Gluten Free Diet Not Working? Refractory Celiac Disease

So what happens if you have Celiac Disease but the Gluten Free Diet does not improve your condition? You could have Refractory Celiac Disease which is a very serious and rare condition that occurs when going off Gluten does not stop symptoms or intestinal damage in the Celiac patient.

According to a recent article from Celiac.com, researchers are now proposing a new Staging model (similar to cancer stages) for Refractory Celiac patients which provides greater accuracy of prognosis. The new model looks at various prognostic factors and places patients into one of three stages at the time of diagnosis. Keep reading if you want the bad news for Refractory Celiac Disease (RCD).

• Stage One - Patients' 5-year survival rates of between 93% and 100%.
• Stage Two - Patients' 5-year survival rates of between 80% and 65%.
• Stage Three - Patients' 5-year cumulative survival rates of between 25% and 0%.

The study to drive out the new Staging scale followed 57 RCD patients over the course of a 5 year period. Fifteen of the 57 patients died within 2 years of being diagnosed with RCD. Most deaths were a result of refractory celiac disease, or to enteropathy-associated T-cell lymphoma (EATL). I think it is safe to say that the longer you have RCD the higher you will move through the Stages until your eventual death.

For those of you out there with Celiac but not with RCD, here is yet another warning to strictly follow your Gluten Free Diet for life. To me, RCD is what life would be like for the Celiac patient who decided to not follow a Gluten Free Diet. Either would result in the same high rate of mortality.