foods available in shops and supermarkets.
“The NHS does not provide food on prescription for other groups of patients whose diseases are associated with, or affected by, the type of food they eat.
“For these reasons, we are considering whether or not the local NHS should continue to provide NHS prescriptions for gluten-free foods.”
Sarah Sheldon, from Jericho, Oxford, was diagnosed with coeliac disease three years ago.
A unit of gluten free food is classed as the equivalent of either 250g of pasta or 400g of bread.
The mum-of-three, in her 50s, said she is eligible for around 14 units of food on prescription each month.
Mrs Sheldon said: “I am in two minds about this. People who are allergic to dairy do not get food on prescription.
“I do think there’s a case to maybe let people have the staple foods, such as bread.”
A public consultation has opened and will run until February 3.
l The questionnaire can be filled in at http://bit.ly/xUfNWB. Comments can also be emailed to talking.health@oxfordshirepct.nhs.uk or posted to Communications and Engagement, NHS Buckinghamshire & Oxfordshire Cluster, Jubilee House, 5510 John Smith Drive, Oxford Business Park South, Oxford, OX4 2LH COELIAC DISEASE FACTFILE Coeliac disease is caused by a reaction to gluten.
It is a disorder of the small intestine that occurs genetically.
Symptoms may include severe diarrhoea, wind, bloating, constipation, fatigue, stomach cramp and mouth ulcers.
In young children, symptoms can occur after weaning on to cereals containing gluten. They include muscle wasting in arms and legs, bloated tummy, irritability and failure to gain/lose weight.
If you think you have coeliac disease, continue eating gluten and seek advice from your GP.
Comments(123)
Coeliac UK
says...
10:44am Wed 18 Jan 12
Darkforbid
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12:02pm Wed 18 Jan 12
CJB1985
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12:19pm Wed 18 Jan 12
WitneyGreen
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12:39pm Wed 18 Jan 12
SwampieUK
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12:46pm Wed 18 Jan 12
LadyPenelope
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12:53pm Wed 18 Jan 12
SwampieUK
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12:57pm Wed 18 Jan 12
WitneyGreen wrote:So what you're saying is that when someone is diagnosed with coeliac disease (which happens via bowel biopsy, in case people think it's just a 'fad' diet) - they not only have to adapt to gluten-free variants of their normal foods, they should also change the type of food they eat too?
Gluten free products are readily available in supermarkets these days. In addition, people who need to eat a gluten free diet can and do use other foodstuffs as 'staples' - the assumption that everyone 'needs' to eat bread and pasta as their staples is outdated when there are so many alternatives available, some of which, particularly pulses, are cheaper, tastier and healthier than bread and pasta anyway. It sounds like most coeliacs need nutritional advice and guidance, and help on how to make interesting, varied and affordable meals, not a regular presciption of boring gluten-free stodge.
SwampieUK
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1:13pm Wed 18 Jan 12
LadyPenelope wrote:Few examples which come to mind (taken from our local Tesco via online groceries app right now):
My local shop stocks the basic gluten free products, as do most others nowadays. They are certainly NOT 4x the price!
I know someone with Coeliacs disease, and she just cooks using ingredients she CAN eat, and doesn't bother with prescription gluten free stuff.
There's SO much more gluten free choice available nowadays, so no need to have free prescriptions.
SwampieUK
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1:24pm Wed 18 Jan 12
LadyPenelope wrote:Sorry about a 2nd reply - but people with coeliac disease do NOT get free prescriptions. They have to pay £7.40 per item-type, just like everyone else.
My local shop stocks the basic gluten free products, as do most others nowadays. They are certainly NOT 4x the price!
I know someone with Coeliacs disease, and she just cooks using ingredients she CAN eat, and doesn't bother with prescription gluten free stuff.
There's SO much more gluten free choice available nowadays, so no need to have free prescriptions.
rosie-a
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1:57pm Wed 18 Jan 12
Charlotte Oxford
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2:15pm Wed 18 Jan 12
eatmygoal
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2:26pm Wed 18 Jan 12
LadyPenelope
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2:33pm Wed 18 Jan 12
SwampieUK wrote:That's a fair enough point Swampie; as someone who doesn't really buy any processed foods, then cutting gluten out my diet wouldn't be as difficult as it would for some. A 400g loaf of bread would last me a fortnight, so I have to put it in the freezer!
LadyPenelope wrote: My local shop stocks the basic gluten free products, as do most others nowadays. They are certainly NOT 4x the price! I know someone with Coeliacs disease, and she just cooks using ingredients she CAN eat, and doesn't bother with prescription gluten free stuff. There's SO much more gluten free choice available nowadays, so no need to have free prescriptions.Few examples which come to mind (taken from our local Tesco via online groceries app right now): Crumpets - 4 for £2. Normal Tesco ones are 8 for 55p (7p each, so 7x more expensive) Rolls - 4 for £2.20. Normal 6 for 67p (11p each, so 5x more expensive) Naan bread (single) - £2. Normal 55p for 2 (28p each, so 7x more expensive) Victoria sponge (small) - £3.50. Normal £1.70 (so 2x more expensive) Baguette (2, small) - £3. Normal 59p for 2. (30p each, so 5x more expensive) Bagels (2) - £2. Normal £1.25 for 5 (25p each, so 4x more expensive). I compared items from their FreeFrom range against Tesco own-brand (or 'value' brands). Branded items, or 'Finest' would be even more expensive.
SwampieUK
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2:47pm Wed 18 Jan 12
LadyPenelope wrote:With regard to breakfast cereals - most aren't gluten free. Either they contain:
SwampieUK wrote:That's a fair enough point Swampie; as someone who doesn't really buy any processed foods, then cutting gluten out my diet wouldn't be as difficult as it would for some. A 400g loaf of bread would last me a fortnight, so I have to put it in the freezer!
