type 1 refractory coeliac disease

[Dona]

is there anyone else with this, finding it very hard to find anyone

[carona]

? Going to show my ignorance here, not heard of this before. So sorry, Dona I can't add anything for you. Take care. Carona

[meanioni]

Refractory coeliac disease is when a coeliac does not respond to a gluten free diet after 6-12 months - malabsorption or continued damaged villi in the intestines. As I understand it:

Type 1 is treatable to a degree through diet and support using medicines and characterised by normal antibodies in gut tissue.

Type 2 is more serious and is less easily treatable (and can lead to other gut diseases) and characterised by abnormal antibodies in gut tissue.

I don't have either, but just thought it might help to explain what it is.

[Hidden in reply to meanioni]

After 2+ years apparently started with IBS in 2010, no tests done for it apart from last year a failed painful colonoscopy. Have now cut down on dairy products to see if helps, taking soya milk for time being. Requested rabeprazole in desperation when mebeverine and peppermint failed and made situation worse. Managing pretty well now considering the situation before. Did request another endoscopy in 2010 but gp not interested.

[FionaGFG Administrator]

Hi have a trawl on our tag directory we have posted up about this before & would also be keen to discover other members in the group and how they have been treated & diagnosed. So far we've found very few people with RFCD but we know you're out there!