Did you know that some people with celiac disease (the condition that makes people unable to digest the gluten found naturally in wheat, rye and barley) are unable to control their symptoms even with faithful adherence to a gluten-free diet?

The reason why that’s so is a puzzle doctors and researchers are working to solve. While they’re not ruling out the possibility that some or even all of these patients are unknowingly consuming gluten, even though they think they are adhering to a strict gluten-free diet, many doctors believe that another factor is at work as well. It appears that the damage done to the digestive systems of these patients doesn’t heal when they stop consuming gluten—unlike most people with celiac disease, these unlucky folks continue to experience symptoms, and ultimately a higher risk for other serious illnesses, including cancer.

This condition is called refractory celiac disease. The good news is that this problem is rare, affecting only about 1% of people with celiac disease. Not only that, but inroads are being made in treating this unusual condition. Specifically, researchers have identified a new class of drugs to treat refractory celiac disease that is showing great promise—I will tell you all about it in a minute, but let’s first talk about how this happens, because few people are aware that this problem even exists.

BLAME THE PATIENT?

When patients with celiac disease continue to suffer their miserable symptoms (including frequent bouts of diarrhea and flatulence) even after changing their diets, doctors tend to assume that they are still ingesting gluten from somewhere. As Daniel Leffler, MD, MS, founding member of the Celiac Center at Beth Israel Deaconess Medical Center, Boston, and coauthor of the book Real Life with Celiac Disease, told me, sticking to the diet can be “really, really hard.” That’s not to say that these folks are giving in to temptation and eating pastries, pasta and bread, but rather because gluten lurks in many surprising foods including, as I mentioned above, some foods that are labeled to be free from gluten.

It’s a serious issue that goes far beyond the discomfort and inconvenience of the symptoms—refractory celiac disease is associated with lymphoma and any number of other potentially deadly illnesses. Since the condition remains unusual, there’s still much to be learned about diagnosing and treating this problem, Dr. Leffler told me.

Treatment options focus on controlling inflammation:

• Corticosteroids, which suppress the inflammatory response, have been the first-line treatment, but they have numerous troubling side effects, including dependency, immune suppression and bone thinning.

• A small study of refractory celiac patients at the University of Virginia in Charlottesville reports that thiopurines (immunosupressants) may be effective. Dr. Leffler told me that he agrees that thiopurines are useful and that they let patients avoid some of the problems associated with steroids, but they too have potential side effects including the risks to the rest of your health when your immune system is suppressed, as well as liver and pancreatic damage, so patients taking them require close monitoring.

• Now there’s yet another possibility—a drug called mesalamine (similar to aspirin), which controls inflammation and was developed for inflammatory bowel disease and Crohn’s disease. This seems to be safe for refractory celiac, but the medication takes longer to work than the others and Dr. Leffler says there is still much to be learned about mesalamine for refractory treatment.

NATURAL TREATMENTS

I asked Daily Health News contributing medical editor Andrew L. Rubman, ND, about this problem, and he told me that some physicians have had success treating patients with refractory celiac disease with willow bark extract, which contains salicin, the compound upon which aspirin and mesalamine are based.

Individuals who have, or suspect that they have, refractory celiac disease should seek out an experienced celiac team whenever possible, according to Dr. Leffler. A list of celiac centers can be found at the Beth Israel Deaconess Medical Center Celiac Center. And meanwhile, you can be sure that I’ll continue to follow this story—it’s an important one.