LadyPenelope wrote: My local shop stocks the basic gluten free products, as do most others nowadays. They are certainly NOT 4x the price! I know someone with Coeliacs disease, and she just cooks using ingredients she CAN eat, and doesn't bother with prescription gluten free stuff. There's SO much more gluten free choice available nowadays, so no need to have free prescriptions.Few examples which come to mind (taken from our local Tesco via online groceries app right now): Crumpets - 4 for £2. Normal Tesco ones are 8 for 55p (7p each, so 7x more expensive) Rolls - 4 for £2.20. Normal 6 for 67p (11p each, so 5x more expensive) Naan bread (single) - £2. Normal 55p for 2 (28p each, so 7x more expensive) Victoria sponge (small) - £3.50. Normal £1.70 (so 2x more expensive) Baguette (2, small) - £3. Normal 59p for 2. (30p each, so 5x more expensive) Bagels (2) - £2. Normal £1.25 for 5 (25p each, so 4x more expensive). I compared items from their FreeFrom range against Tesco own-brand (or 'value' brands). Branded items, or 'Finest' would be even more expensive.
RE: the flour - you can make really nice egg pasta with gluten free flour rather than bread, so could use the leftovers for lunch instead of sandwiches? Salads? Aren't most breakfast cereals gluten free?
I also recall using the gluten free flour to make a pizza base once when cooking for my coeliac friend!
Darkforbid
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2:57pm Wed 18 Jan 12
John35
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3:14pm Wed 18 Jan 12
EMBOX1
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3:21pm Wed 18 Jan 12
PSwift
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3:29pm Wed 18 Jan 12
SwampieUK
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3:37pm Wed 18 Jan 12
John35 wrote:The figures I gave for items above were taken from the Tesco Groceries App which gives real-time prices. The Gluten Free items were all Tesco branded Free From items. The prices for other non-gf items were for normal (but not premium) goods, unless otherwise stated.
Some things stated here including those by Coeliac UK are half-truths. Yes gluten-free breads and flours may cost four times as much if you compare them with value brands, but not every non-coeliac buys value flours. Comparing Dove's Farm with McDougalls might be a more valid comparison in which case gluten-free flour may be only 1.5 times as much.
It is often suggested that coeliacs will cheat if they do not get prescription foods, but I am not sure to how many people this actually applies. Some of us get the most horrendous symptoms on ingesting any gluten, so we aren't motivated to cheat! I would like to see the NHS get some high quality quantitative evidence on this "cheating" before making a decision. Where is the often quoted evidence that suggests coeliacs getting prescription foods are more likely to stick to a gluten-free diet?
For people of limited means - the poor and the elderly, prescription foods might still be a good idea. Therefore, a possible compromise might be to offer such foods to those already getting free prescriptions. However, since we are often told to reduce high GI foods, I don't believe that consuming copious amounts of bread, pasta and flour is a good thing - therefore people receiving such food should be constantly monitored by a dietitian. Fortification is a non-issue these days unless bread and flour is all you eat. There are plenty of other very nutrient dense foods. Fortification was originally intended to help poor victorians who consumed only white bread!
Elderly coeliac
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3:37pm Wed 18 Jan 12
suesmithoon
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3:56pm Wed 18 Jan 12
John35
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4:16pm Wed 18 Jan 12
Remove a treatment (the sole treatment) from all Oxfordshire residents whether or not there is a risk of harm.
Rosieh
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4:22pm Wed 18 Jan 12
LadyPenelope
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4:26pm Wed 18 Jan 12
laura west kong
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4:32pm Wed 18 Jan 12
SwampieUK wrote:That's exactly what I do (California, USA). I can't take 2 minutes in the morning to make a sandwich to bring for lunch because I can't eat not only gluten, but now most grains as well. I have to cook everything from scratch and make sure that I prepare enough food the night before so that I can pack leftovers the next day. I'm not saying this to complain, just stating it as a fact of my life. If I want to stay well, this is what I have to do.
WitneyGreen wrote:So what you're saying is that when someone is diagnosed with coeliac disease (which happens via bowel biopsy, in case people think it's just a 'fad' diet) - they not only have to adapt to gluten-free variants of their normal foods, they should also change the type of food they eat too?
Gluten free products are readily available in supermarkets these days. In addition, people who need to eat a gluten free diet can and do use other foodstuffs as 'staples' - the assumption that everyone 'needs' to eat bread and pasta as their staples is outdated when there are so many alternatives available, some of which, particularly pulses, are cheaper, tastier and healthier than bread and pasta anyway. It sounds like most coeliacs need nutritional advice and guidance, and help on how to make interesting, varied and affordable meals, not a regular presciption of boring gluten-free stodge.
So, rather than taking 2 minutes in the morning to make a sandwich for a packed lunch, they then need to spend 15 minutes cooking (and then also washing up!) a meal with pulses.
Most of the main meals we eat are home prepared and cooked. Many processed foods contain gluten - so it's easier that way. But I wouldn't want to have to start cooking meals which normally were just sandwiches.
And lentils for breakfast with your (gluten free) cereal doesn't sound quite right ;)
SwampieUK
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4:48pm Wed 18 Jan 12
John35 wrote:The problem is not so much the processed food aspect - but the staple food aspect - particularly bread.
Remove a treatment (the sole treatment) from all Oxfordshire residents whether or not there is a risk of harm.
The treatment is a gluten-free diet, not any particular food. We should remember that apart from whole cereal grains (which very few people normally eat) only processed food contains gluten. Nearly all food in its natural state is gluten free so eating natural food is one treatment option.
coe114c
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6:00pm Wed 18 Jan 12
sillyyak
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6:31pm Wed 18 Jan 12
sillyyak
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6:32pm Wed 18 Jan 12
jenijo
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6:39pm Wed 18 Jan 12
sam2973
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7:07pm Wed 18 Jan 12
sam2973
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7:08pm Wed 18 Jan 12
Darkforbid
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8:01pm Wed 18 Jan 12
TempestJT
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8:45pm Wed 18 Jan 12
Darkforbid
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9:18pm Wed 18 Jan 12
TempestJT
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9:21pm Wed 18 Jan 12
Darkforbid
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9:37pm Wed 18 Jan 12
Choosparp
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11:53am Thu 19 Jan 12
LadyPenelope wrote:Making egg pasta is a great option for the occasional dinner where you have to entertain a Coeliac friend. Now think about daily life for a young family with working parents. I cook from scratch most evenings but I certainly don't have time to make fresh pasta when I get in from work, and a packet of gluten-free spaghetti in my local supermarket is £2.09 compared to 76p for the supermarket's own brand of wheat pasta.
