Can it get any worse?

Hi I have had RA for 4 years now and it still is not under control, I can not take MTX as made my liver function test go to 193. So on Lefunamide and sulfaselazine .....not working to well.....

I now have been diagnosed with Celiac disease.......so really not happy......

Really worried about benefits aswell, I get ESA and DLA high rate mobility and middle rate care.

Now I have to live on a Gluten free diet and the food is so much more expensive....I am at my wits end and just about to give in....

Does anyone else also have Celiac? Where is the best place to get gluten free food?

13 Replies

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  • If your getting dla and esa don't worry about anything happening just yet. If you have to have another medical just appeal against it if you lose. As far as i can remember they will still pay you while your appeal is going on.

    Sadly i don't know nothe about Celiacs so i can't help you there.

    Hope you get sorted out soon.xxx

  • I have been awarded DLA indefinitely and not due ESA review until 2014....so I am probably worrying prematurely. Thanks.

  • have you looked at coeliac.org.uk/ ? That's the national association and they might have useful info re eating without costing a fortune. I have a friend who has Coleiac and she manages ok and sticks to cheap things like lentils and potatoes.

    But do keep pushing your rheumy to try out different drugs, and maybe ask about biologics.

    Polly

  • Thanks very much a brilliant website..........got a rheumy appointment next month and I am going have a really good chat with my doctor...

  • Hi - I agree with Polly that its quite possible to live well and cheaply on a gluten free diet. I don't suffer from Ceoliacs but I do get IBS and gallstone flares when I eat wheat so I now avoid it completely and have done for nearly 2 years. I have lost a lot if weight this way and also find that it helps with RA a lot so its not all bad. You can eat stuff like gluten free porridge with plenty of fruit, poultry, eggs, cheeses and all veges without getting into trouble and you will hopefully find it works much better re joint pain too. I hope you have a good consultation with your rheumy soon to discuss other drug options. Tilda

  • Thank you for this reply my doctor has also told me to avoid dairy as much as possible.so I think my shopping trips will take a lot longer until I get used to it all. Interesting though about how your diet has helped with your RA!

  • IF you have been medically diagnosed coealic by nhs professional you can get rice, pasta, biscuits and flour gluten free on prescription.( but if you pay it is £7.65 each item.., so get a prepayment. asda and morrisons do cheap gluten free products.

  • I avoid dairy too and drink calcium enriched soya milk with porridge etc. Its all much easier than it sounds when you get used to it I promise! I think in my case its the weightloss that has helped the RA, but I feel generally much better and more comfortable since becoming gluten free I admit and some say that its the best natural diet- led way to improve RA symptoms, so let's hope you find this to be the case as well. I also found that injecting MTX was much better for my liver and for reducing nausea as well as inflammation and someone here did suggest that's because it bypasses the gut and might indicate Coeliacs - too but I'm not sure about that.

    Tilda x

  • I have seen some items in Tesco that are Gluten free. I had to stop Dairy products for a while and tried goats milk. There are more products on the market that have Lactose in than you may think, so be careful and read the labels.

  • My mum has been Coeliac for nearly ten years now and she finds the Coeliac society to be a great help. They produce a sort of directory each year (mum calls it her 'bible') and it lists foods under different headings and different supermarkets that are ok to eat. Gluten free products are getting more and more available as the years go by so hopefully you won't have too much difficulty obtaining things but yes, in general, they are more expensive sadly. Incidentally, mum got a breadmaker just for her and it has a Gluten Free setting that she uses to make her own bread. She gets the flour from a health food shop. That said in recent months Warburtons have brought out some lovely gluten free products.

    Good luck you'll be fine once you get the hang of it :-)

    All the best

    Jo xx

  • I agree that the coeliac society is brilliant, and if you are low income I think you can get a reduced joining fee. Its not much anyway, and well worth it for all the information you get.

  • I have coeliac disease and I don't spend any more on my shopping than anyone else. It is possible to eat "naturally gluten free" by swapping bread and stuff for rice, potato etc, eg by having rice or potato salad with you lunch instead of sandwiches. Also, if you have been medically diagnosed then you will be eligible for gluten free food on prescription - this can include bread, gluten free flour, etc. Ask to see a dietician to get advice to start with. Also definitely join Coeliac UK as well - they have a load of really useful information, and you get their magazine which has a lot of hints and advice as well as recipes, and they will send you the gluten free food list so you know what supermarket foods are safe. They will also link you in with any local support groups and let you know about things like gluten free food events, etc.

    It might take a few months to figure out how to change your daily diet but actually I find eating gluten free very easy now. It also takes a while to work out which brands of things like baked beans, cooking sauces, etc are safe, which means a lot of label reading in the beginning, but once you have done that you get used to it pretty quickly.

    The big thing is that if you really stick to your GF diet, you will be absolutely amazed at how much better you start to feel within a few weeks.

    My big advice would be to NOT start by buying expensive gluten free substitutes in the beginning and just see how well you manage with the prescribed gluten free products and naturally gluten free food first.

  • Thank you for your reply, I was just in a panic when the doctor told me, but now after all the replies and words of advice I am now beginning to feel a lot better about my situation.

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