What is Refractury coeliac disease please, anyone?

[Mari65]

[FionaGFG Administrator]

Refractory Coeliac disease is very rare and is the term used for patients who not respond well on a gf diet. Sometimes the damage is so severe that patients villi never heal/ operate fully. Guidance in the UK is that

'In patients with persisting symptoms they should be investigated carefully with particular reference to ensuring that refractory coeliac disease is excluded.'

BSG

Often there are varying stages of refractory coeliac disease and drugs can be used to help the immune system.

"Coeliac disease may be regarded as refractory disease (RCD) when symptoms persist or recur despite strict adherence to a gluten-free diet. RCD may be subdivided into types I and II with a phenotypically normal and aberrant intraepithelial T-cell population, respectively. RCD I seems to respond well to azathioprine/prednisone therapy. RCD II is usually resistant to any known therapy and transition into enteropathy-associated T-cell lymphoma (EATL) is common."

gut.bmj.com/content/56/10/1373

Other links:

mayoclinic.com/health/celia...

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Hi Mari65

Fiona has given you an excellant answer to your question but I have one for you. If you are not offended can you advise me as to the age you were considered to be coeliac and the now. ie has it been 2,3,4 years or more?

roscoe

[Mari65]

Hi Roscoe, I was finally tested in my early 30's after being ill for what at that point seemed to be my entire life. The consideration is that I was a coeliac from birth, I am now 46 & can honestly say even though I stick to a very strict G/F diet, I don't for the majority of the time feel any better for it. Hope this answers your question. Marion

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Hi Marion.

I was diagnosed at age 56 and it took me a full 5 years to be able to say my villi had improved after being strict coeliac. They thought I was refractory type 1 for 2 years. Fortunately my diagnosis is good. Still coeliac, not feeling a lot better but far more healthy.

Hope this helps.