SwampieUK wrote:That's a fair enough point Swampie; as someone who doesn't really buy any processed foods, then cutting gluten out my diet wouldn't be as difficult as it would for some. A 400g loaf of bread would last me a fortnight, so I have to put it in the freezer!
LadyPenelope wrote: My local shop stocks the basic gluten free products, as do most others nowadays. They are certainly NOT 4x the price! I know someone with Coeliacs disease, and she just cooks using ingredients she CAN eat, and doesn't bother with prescription gluten free stuff. There's SO much more gluten free choice available nowadays, so no need to have free prescriptions.Few examples which come to mind (taken from our local Tesco via online groceries app right now): Crumpets - 4 for £2. Normal Tesco ones are 8 for 55p (7p each, so 7x more expensive) Rolls - 4 for £2.20. Normal 6 for 67p (11p each, so 5x more expensive) Naan bread (single) - £2. Normal 55p for 2 (28p each, so 7x more expensive) Victoria sponge (small) - £3.50. Normal £1.70 (so 2x more expensive) Baguette (2, small) - £3. Normal 59p for 2. (30p each, so 5x more expensive) Bagels (2) - £2. Normal £1.25 for 5 (25p each, so 4x more expensive). I compared items from their FreeFrom range against Tesco own-brand (or 'value' brands). Branded items, or 'Finest' would be even more expensive.
RE: the flour - you can make really nice egg pasta with gluten free flour rather than bread, so could use the leftovers for lunch instead of sandwiches? Salads? Aren't most breakfast cereals gluten free?
I also recall using the gluten free flour to make a pizza base once when cooking for my coeliac friend!
TempestJT
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12:09pm Thu 19 Jan 12
Choosparp wrote:Why is pasta so essential? My son is 5 and has coeliacs. He has a full and varied lunch box everyday (not always sandwiches) and a cooked dinner every night. He also rarely has cereal for breakfast. I'm a single parent and work full time but it's not an issue for us.
LadyPenelope wrote:Making egg pasta is a great option for the occasional dinner where you have to entertain a Coeliac friend. Now think about daily life for a young family with working parents. I cook from scratch most evenings but I certainly don't have time to make fresh pasta when I get in from work, and a packet of gluten-free spaghetti in my local supermarket is £2.09 compared to 76p for the supermarket's own brand of wheat pasta.
SwampieUK wrote:That's a fair enough point Swampie; as someone who doesn't really buy any processed foods, then cutting gluten out my diet wouldn't be as difficult as it would for some. A 400g loaf of bread would last me a fortnight, so I have to put it in the freezer!
LadyPenelope wrote: My local shop stocks the basic gluten free products, as do most others nowadays. They are certainly NOT 4x the price! I know someone with Coeliacs disease, and she just cooks using ingredients she CAN eat, and doesn't bother with prescription gluten free stuff. There's SO much more gluten free choice available nowadays, so no need to have free prescriptions.Few examples which come to mind (taken from our local Tesco via online groceries app right now): Crumpets - 4 for £2. Normal Tesco ones are 8 for 55p (7p each, so 7x more expensive) Rolls - 4 for £2.20. Normal 6 for 67p (11p each, so 5x more expensive) Naan bread (single) - £2. Normal 55p for 2 (28p each, so 7x more expensive) Victoria sponge (small) - £3.50. Normal £1.70 (so 2x more expensive) Baguette (2, small) - £3. Normal 59p for 2. (30p each, so 5x more expensive) Bagels (2) - £2. Normal £1.25 for 5 (25p each, so 4x more expensive). I compared items from their FreeFrom range against Tesco own-brand (or 'value' brands). Branded items, or 'Finest' would be even more expensive.
RE: the flour - you can make really nice egg pasta with gluten free flour rather than bread, so could use the leftovers for lunch instead of sandwiches? Salads? Aren't most breakfast cereals gluten free?
I also recall using the gluten free flour to make a pizza base once when cooking for my coeliac friend!
And while I'm happy to eat a salad any time try convincing my 5 year old son to have salad or a tub of lentils for his school lunch every day when everyone else has sandwiches (school dinners are impossible for a Coeliac). Breakfast from the supermarket is limited to a handful of corn or rice-based cereals with little nutritional value, so a decent fibre-enriched bread for toast is hardly "resorting to convenience food" as some seem to be suggesting, and it's expensive and often hard to find as many have already pointed out.
Unless you have Coeliac disease, or live with someone who does, it's unlikely you'll fully appreciate the amount of planning ahead and expense it can take just to stop yourself getting ill - every meal time for the rest of your life. Having access to affordable alternative foods to help is not a luxury.
Darkforbid
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12:15pm Thu 19 Jan 12
TempestJT
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12:30pm Thu 19 Jan 12
coe114c wrote:I concur.
This discussion is going to carry on going round and round in circles. The NHS should be educating people about proper nutrition. It is easy to eat gluten free without processed foods and I very rarely get stuff on prescription or buy 'free from' foods in supermarkets. Without a shift in our culture though people are still going to hanker after their white bread, ready made cakes and biscuits, pies etc.
eatmygoal
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1:33pm Thu 19 Jan 12
Darkforbid wrote:May I ask Darkforbid, do you receive any state benefits?
---Having access to affordable alternative foods to help is not a luxury.---
Yep, NHS "buy my food for me", it cost less and is less effort if you do...
Do you think conning people with the "I have to plan my diet" argument?
John35
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1:51pm Thu 19 Jan 12
Unless you have Coeliac disease, or live with someone who does, it's unlikely you'll fully appreciate the amount of planning ahead and expense it can take just to stop yourself getting ill - every meal time for the rest of your life. Having access to affordable alternative foods to help is not a luxury.
