Refractory celiac disease or RCD is rarely diagnosed. Today’s study demonstrates why RCD is so rare. The study demonstrates that gluten exposure is often the culprit in ongoing celiac disease symptoms.
Refractory Celiac Disease or RCD is where the body does not heal after 12 months on a gluten-free diet. RCD affects less than 10% of celiac patients. Ongoing symptoms and weight loss are the most common complaints. Doctors have to tease out whether a patient’s ongoing symptoms are due to ongoing gluten exposure or RCD.
RCD is difficult to diagnose because doctors don’t have great tools to help them. The only tool to diagnose RCD is the endoscopy and biopsy. Celiac blood tests are not sensitive enough to detect low levels of gluten exposure. Celiac patients always believe they are strictly adhering to a gluten-free diet.
I even talked to someone that claimed to be a registered dietician that was having a determatitis herpetiformis flare. She said she hadn’t eaten anything with gluten. I suggested that she was either eating gluten or it wasn’t a DH flare. She didn’t like those answers because she was certain of both!
Researchers in Seville, Spain evaluated four RCD patients. They were trying to determine if the patients were truly RCD patients or had ongoing gluten exposure.
Each patient met the criteria for a RCD diagnosis with ongoing villous damage after 12 months on a gluten free diet. The study required them to keep a food log and take a gluten detecting urine test. The urine tests were unscheduled. Kind of like a pop quiz for gluten exposure.
Three out of four of the patients consistently had positive gluten detection tests. These patients were reclassified. Their ongoing symptoms are considered “gluten exposure” rather than RCD. They received a referral to a registered dietician for help with the gluten-free diet. Confirming the RCD diagnosis, the fourth patient never had a positive urine gluten detection test.
I always think RCD is underdiagnosed. Too many people are experiencing ongoing symptoms. But according to this, very, very small study, their symptoms could be related to ongoing gluten exposure.
This study further solidifies my argument that a gluten-free diet is almost impossible to accomplish in our modern world. It can be done but it is so cumbersome and unwieldy that it is virtually impossible.
Foods with questionable or unclear food labels are part of the problem. Reliance on convenience foods is another problem. Lack of understanding at restaurants regarding cross-contamination. All of these lead to celiac disease being a challenging disease to manage.
So, if you are struggling with ongoing symptoms, try a whole foods diet for a while and see how it goes!