Coeliac disease
My Consultant, who also has Coeliac as does his mother,said i should be getting GF foods via prescription. He said to phone my gp and tell them. That'll be fun in the first instance getting through.
Anyone Any experience of this. I'm in N.I.
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Hi @Doglover2 the following link might be of interest to you.
Take care.
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Hi @Doglover2, I was misdiagnosed with coeliac disease three years ago and had to buy GF food. Thankfully, only for c four months. I could not get it on prescription and was told it's a 'postcode lottery'. I'm in NW England. There was a possibility I could get GF flour on prescription but as I can't use the oven there was no point pursuing that; as the bread is so expensive too that might at least help you if you cannot get a prescription for all GF foods.
It's terribly expensive isn't it? I really hope you can get a prescription where you are. If affordability is a problem (it more than doubled my food bill), a food bank locally was also very kindly willing to help me and that they'd have 'looked out' for it/saved stuff for me. If you can't get through to your GP easily you could try pharmacists directly as they should know. I do wish you luck with it. I recall some people thinking it's a bit of a fad, it's really not and the gluten can cause further intestinal damage so it's not a 'luxury' but a must have.
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@Santosha12 Consultant said I've had it lifelong. It ties in with my severe ibs. I always suffered esp after eating bread with nausea and upper stomach pain ,Three yrs ago it was24-7,absolutely crippling ,hence the investigations ,Scope test, bloods, etc.. My GP largely ignored me doubled in two for five year's, This was 12 yrs ago. I think i had an accidental exposure to gluten, in sept last yr, but cant be sure where from as I don't eat out,anyway, I was in agony from then until three weeks ago. Like you I'm not allowed to use the oven as I often pass out. So flour might not be the best idea,though my sister in law would make the bread for me. Thank you for the comment. Its definitely not easy, my diet was already restricted before the confirmation of the CD. Best wishes.x
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@Bluebell21 Thank you. That's very helpful. X
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Hi @Doglover2 - my grandson was diagnosed with coeliac disease as a child some years ago & got a prescription, but only for GF bread; however it was rather hit & miss that this was always available.
My eldest daughter & her son are also in England (NE). I agree with @Santosha12 that whilst some may pursue a gluten free diet, for someone with coeliac disease, a GF diet is a necessity.
Hoping you do indeed get some help with this; have you been referred to a dietician?
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Best of wishes to you too @Doglover2. I forgot about a dietician, I wasn't allowed a referral to one here for coeliac but was referred last year when I was diagnosed with pancreatic failure; she has been really helpful and it was her input that got me on highly potent multivitamins and minerals. I do hope you can get a referral where you are.
I found (albeit for only 4 months) that managing contamination was crucial. I bought a new toaster for me because contamination from just minute crumbs was important to avoid. When my sister stayed i used my old toaster for her. It was like a military operation using separate utensils etc! I never bought toast bags which could have been an option.
Sorry if I'm telling you what you already know! Lots of best wishes to you and good luck sourcing prescriptions too. Take care x
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I'm not coeliac, so won't be any help re prescriptions unfortunately, but I am allergic to several different foods 😩 wheat being one of them.
In our household, we buy the own brand free from. It's not the nicest, but my Mum is allergic to yeast and I'm allergic to rice (nightmare with a wheat allergy), but it's also not the worst and it's quite considerably cheaper than the branded alternatives. We use it to make home made pizzas too.
For pasta, we use red lentil pasta or buckwheat pasta. The red lentil pasta is about £1.80 or so.
Also, just to echo what @Santosha12 said re food banks, definitely give food banks a go. If you have a community fridge nearby, they may have some gluten free produce
Really hope you can get some help with prescriptions 💖
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@chiarieds @Santosha12 Yes been through two dietitians. Not really helpful ,focused more on my ibs, but said I was following all protocols for it,should be ,ive had it 35 years.
I find it easy to source gf pasta i never liked pasta, but boy do I now, I'm glad of anything. Yes the cross contamination is a flipping nightmare. People just don't realise how easy it is to flare up big time .
Cheers! X
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@CountryMimi My sister in law makes the best gf pizza bases ever. She must have magic hands. 😆
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Mine was [wrongly] diagnosed via an MRI small bowel study that showed significant damage to my small intestine/a decreased absorption area but the reality is it can only be diagnosed from the scope, like you had (my gastroscopy was normal the month after MRI but another 3 months until I was told). All those years to diagnosis though, I really feel for you, and the cost GF stuff was astronomical prices xx
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@Doglover2 do you happen to know what flour blend she uses? 😋 really want a pizza now 😩🤣
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@CountryMimi Other than letting it rest before she rolls it she says she doesn't do anything special... who knew. !!
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So my gp point blank refused me a script for G-F food. Stating as its "easily available".Um,not where i live,. I can barely afford it when i do find it,The new gp,who was a very pleasant person i spoke to said "No problem we can do that for you", then had to apologise after being told No himself,They said they don't do it now, but Coeliac uk says yes your practice does still give it on script!..80 calls to get through to gp,4 hr wait to get a ring back,he went away and asked the clinical team as he was unsure if it was available,another 2 hrs later to be told no. They want my consultant to do it so referred me back to him and want me to contact his secretary.
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What a nightmare for you @Doglover2 you must be exhausted. I am glad Coeliac UK were able to help you.
Fingers crossed it can be sorted quickly for you.
Take care.
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@Bluebell21 Coeliac UK informed me of my surgeries script policy as far as g-f food goes,so armed with that knowledge i shall be forwarding a request to my lovely Consultant ASAP. My GP is so awkward, my consultant asked me to request a phycologist appointment and they refused that too. Gp at top of her voice screeched down the phone to me "And did he not do it"! Which I thought was pretty self explanatory as I was on the phone in that very minute requesting it... Good grief eh! 😵💫🤯
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