Darkforbid
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2:28pm Thu 19 Jan 12
LadyPenelope
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2:51pm Thu 19 Jan 12
no2cuts
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3:10pm Thu 19 Jan 12
John35 wrote:Are people wedded to convenience? Are the prescriptions for gluten-free food totally convenient? Or do they involve appointments with a Dietitian to discuss options then appointments with doctors to get a prescription, then regular trips to pharmacies to collect and pay. I don’t mean to complain, just put things into context from the perspective of a 25 yr old.
Unless you have Coeliac disease, or live with someone who does, it's unlikely you'll fully appreciate the amount of planning ahead and expense it can take just to stop yourself getting ill - every meal time for the rest of your life. Having access to affordable alternative foods to help is not a luxury.I am a coeliac and I do not agree with this at all. I think you are wedded to convenience. There is absolutely no NEED to eat pasta or bread ever: there are so many other things you can eat. I think as a society we should get away from the idea that cereal based products are a necessity. We call them 'staples' and the somehow makes them sound essential, but clearly anyone can live without them. It is a little less convenient, but not much more difficult or time consuming at all.
iklhik
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4:37pm Thu 19 Jan 12
oxfordborn
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6:03pm Thu 19 Jan 12
SwampieUK
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7:37pm Thu 19 Jan 12
no2cuts wrote:For us, prescriptions work with my wife ticking items on her repeat prescription and handing it into the pharmacy which is 5 mins walk away. Pharmacy drops repeat prescription into doctors who authorise it and issue new prescription which pharmacy picks up. This can take a few days before the prescription is ready, and as the bread we get is 'fresh' bread (baked the day before delivery using specially processed flours which are wheat based, but have had the gluten removed I believe - and far more like real bread than the stuff in supermarkets) and as they only bake on particular days, it can again be a few days before the bread arrives at the pharmacy. 5 minute walk round the corner to get the bread.
John35 wrote:Are people wedded to convenience? Are the prescriptions for gluten-free food totally convenient? Or do they involve appointments with a Dietitian to discuss options then appointments with doctors to get a prescription, then regular trips to pharmacies to collect and pay. I don’t mean to complain, just put things into context from the perspective of a 25 yr old.
Unless you have Coeliac disease, or live with someone who does, it's unlikely you'll fully appreciate the amount of planning ahead and expense it can take just to stop yourself getting ill - every meal time for the rest of your life. Having access to affordable alternative foods to help is not a luxury.I am a coeliac and I do not agree with this at all. I think you are wedded to convenience. There is absolutely no NEED to eat pasta or bread ever: there are so many other things you can eat. I think as a society we should get away from the idea that cereal based products are a necessity. We call them 'staples' and the somehow makes them sound essential, but clearly anyone can live without them. It is a little less convenient, but not much more difficult or time consuming at all.
The suggestions around cooking completely from scratch are great if they work for you. But please don’t assume that access to an uncontaminated cooking facility exists, it certainly doesn’t in my student accommodation ;)
It might be a little unrealistic to expect the UK population to give up cereals as the staple way of getting carbohydrate (so John35 might need to just accept that this is the case). I think that children with coeliac disease have the right to a sandwich made from gluten free bread. Sure if they have a brilliant mum who will prepare rice cracker sandwiches then this is one option but this isn't always applicable and isn’t school/ teenage life hard enough without making yourself ‘different’?
I think that this proposal by the NHS in Oxfordshire is wrong. The fact that there are such apposing responses suggests to me that the prescriptions should remain available so medical people can decide when they are required on a case-by-case basis.
From my experience, the supply chain is long and maybe there is some opportunity to make efficiency savings here?
evain
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2:36pm Fri 20 Jan 12
Darkforbid
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3:55pm Fri 20 Jan 12
elperrohavuelto
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4:33pm Fri 20 Jan 12
evain wrote:I am not a Coeliac and I think this decision is disgusting because the implications of not keeping to a strict diet can have such devastating effects.
This is disgusting, Gluten free food should be available to coeliacs on prescription either that or the manufacturers that supply to supermarkets should have to be forced to charge a normal price for their goods the food is more expensive to produce therefore more expensive to purchase so i think should be continued on prescription.
In that case dont give nicorette to smokers on prescription - they can stop smoking.
Stop giving anti obesity drugs to overweight people - they can stop eating.
Coelicas have no choice but to eat this food and the NHS needs to reevaluate this !
fkcukuhaters
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4:42pm Fri 20 Jan 12
LadyPenelope wrote:Ultimately Coeliac's are deprived of other 90 % of the world foods . There is not so much to eat is you suffer from Coeliac Disease . You obviously know nothing about living on a gluten free diet and all the health problems it causes . So unless you get diagnosed with CD you know nothing !
Ultimately, there are SO many foods that a coeliac CAN eat, so why not focus on these? Why do you HAVE to eat bread or pasta etc...?
Choospath - I have a young family and work, and cook from scratch every night too, and fresh pasta takes about 10 mins to make and 3 mins to cook - hardly much effort.
You can also make giant ravioli for school lunches, and get them to pick their own fillings.
fkcukuhaters
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4:45pm Fri 20 Jan 12
EMBOX1 wrote:We don't want your apology !
After reading all these posts, I apologies to those who suffer from this awful problem. I wasn't aware it was such a debilitating illness if not managed correctly.
However...
It seems clear that if the so-called "gluten-free" foods in the supermarkets are in fact NOT gluten free, then the supermarkets need to be taken to task. There should also be no reason why the prices are 2 to 7 times more than regular varieties.
Do health-food/whole food shops not have a better range of products, and if so, what is the price difference?
TempestJT
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4:50pm Fri 20 Jan 12
fkcukuhaters
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4:50pm Fri 20 Jan 12
suesmithoon wrote:How the Fcuk can you downgrade a serious auto immune disease to a ‘intolerance’ ?
