Gluten Free Guerrillas

Does anyone know of a specialist in Refractory Coeliac Disease in the UK?

I've recently been diagnosed with RCD as a result of my villi not recovering after a strict GFD for 2 years. I can't argue with the histology but I have now fully regained all my weight, have no symptoms and my blood tests for vitamins etc are ok again. Would like to find someone who really understands RCD for another opinion before I consider the steriod / immunosuppressant option proposed by my Consultant. Thanks Nicky

3 Replies

Never heard of it.,


hi I have type 1 RCD, was diagnosed about 18 mths , i I have total villi atrophy, it has not recovered even with treatment. I see a Professor David Sanders who is based at the Royal Hallamshire Hospital in Sheffield, He is the the top person to see for this condition, he has studied the condition for 15 years, he also states that if he is lucky he see 1 a year with this condition. I have tried steriods but didnt work, I am now on a chemo drug called mercapturprine, it will not cure the condition but keeps things at bay, at present ive been told by the professor, that if i was to stop the medication i would be seriously ill, I have to have my bloods done every 3/4 weeks as it affects the white blood cell count but it comes with the same side effects of chemo, tho u dont lose your hair, not allowed in the sun or use sunbeds and at present am going on holiday, and no one will insure me for the condition as its not on the computer system, really stupid and also my condition is quiet severe at present where treatment has failed to work. People have not heard of this condition as its so rare and there no current tests available


Hi Dona, thanks so much for getting back to me, sorry to hear you are having such a difficult time with it. I will check into Prof Sanders and see if I can get another opinion. My diagnosis doesn't seem to make sense as I am really well and all my bloods are good - just the villous atrophy hasn't improved on the GFD.

Hope things pick up for you, take care, Nicky


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