My brother came across this amazing website a few months ago and wondered if anyone could help. I was diagnosed with coeliac disease in 2009. This week I have a confirmed diagnosis of refractory celiac disease. I quote from consultants letter." Your endomysial and ttg antibodies are both negative confirming there is no signifcant gluten in your diet. Biopsies taken from the small bowel however do show signs of coeliac and therefore I think your diagnosis of refractory coeliac has been confirmed beyond doubt " I have been prescribed steroids and mercaptopurine (chemotherapy tablets) for the 3rd time in 2 years. They sort me out for while until it comes to reducing and then things go awry. A question of finding the right dose. I have done a bit of research but my brain is rather fuzzy at the moment.
Does anyone who is reading this have it, know anything about it, or can advise me in any way. I want to know why this happens and what the future( medication wise holds). I am in the north of scotland and the next visit to see the consultant is 6 weeks away. When this was first suspected she tried to find someone to refer me onto and could find no one with an interest in refractory coeliac disease apart from one consultant in the Cambridge area who I might have to track down. Thank you for reading this.