Reading through people’s comments it’s clear that there are strong feelings on both sides of the argument. I don’t have Coeliac disease and I don’t claim to be an expert on ‘medicine’ or’ diet’.
As a taxpayer I interpret from this thread that Oxfordshire’s NHS are trying to:
•Remove a treatment (the sole treatment) from all Oxfordshire residents whether or not there is a risk of harm.
•Ignore the national guidelines that would give fair access to everybody; whatever your postcode.
•Justify their plans by downgrading a diagnosis to ‘intolerance’ (to make it sound like a fad or phase that people go through).
•Lie to us by saying that the availably in shops is equal to pharmacies and that everybody will afford/ bother.
•Make us feel guilty for spending £350’000 without putting this into context . What do taxpayers spend on all prescriptions? On hip fractures? Infertility treatment? Cancer?
•Spend my money on this distasteful process of taking away a treatment from people rather than improving things.
I can only conclude that I must oppose NHS Oxfordshire's plans- otherwise what on earth will they do with my NHS next?
TempestJT
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4:50pm Fri 20 Jan 12
fkcukuhaters
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4:55pm Fri 20 Jan 12
TempestJT wrote:I think the problem is people who rely in prescriptions are too scared to research their food or think for themselves. It's sad to read such incorrect comments from so many coeliacs who are uneducated about their own illness!
To be frank, gluten free living is neither restrictive or hard. I know as I do it everyday for my son and never use prescriptions. People are obsessed with white bread, pasta and cake! Its not essential at all in a diet.
I think the problem is people who rely in prescriptions are too scared to research their food or think for themselves. It's sad to read such incorrect comments from so many coeliacs who are uneducated about their own illness!
fkcukuhaters
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4:56pm Fri 20 Jan 12
RainbowH
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6:51pm Fri 20 Jan 12
TempestJT
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7:38pm Fri 20 Jan 12
fkcukuhaters wrote:And these prescribed products are available to buy online, which you would know if you researched it!
TempestJT wrote:I think the problem is people who rely in prescriptions are too scared to research their food or think for themselves. It's sad to read such incorrect comments from so many coeliacs who are uneducated about their own illness!
To be frank, gluten free living is neither restrictive or hard. I know as I do it everyday for my son and never use prescriptions. People are obsessed with white bread, pasta and cake! Its not essential at all in a diet.
I think the problem is people who rely in prescriptions are too scared to research their food or think for themselves. It's sad to read such incorrect comments from so many coeliacs who are uneducated about their own illness!
:S is all I can say . The prescriptions provide breads and other foods that are 1 unavaliable in 90 % of shops and 2 the supermarket shops don't put all the vitamins and minerals in the foods which real gluten free prescription companies do.
RainbowH
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7:59pm Fri 20 Jan 12
listentoyourself
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8:47pm Fri 20 Jan 12
RainbowH
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8:59pm Fri 20 Jan 12
SproKet
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10:11pm Fri 20 Jan 12
Darkforbid
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5:32am Sat 21 Jan 12
angryfreak
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12:00pm Sat 21 Jan 12
Darkforbid wrote:You are missing the point this is not a lifestyle choice it's a matter of life and death . You are very very lucky you don't have CD !
This article shows just how dependant on the NHS some people are becoming is using it for lifestyle shopping choices ever right? Although I understand that when the 'free' products weren't available the NHS had to supply these product but is it right to expect this to go on for ever, I wonder what the total UK cost is? And can the UK afford this for products that are available in supermarkets? The only other option is make it available from the NHS at full cost, after all it is just food
angryfreak
says...
12:05pm Sat 21 Jan 12
TempestJT wrote:TempestJT what a strange comment. People with CD do nothing but research looking for new foods all the time and if knew treatments come avliable . I read books about CD that doctors are too lazy to read.
fkcukuhaters wrote:And these prescribed products are available to buy online, which you would know if you researched it!TempestJT wrote: To be frank, gluten free living is neither restrictive or hard. I know as I do it everyday for my son and never use prescriptions. People are obsessed with white bread, pasta and cake! Its not essential at all in a diet. I think the problem is people who rely in prescriptions are too scared to research their food or think for themselves. It's sad to read such incorrect comments from so many coeliacs who are uneducated about their own illness!I think the problem is people who rely in prescriptions are too scared to research their food or think for themselves. It's sad to read such incorrect comments from so many coeliacs who are uneducated about their own illness! :S is all I can say . The prescriptions provide breads and other foods that are 1 unavaliable in 90 % of shops and 2 the supermarket shops don't put all the vitamins and minerals in the foods which real gluten free prescription companies do.
Darkforbid
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2:19pm Sat 21 Jan 12
SupaMum
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2:21pm Sat 21 Jan 12
xjohnx
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2:56pm Sat 21 Jan 12
Darkforbid
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3:59pm Sat 21 Jan 12
Ians view
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5:37pm Sat 21 Jan 12
elperrohavuelto
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6:05pm Sat 21 Jan 12
xjohnx wrote:What an idiot, after 70 plus post on the topics you’re still referring to Coeliac DISEASE as an intolerance..... if you can’t understand the core issue of a problem keep to page 3 of the sun.
I don't want my tax money spent on feeding people with a food intolerance. I helped pay (via taxes) for the research and diagnosis and don't begrudge it for a minute. However, gluten free is NOT a treatment or medication. The taxpayer should not foot the bill.
elperrohavuelto
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6:21pm Sat 21 Jan 12
Ians view wrote:There are a lot of people here claiming to be a Coeliac but have very little understanding of the disease and the prescriptions currently available to them, which leads me to think some people are telling porky pies to try an legitimise their invalid point.
Gluten-free foods are: Gluten-free bread, pizza, pasta, biscuits, cakes, cornflakes, etc
Are these "essentials"?
I'm gluten-free, but do not buy these alternative junk foods, my health is too important to me.
Coeliac UK wants the NHS to give people free junk food!
Those of us who are unable to consume gluten, who have read up on the alternatives, are aware that the alternative products are potentially as bad for our health as gluten.
