Currently, the only sure treatment strategy for celiac disease is a strict gluten-free diet. However, as I have recently learned, an estimated 10-19% will continue to have intestinal damage even after a year of eating strictly gluten free. This is called nonresponsive celiac disease.
In most cases, this means the diet isn’t being followed strictly enough. For others, the poor response could be related to other conditions, such as irritable bowel syndrome. And in a very small number of cases, the cause is refractory celiac disease.
Refractory celiac disease is a very rare complication of celiac disease with an increased risk of certain types of cancer. There are two types of refractory celiac, Type I and Type II. Type I is more common and in general, more easily treated than Type II. Both are typically treated with steroids and immunosuppressants in the hope of putting celiac disease into remission.
Unfortunately, I find myself in the frustrating space of what appears to be nonresponse celiac disease. My bloodwork remains abnormally elevated 18 months post-diagnosis and a dietitian has confirmed there is no gluten sneaking in. I had a follow-up endoscopy to compare to the one at diagnosis and am still waiting on results. If my small intestine has healed, it’s possible another autoimmune disease is at work or simply that my path to healing is extremely slow. The endoscopy will either rule out refractory celiac disease or bump it front and center.
I would love to hear about your experience. How long did it take for you to get a clean bill of health after diagnosis? There is so much to consider and very little information to be found online.
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