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Living with coeliac disease is far from simple – as Independent readers made clear in response to news that children in the North West could soon lose access to gluten-free food on prescription.
Many shared the daily challenges of managing the condition, describing a gluten-free diet as not a lifestyle choice but a medical necessity.
Several said they were lucky enough to afford it but worried for families who could not, while others recalled being diagnosed as a child and depending on prescriptions to stay healthy.
Readers were appalled by suggestions from Cheshire and Merseyside health bosses that families could turn to food banks instead, saying the idea “lacked basic compassion” and that gluten-free items are unlikely to be stocked there.
Many also criticised what they saw as the creeping erosion of NHS support for chronic conditions, arguing that decisions like this punish the poor for being ill.
Here’s what you had to say:
Have to be very careful
I’m, at the very least, gluten intolerant – terrible reaction if I eat the stuff, so have to be very careful.
The good news is that there’s a much wider range of products available than 20 years ago. They are readily available from major supermarkets, but the discounters don’t stock it to keep down the number of product lines.
GF food is considerably more expensive but, fortunately, we can afford it. It’s easy to see that a family with limited funds would find it unaffordable.
But putting it on prescription these days is, frankly, pretty ludicrous. Surely it cannot be beyond the wit of man to find a way to give the people who need it a bit more money so they can afford it themselves.
We’ve always had to pay for it
My son was diagnosed eight years ago, when he was two years old. He has never had a prescription for GF food as it was stopped for newly diagnosed patients before then. We have always had to pay for it – not so bad when he was a two-year-old in 3–6 month clothes with the stomach capacity of a pigeon. But as he’s grown, so has the cost.
However, I have found out recently that we can actually apply for DLA just for his coeliac disease (he also has diagnosed special educational needs, and I haven’t wanted to claim for the extra costs that incurs as I don’t want to be labelled as one of those mums). His coeliac disease is a medical condition that requires additional daily living costs.
This is also applicable to adults with coeliac disease – they can claim PIP for coeliac, as even though it doesn’t affect the mobility element, there are additional costs for the daily living element. Just something to bear in mind for those who are worrying about prescriptions being removed.
It’s not hard to eat gluten free with a little effort
Vegetables, fruit, fish, meat, rice and dairy are all widely available and naturally gluten free, and there’s a surprising number of gluten-free products in most supermarkets – burgers, sausages, etc. Just read the ingredients.
The problem comes with bakery products, but they aren’t essential. If only one member of the family is coeliac, then a gluten-free loaf can be frozen and used a slice at a time.
So basically, it’s not hard to eat gluten free with a little effort. Oh, and before the trolls get excited – my wife is a lifelong coeliac, so don’t bother telling me I don’t know what I’m talking about.
I’d love to get the bread back
I was diagnosed with coeliac disease in 2015 after years of “it’s just IBS”. Initially, I received bread and pasta on prescription as it was felt at the time that the availability of GF products was patchy.
Little by little, products were withdrawn, culminating approximately 16 months in with the withdrawal of the GF bread. This was despite an appeal from my gastroenterologist and a (rather half-hearted) effort from my GP, both of which fell on deaf ears at the ICB.
I was a bit angry about the withdrawal at the time as these products are very expensive but, at the end of the day, it’s gone and that’s that. I’d love to get the bread back though, but I think it’s very unlikely – such is life.
It lacks basic compassion
This approach is wrong on at least two counts:
- It lacks basic compassion and consideration of the effects of untreated coeliac disease. (It is highly unlikely that gluten-free food would be available at a food bank. But then those who made the decision will likely know nothing of food banks.)
- On a financial level, it is wrong. For a short-term saving by removing the prescription system, the child may well become a long-term user of NHS services owing to the damage caused.
They would much prefer not to be coeliac
They would much prefer not to be coeliac. They would love to eat cheaper bread, pizzas, pasta, etc. It’s not like there’s a cure.
A life of gluten-free foodstuffs is a given – along with a side helping of people looking at them as if they are faddy eaters when they insist on knowing all ingredients.
Healthy food deserts
In corner shops, fresh fruit, vegetables, meat, fish and plain dairy are often either not available or much more expensive than in Sainsbury’s.
Many of the poorest families live in areas described as healthy food deserts, so eating naturally gluten free is both more expensive and more time consuming.
Have a heart, NHS
You can barely fill a small basket for £100 a shop now. Have a heart, NHS – kids shouldn’t go hungry because they can’t afford overpriced gluten-free foods that they have to have. It’s not a choice.
We’re talking about prescriptions for specialist diets as decided by doctors that diagnose coeliac disease, not non-experts who fancy a change in their diet.
It’s a disease. The food that treats it should be as readily available to diagnosed children as inhalers are to asthma patients.
Some of the comments have been edited for this article for brevity and clarity.
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