Why is Coeliac UK so ignorant - or do they have a vested interest in the sales of junk food?
Darkforbid
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1:41pm Sun 22 Jan 12
SupaMum
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5:02pm Sun 22 Jan 12
Darkforbid
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5:51pm Sun 22 Jan 12
Ians view
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8:10pm Sun 22 Jan 12
SupaMum
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8:21pm Sun 22 Jan 12
Darkforbid wrote:All children deserve a varied and healthy diet, I couldn’t agree more. But equally for a child’s social development they need to share and be part of many things people like you are brushing aside such as eating a pizza, being at a party and actually being able to eat a slice of cake, sharing in a biscuit, and having sandwiches in their lunch boxes even if their bread is homemade or prescription brought.
SM using a your robbing kids argument is pointless...
And childish...
There are many other food options available, and is getting kids used to eating altered versions of food they should avoid, wise anyway...
SupaMum
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8:29pm Sun 22 Jan 12
Jackholly
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8:43pm Sun 22 Jan 12
Darkforbid wrote:Well id prefer my tax money being used to give these people food on prescription then to the drugie scum that choose to pump their veins with that stuff and then rob our houses to fund their dirty habbit!! Just so we can pay for the luxury of topping up their habit with methadone?? Shut them in a cell until they sweat it out and then give them counselling once they come round.
┄Why should my daughter not have some help with her food when a drug addict can have methadone free !!!!!┄
I'm not finding it cost more, so the NHS should pay, much of an argument...
Watch someone going through heroin withdrawal, and you might have some idea
Darkforbid
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9:59pm Sun 22 Jan 12
Darkforbid
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10:02pm Sun 22 Jan 12
Jackholly
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9:01am Mon 23 Jan 12
Severian
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8:50pm Mon 23 Jan 12
sam2973 wrote:I think this post says everything about what is wrong with the NHS. Drug addicts, smokers, alcoholics etc. can all have treatment for controllable problems that are their own fault, but coeliacs are being penalised to save money.
My 10 year old daughter has coeliac desease and has to have a gluten-free diet. This is not easy to follow, even the simple thing like a milkshake can contain gluten. The next time you go shopping just take a moment to look at the ingredients list and im sure you will be surprised to see just what the simple things contain. Why should my daughter not have some help with her food when a drug addict can have methadone free !!!!!!
listentoyourself
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9:32pm Mon 23 Jan 12
Darkforbid
says...
9:44pm Mon 23 Jan 12
Darkforbid
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11:27pm Mon 23 Jan 12
Jackholly
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8:31am Tue 24 Jan 12
listentoyourself wrote:Not really it’s actually a pain as we start, then have to stop for the other workers who aren’t on site and then restart, so it’s a late finish. But it does give me the time to connect and see what our local JSA moaner is dribbling
Jackholly: Harsh words, but have to agree with a lot of what you have said.
And on a lighter note, you have fallen on your feet with that job, only labouring job I know that allows you to leave for work at 9.01 am. Are you hoping to be in for the first tea break?
Jackholly
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8:32am Tue 24 Jan 12
Darkforbid wrote:Maybe you could get a job?
That's a great idea perhaps then we can stop paying the massive amount of tax on the above mentioned products, that is used to support the NHS for the people who don't drink or smoke...
Or maybe the woman your quoting can give her child something nutritious to eat like fruit, instead of empty bread based calories
Jackholly
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8:50am Tue 24 Jan 12
SwampieUK
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8:58am Tue 24 Jan 12
Little-more then a legend
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9:13am Tue 24 Jan 12
BrianAdams
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9:20am Tue 24 Jan 12
SwampieUK wrote:Hi SwampieUK, I am meeting with the Communications and Engagement Co-ordinator for the NHS Buckinghamshire & Oxfordshire on Monday the 30th regarding this issue because if it goes ahead it will have a big impact on my family as my wife and youngest son were both born Coeliacs. You have made some really important points that I would like to share with the Co-ordinator if you are happy for me to do so?
I can't believe the lack of sensitivity, the intolerance (love the irony!) and aggressive attitude in some of the comments on here. Personal attacks on people's situations are unnecessary, even if you disagree with their opinions.
"Give fruit instead of empty calories bread" - why does having bread exclude people also having fruit? A balanced diet is one which is varied.
A number of people have suggested what coeliacs really need is a dietician and the reason they rely on bread, pasta and other is because they're uninformed.
My wife (a nurse) has been advised by a dietician. Her advice included the need to eat more calories than usually recommended due to the weight loss she suffered before her diagnosis. She suggested bread, pasta and savoury crackers (among other things) as good ways to bulk out meals, and to increase calorie intake. It is not uncommon for coeliacs to be underweight, even after diagnosis (my wife has put on weight, but is still technically classed as underweight).
A friend of ours from university is a dietician in a hospital and deals with coeliacs on a daily basis. My wife and her will often talk about gluten free meals, recipies and suggestions, with my wife often being told the latest peer reviewed advice from journals etc.
So to suggest that my wife eats bread and pasta just because she's uninformed is completely wrong.
We cook from scratch most of the hot meals we eat, and when doing so, it's pretty easy to eat gluten free. So please don't suggest that the reason my wife eats bread and pasta is because she's lazy and can't be bothered to cook.
And to suggest that we can just buy the items we get on prescription via the internet isn't always correct. Some things you can get, e.g. the flour she used to get for bread baking etc - however at £8 for 500g, it's just not affordable for us. However, we do order them when we need to bake a birthday cake, as no other bread we've tried comes close to getting anything like the same success. And please, don't start saying that coeliacs shouldn't have a birthday cake! Yes, we understand balanced diets etc - but treats like these are just that - treats!
Similarly, the fresh bread she gets isn't available off prescription. From what I've seen of the bread, the difference between the shop bought, and the prescription bread is like comparing normal bread to a cheap bath sponge, although I have to admit, the prescription bread still is nowhere near as good as normal (gluten) bread.
Now, make all the prescription items we have/had available at reasonable/comparabl
e prices to normal food, and we'd be happy. The trouble is, often they cost more because they cost more to make. Economies of scale affect it etc.
