Calls for ban of gluten free food on prescription for coeliacs in the UK

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Tom from the Bournemouth and Poole Coeliac group shared this link on facebook today from the BBC website about a recommendation to scrap gluten free food prescriptions for UK coeliacs. An earlier BBC story also highlighted the NHS paying £17 for a pizza base which raised concerns too about biscuits and pizza which are by no means part of a healthy diet.

Here’s my take on it as someone married to a coeliac who uses or tries to use this valuable service on a monthly basis. Wheat makes me ill so I have to avoid it and hence I have tried many gluten free food options too.

So much gluten free food is now available in the shops and online that the sourcing is less of an issue. There are two sides to the quality and taste experience of what you can get on prescription. The aforementioned pizza bases are more like bricks – wise people would go without rather than subject themselves to it.

A lot of the bread is so awful dogs who will eat anything even pick the gluten free bread out! I myself have not really eaten bread unless I really had to until recently for a few years. This is because we have finally discovered decent bread, thanks to a post we saw on the Coeliac UK message board recommending it as the nearest thing to artisan breads, but sadly the most fabulous of the Finax bread mixes are only available on prescription. A real shame as many non-coeliac wheat/gluten allergy sufferers like myself would love to be able to buy/bake decent tasting products. After all the other gluten free breads they really are something to write home about and not difficult to make. The time is in leaving the dough to rise etc and the results terrific. Under the NHS rules those specific products cannot be generally available. Perhaps if available to both coeliacs, gluten intolerants and general avoiders the amount sold would increase and the price would come down.

You don’t need help any more to find the food but you do to pay for it due to how much more gluten free items cost. To buy the basic Fimax bread mix that is available to all (best ones are on prescription) from the Drossa website is a whopping £4.79 (yields 2 loaves or 4 small ones and let’s not forget the £6.50 for shipping as is 900g) compared with £1 or less for most 500g bagged bread mixes. At Tescos 4 brown rolls cost £1.20 but their gluten free own brand ones cost £2.20. 50p for 8 pack of crumpets but £2 for a Tescos free from pack of just 4 crumpets – from 6.25p to 50p per crumpet which is a whopping 8 times more. Our food bills for just the two of us are crazily high. A coeliac’s food bills are going to be considerably more and not through any lifestyle choice – the gluten damages the villi in their stomach lining. Perhaps the extra financial help could be paid a benefit like the winter fuel supplement for old people. The food on prescription costs scarily more than what you can buy yourself. Andrew caught sight of one bill for about £50 just for one bag of pasta and box of 6 packets of flour. Of course he loves that it comes on prescription as would not want the £50 to be coming from his own pocket at £7.14 per item. Note that by paying a

It raises difficult questions. And what about those who are not coeliacs but who will still be violently ill or suffer a chronic illness if they have wheat or gluten? Should they have to pay more because they have the wrong type of gluten intolerance? Their vomitting, diarrhea, uncomfortable bloating that keeps them awake at night or violent stomach cramps are just as painful and unwanted. And of course there are the sheer numbers of people these days reporting intolerances including a sharp increase in the amount of diagnosed coeliacs on the radar. There are others who could be coeliac but they refuse to eat wheat so that it is in the system for testing as it makes them too ill to be able to face it.

My husband are his mother are diagnosed coeliacs but we have equal love and sympathy for everyone who suffers when they eat gluten. We don’t think coeliacs are any more ‘special’ and believe everyone who has serious health issues when they eat gluten should be able to buy it without it costing them an arm and a leg.

It’s not just digestive issues too where a gluten free diet can be beneficial, even life changing. Take Aran Goyoaga, acclaimed pastry chef/food photographer and writer of as well a gluten free cooker book, for example. In her blog she writes about herself: “In December of 2005, I was diagnosed with Hashimoto’s Thyroiditis and in 2009, I developed Meniere’s Disease (or Autoimmune Inner Ear Disorder, not certain). I started reading about the benefit of a gluten-free diet for people with autoimmune conditions, so in late 2009, I started living gluten-free. In April of 2010, after exhaustive testing, I found out I have genetic gluten sensitivity, which seems to be the cause of many of my health issues. I have been living strictly gluten-free since then and will be this way for the rest of my life. All my symptoms have disappeared.” Aran’s symptoms left her “bedridden for days at a time” with “vertigo attacks followed by tinnitus and hearing loss”. Why should someone like Aran if living in the UK not get the same level of help as a coeliac. We’re all in it together.

Our GP’s surgery mess up Andrew’s order every single time such that it is a very stressful struggle for him to get his gluten free food under the present system and it can really waste NHS money too with their blunders (only prescribing 1 item instead of one case when the pharmacy can only get the items by case so the pharmacy is supposed to give Andrew the 1 packet, throw away the rest and the surgery get charged for the 11 that went in the bin all the same and which cost £10s of pounds!), so in our view taking that away from their incompetence would be a jolly good idea.

Those super aware of links between health and food could choose to spend their coeliac allowance on healthier GF food which is often not what is available on prescription which actually if properly assessed would make the NHS realise it contributes to health issues with all that grain (talking about the gluten free substitutes here), sugar, additives and processing. In fact an NHS Dietician talking to Andrew commented on this subject just how many of the coeliacs on gluten free diets she sees that are overweight or obese. There is part of me which from my reading thinks the ban could be a very good thing if it meant coeliacs stop centring their daily eating around all these processed grain products. Okay so I love the FINAX bread mixes, Isabel’s pizza mix and numerous gluten free chocolate cakes but I should not be having lots of them. Isabel’s is not too bad actually as is anything based on white rice flour, tapioca starch or potato starch from scientific evidence studied by the Jaminets to come up with The Perfect Health Diet.

Another issue if the NHS banned their prescriptions for coeliacs, would be finding where to buy all the fancy flours like teff flour from – at least the current system delivers them to a local pharmacy. We must have nearly a dozen different flours in our cupboard that most people would never have heard of. We have to shop at several supermarkets to get all the GF products we want to eat as it is and order online from different web shops incurring several delivery charges.

I’ve got it – why don’t the government start an online ordering service/website for a range of reasonably priced healthiest possible free from products, including vegetables, available to all including non-coeliacs with free delivery for those with chronic illness from their gluten intolerance. The profit they make from gluten free lifestylers can contribute to the food benefit payment paid to coeliacs and the like who will be severely debilitated if they eat wheat. There again the more I read the more I think the gluten free lifestylers may be wisely protecting themselves from cancer and chronic illness if they are reading beyond that and also avoiding processed foods, chemical contaminated food etc. Took Andrew to age 50 to be diagnosed as a coeliac so was he further damaged by his daily toast etc.?

Being pro the lifestylers trying to make better choices under the heading ‘you are what you eat’ seems a funny argument when many chain smoking grandparents sporting a ripe old age have just eaten whatever there was without thinking about it. However the food available to us has fundamentally changed over the last few decades from the more natural products they were brought up on and in war years where ‘grow your own’ was huge. Contrast this to life today when many children don’t know what common vegetables look like, farmed fish comes with a nice hit of pesticide, ready meals are the norm, genetic modification is littered all over the supermarkets, the animals we later eat are being fed with crap too and even the packaging can leech dangerous toxins when we heat up the food. The lifestylers may be better at risk management, but it also comes down to whether you want to spend time worrying about these things and if you don’t, I cannot blame you. Life is complex enough but as someone whose dietary changes has brought great health improvements I can’t ignore the food fetishists with the caveat that there is no one approach that works for all.

Seems to me if the government’s aim is for people to be healthy and not to be a burden to the NHS down the line, they need to address a much bigger picture than food being gluten free or not.