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Living with coeliac disease<\/a> is far from simple \u2013 as Independent readers made clear in response to news that children in the North West could soon lose access to gluten-free food<\/a> on prescription<\/a>.<\/p>\n Many shared the daily challenges of managing the condition, describing a gluten-free diet as not a lifestyle choice but a medical necessity. <\/p>\n 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.<\/p>\n Readers were appalled by suggestions from Cheshire and Merseyside health bosses that families could turn to food<\/a> banks instead, saying the idea \u201clacked basic compassion\u201d and that gluten-free items are unlikely to be stocked there.<\/p>\n Many also criticised what they saw as the creeping erosion of NHS<\/a> support for chronic conditions, arguing that decisions like this punish the poor for being ill. <\/p>\n Here\u2019s what you had to say:<\/p>\n Have to be very careful<\/p>\n I’m, at the very least, gluten intolerant \u2013 terrible reaction if I eat the stuff, so have to be very careful.<\/p>\n The good news is that there\u2019s a much wider range of products available than 20 years ago. They are readily available from major supermarkets, but the discounters don\u2019t stock it to keep down the number of product lines.<\/p>\n GF food is considerably more expensive but, fortunately, we can afford it. It\u2019s easy to see that a family with limited funds would find it unaffordable.<\/p>\n 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<\/a> so they can afford it themselves.<\/p>\n MellieC<\/a><\/p>\n<\/p>\n We\u2019ve always had to pay for it<\/p>\n 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 \u2013 not so bad when he was a two-year-old in 3\u20136 month clothes with the stomach capacity of a pigeon. But as he\u2019s grown, so has the cost.<\/p>\n 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\u2019t wanted to claim for the extra costs that incurs as I don\u2019t want to be labelled as one of those mums). His coeliac disease is a medical condition that requires additional daily living costs.<\/p>\n This is also applicable to adults with coeliac disease \u2013 they can claim PIP for coeliac, as even though it doesn\u2019t 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.<\/p>\n Sarah<\/a><\/p>\n It\u2019s not hard to eat gluten free with a little effort<\/p>\n Vegetables, fruit, fish, meat, rice and dairy are all widely available and naturally gluten free, and there\u2019s a surprising number of gluten-free products in most supermarkets \u2013 burgers, sausages, etc. Just read the ingredients.<\/p>\n The problem comes with bakery products, but they aren\u2019t 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.<\/p>\n So basically, it\u2019s not hard to eat gluten free with a little effort. Oh, and before the trolls get excited \u2013 my wife is a lifelong coeliac, so don\u2019t bother telling me I don\u2019t know what I\u2019m talking about.<\/p>\n Nickmj<\/a><\/p>\n I\u2019d love to get the bread back<\/p>\n I was diagnosed with coeliac disease in 2015 after years of \u201cit\u2019s just IBS<\/a>\u201d. Initially, I received bread and pasta on prescription as it was felt at the time that the availability of GF products was patchy.<\/p>\n 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.<\/p>\n 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\u2019s gone and that\u2019s that. I\u2019d love to get the bread back though, but I think it\u2019s very unlikely \u2013 such is life.<\/p>\n Hamps<\/a><\/p>\n It lacks basic compassion<\/p>\n This approach is wrong on at least two counts:<\/p>\n It lacks basic compassion and consideration of the effects of untreated coeliac disease<\/a>. (It is highly unlikely that gluten-free food<\/a> 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<\/a> system, the child may well become a long-term user of NHS<\/a> services owing to the damage caused. <\/p>\n kermit68<\/a><\/p>\n They would much prefer not to be coeliac<\/p>\n They would much prefer not to be coeliac. They would love to eat cheaper bread, pizzas, pasta, etc. It\u2019s not like there\u2019s a cure.<\/p>\n A life of gluten-free foodstuffs is a given \u2013 along with a side helping of people looking at them as if they are faddy eaters when they insist on knowing all ingredients.<\/p>\n avidmidlandsreader<\/a><\/p>\n Healthy food deserts<\/p>\n In corner shops, fresh fruit, vegetables, meat, fish and plain dairy are often either not available or much more expensive than in Sainsbury\u2019s.<\/p>\n 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.<\/p>\n Lornajacobs<\/a><\/p>\n Have a heart, NHS<\/p>\n You can barely fill a small basket for \u00a3100 a shop now. Have a heart, NHS \u2013 kids shouldn\u2019t go hungry because they can\u2019t afford overpriced gluten-free foods that they have to have. It\u2019s not a choice.<\/p>\n We\u2019re talking about prescriptions for specialist diets as decided by doctors that diagnose coeliac disease, not non-experts who fancy a change in their diet.<\/p>\n It\u2019s a disease. The food that treats it should be as readily available to diagnosed children as inhalers are to asthma patients.<\/p>\n Moo100<\/a><\/p>\n Some of the comments have been edited for this article for brevity and clarity.<\/p>\n Want to share your views<\/a>? Simply register your details below. Once registered, you can comment on the day\u2019s top stories for a chance to be featured. Alternatively, click \u2018log in\u2019 or \u2018register\u2019 in the top right corner to sign in or sign up.<\/p>\n Make sure you adhere to our community guidelines<\/a>, which can be found here<\/a>. For a full guide on how to comment click here.<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"Your support helps us to tell the story From reproductive rights to climate change to Big Tech, The…\n","protected":false},"author":2,"featured_media":188663,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[45],"tags":[102,6636,56,54,55],"class_list":{"0":"post-188662","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-nutrition","8":"tag-health","9":"tag-nutrition","10":"tag-uk","11":"tag-united-kingdom","12":"tag-unitedkingdom"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/188662","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/comments?post=188662"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/188662\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media\/188663"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media?parent=188662"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/categories?post=188662"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/tags?post=188662"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}