Someone suggested that the NHS should subsidise these gluten-free items in shops to make them more affordable - I disagree with that because, as currently stands, to get prescriptions for coeliac disease you need to have been properly diagnosed (including an endoscopy). I know many people who have cut out gluten without being diagnosed - and I think it's wrong for the NHS to spend money subsidising products for people who haven't been properly diagnosed. The benefit of the prescription system is that a doctor has to agree to each one. I have heard of doctors overriding the PCT managers who restricted certain items simply because it was in the patient's best interest to have certain items prescribed.
I say, leave it to the doctors who know the patient and their situation, can give advice and tailor the treatment and prescription to what they see as being best for the patient - not what some faceless NHS/PCT manager has decided would help them hit their cost reduction target for the year. Get the manager to eat, cook, bake and eat out gluten-free for a couple of months and see how they find it. I wouldn't be surprised if the menu at a PCT meeting/event which included food/buffet would change if they did - in the very few occasions my wife attended a PCT event which included food, my wife never found any items that were definitely GF (it's actually the drug reps who usually go the extra mile for them and pop to Tesco on the way!). Having someone take the effort to have included something GF for you really encourages you.
And finally, I believe saying "NHS gluten free food is nutritionally a poor form of diet" is quite wrong. Either that, or the British Dietetic Association and the Primary Care Society for Gastroenterology who helped come up with the UK prescribing guidelines for coeliac disease are badly educated.
The PCTs (effectively the managers) are saying they know best over these highly respected and experienced organisations. Trust the experts, not the bean counters. And I trust those organisations far more than unknown people on here giving quick comments suggesting coeliacs shouldn't eat bread or pasta etc.
Darkforbid
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10:36am Tue 24 Jan 12
SupaMum
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1:33pm Tue 24 Jan 12
BrianAdams
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2:19pm Tue 24 Jan 12
listentoyourself
says...
2:56pm Tue 24 Jan 12
SupaMum
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4:10pm Tue 24 Jan 12
Darkforbid
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4:30pm Tue 24 Jan 12
Darkforbid
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4:32pm Tue 24 Jan 12
Jackholly
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4:35pm Tue 24 Jan 12
Darkforbid
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10:24pm Tue 24 Jan 12
Jackholly
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8:38am Wed 25 Jan 12
Darkforbid
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10:59am Wed 25 Jan 12
Jackholly
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11:21am Wed 25 Jan 12
Darkforbid
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1:22pm Wed 25 Jan 12
Jackholly
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1:46pm Wed 25 Jan 12
Mark Monaghan
says...
9:07am Wed 1 Feb 12
EMBOX1 wrote:Embox, please see your GP and ask to be tested for Coeliac Disease.
"People who are allergic to dairy do not get food on prescription" You said it! Supermarkets have a good range of food for lactose intolerant and coealics, not to mention many other dietry types (kosher/halal/vegan, I know these aren't medical conditions, but anyway). I seem to have a problem digesting wheat but I would never dream of asking the NHS to give me food. That's a line I would never cross.
Mark Monaghan
says...
9:14am Wed 1 Feb 12
Darkforbid wrote:Darkforbid, Coeliacs are not simply planning their diet, their gluten free diet is the ONLY treatment for this serious medical condition.
---Having access to affordable alternative foods to help is not a luxury.--- Yep, NHS "buy my food for me", it cost less and is less effort if you do... Do you think conning people with the "I have to plan my diet" argument?
Mark Monaghan
says...
9:18am Wed 1 Feb 12
Darkforbid wrote:Darkforbid, I cannot understand your position, do you mean you are homeless & beg on the streets?
┄May I ask Darkforbid, do you receive any state benefits?┄ Yep JSA, not that I like being on benefits... Most of the time I just make money on the streets, but being zero-benefits crosses you off some lists I need to be on like housing...
Mark Monaghan
says...
9:53am Wed 1 Feb 12
coe114c wrote:coe114c, it is NOT easy to eat gluten free with or without processed foods.
This discussion is going to carry on going round and round in circles. The NHS should be educating people about proper nutrition. It is easy to eat gluten free without processed foods and I very rarely get stuff on prescription or buy 'free from' foods in supermarkets. Without a shift in our culture though people are still going to hanker after their white bread, ready made cakes and biscuits, pies etc.
Mark Monaghan
says...
9:57am Wed 1 Feb 12
Darkforbid wrote:Yes, coeliacs do eat rice, Darkforbid.
What?! Just eat something else as staple like rice...
Mark Monaghan
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10:03am Wed 1 Feb 12
listentoyourself wrote:listentoyourself wrote:
It sounds an awful condition/illness, and please excuse my ignorance on Coeliac disease, however please help me understand, as I think people with Nut allergies have to do an equal amount of product research before eating, do they get foodstuffs on prescription? I appreciate the extra time it takes to cook, but a vast amount of people with varying illnesses take a lot longer than what would be the norm to do many daily chores. Maybe as many say there needs to be pressure on suppliers to reduce costs, but trying to see all arguments maybe the costs are higher due to economies of scale? But on a lighter note, do not worry about the NHS, they were charging me £7.40 per month for 8 tiny folic acid tablets (to go alongside Methotrexate) for some time before I realised I could either pay the £100 odd per year pre-payment, or get 100 of them for £2 myself at Tesco (sorry to some for mentioning the word Tesco). And please don’t have a pop about me mentioning the NHS, its tongue in cheek as I have over the years had a lot to thank them for.
Mark Monaghan
says...
10:12am Wed 1 Feb 12
Darkforbid wrote:Darkforbid, I am all for anyone having any medical treatment without blame so I don't agree it is fair to withhold medical treatment from alcoholics, smokers , obese people or drug addicts.
That's a great idea perhaps then we can stop paying the massive amount of tax on the above mentioned products, that is used to support the NHS for the people who don't drink or smoke... Or maybe the woman your quoting can give her child something nutritious to eat like fruit, instead of empty bread based calories
Mark Monaghan
says...
10:18am Wed 1 Feb 12
Darkforbid wrote:Darkforbid, you say:
So basically SM, saying that some kids are already suffer from lack of care of their illness... And that's with the scripts. My point would be without the scripts, parents will have to learn proper CD management instead of relying on NHS foods But then why bother you like most of the against the 'ban' posters, only seem to be able to see gluten free products... Not the vast range of other food options
Mark Monaghan
says...
3:45pm Wed 1 Feb 12
Darkforbid wrote:Darkforbid,you say:
┄Not SUB human, lazy scum maybe haha. No I don’t think that, in fact depending on how they got there I am normally understanding. BUT when someone claims to be one (despite the fact they seem to be online so often) starts dribbling off nonsense that could dramatically impact people’s lives it gets my back up, sort your life out first and start contributing again. THEN come and try and change the world so people don’t see sandwiches as a staple part of lunch..... Yep your so understanding, as your posts show... Do you have anything to say about the subject,,,... No didn't think so Anyway back on subject, lots of people in the UK follow a gluten free diet for heath reasons, its not just people with CD... Many of them are on benefits, they just follow a gluten free diet because its thought to be a healthy diet, none of them moan about it being unaffordable in fact many claim its a cheaper healthy diet... In fact the only ones objecting seem to be those who, get reduced rate or free food from the good old NHS I've not seen a real point made in all these posts about why this NHS help should continue, all the argument miss the fact that there are other forms of calories out there... Which are allot cheaper than modified wheat
Mark Monaghan
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3:57pm Wed 1 Feb 12
xjohnx wrote:xjohnx, you say you have paid for research into (presumably) Coeliac Disease.
I don't want my tax money spent on feeding people with a food intolerance. I helped pay (via taxes) for the research and diagnosis and don't begrudge it for a minute. However, gluten free is NOT a treatment or medication. The taxpayer should not foot the bill.
Mark Monaghan
says...
4:00pm Wed 1 Feb 12
BrianAdams wrote:Brian, this is an excellent petition, I have signed it & wish it all the best.
If you are against this move, please sign this petition to stop the NHS removing gluten-free prescriptions for Coeliacs: http://epetitions.di rect.gov.uk/petition s/27968
Mark Monaghan
says...
4:09pm Wed 1 Feb 12
Ians view wrote:Ian, you say:
After reading ‘Dangerous Grains’ ‘Wheat Belly’ and other sources of information on food an nutrition, I feel lucky to have discovered the truth about gluten. Had my autoimmune system not responded by causing me such pain, I would still probably have been eating gluten today. Socially, being excluded from the diet of the masses is problematic, but something I have learnt to deal with. It’s no good trying to hide the fact that we can’t eat certain foods. When I was diagnosed, I did not believe that after so many years I could no longer consume many everyday foods and drink products. I sought out the rather expensive, gluten-free products. I’m a curious person, so I continued to read food product labels and about foods. I thought it bizarre that vegetables were turned into pasta to have sauce poured over them, so I started to put pasta sauces over steamed vegetables. This saved me money and tasted much better than the vegetables that through a totally unnatural process had been turned into brittle shapes. Is there any evidence that the same nutritional benefit gained from eating fresh vegetables, can be gained from vegetables that have been turned into pasta? I started to look more closely at the ingredients of other gluten-free products that I like others was purchasing. These ingredients frequently included: Rice flour, Potato Flour, Corn flour, millet flour, Potato Starch, Modified Tapioca Starch, Maize Starch, Maize Sugar, Vegetable Oil, Modified Potato Starch, Hydroxypropyl Methyl Cellulose, Locust Bean Gum, Guar Gum, Sodium Caseinate, Sugar, Disodium Diphosphate, Sodium Carbonate, Modified Waxy Maize Starch, Tartaric Acid When I start to investigate these ingredients, I find: Tartaric acid - described as a muscle toxin and is linked to muscle damage. Soy – linked to cancer and other health problems Sodium Caseinate/Casein – linked to autism and cancer. Casein has a molecular structure quite similar to that of gluten. Sodium carbonate - According to the MSDS, Sodium Carbonate could cause irritant to the skin, eyes, ingestion or lungs. Repeated or prolonged exposure to the substance can result in organ damage. Vegetable Oil – many nutritionists warn against its consumption. Hydrogenated vegetable oil has been banned in two European countries What is the effect of turning rice into flour? Many nutritionists warn against white rice (brown rice ok), so can our digestive system deal happily in the long-term with this man-created substance? By inventing new food substances, are we creating new food intolerances for future generations? Do we really know better than nature? With so many question marks against the ingredients in substitute foods to those including gluten should we not be a little concerned about them? Is adults seeing celiac children eating sandwiches like their gluten-tolerant school friends more important than their long-term health? If someone can clear away all the questions marks, then perhaps the NHS should help families – even if this bill runs to millions of pounds. In Oxfordshire alone, the NHS bill for gluten-free substitute foods on prescription is about £350,000. Whilst there is so much uncertainty, and links between the ingredients of gluten-free substitute foods and poor health, it seems reasonable that the NHS should not be providing these foods on prescription. It would be better to make ready-meals, fast-foods and foods containing gluten less attractive and better labelling foods with gluten so that everyone reduces their consumption of gluten, potentially saving the NHS money as health improves. Many people are unaware of their gluten intolerance... many do not find out until they are adult’s in their 30’s or older. I see no reason why any child needs to eat sandwiches at school or at home. We need to ensure that nutritionally beneficial meals based on meat, organs, eggs and vegetables are available at every school – and that parents have the skills to feed their children at home.
Mark Monaghan
says...
4:11pm Wed 1 Feb 12
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EMBOX1 says...
9:42am Wed 18 Jan 12
You said it! Supermarkets have a good range of food for lactose intolerant and coealics, not to mention many other dietry types (kosher/halal/vegan, I know these aren't medical conditions, but anyway).
I seem to have a problem digesting wheat but I would never dream of asking the NHS to give me food. That's a line I would never cross.