Earlier this month, however, at the Digestive Disease Week medical conferences in Chicago, two research teams presented results of studies showing that people with celiac disease who start the gluten-free diet as adults don’t always have complete healing of the lining of their small intestine, even after they’ve been gluten-free for a long time.
In one presentation, Dr. Alberto Rubio-Tapia and colleagues from the Mayo Clinic in Rochester, Minnesota described their study of patients whose celiac disease had been diagnosed (and confirmed with a biopsy) during adulthood and who later had additional biopsies to determine whether or not their intestines had healed.
-- Of 141 adults who had been gluten-free for less than 2 years, only 79 (56%) had healed intestines.
-- Of 65 adults who’d been gluten free for 2 to 5 years, only 37 (57%) had healed intestines.
-- Of 27 adults whose intestines were examined more than 5 years after they became gluten-free, only 14 (52%) had intestinal healing.
Lack of healing was slightly more common in patients in older age groups and much more common in those who were not diagnosed until the villi that line the small intestine had completely flattened out (a condition known as “total villous atrophy”).
In a separate presentation, Dr. Mohammad Azam from Connolly Hospital Dublin & Wexford General Hospital in Ireland also reported on rates of intestinal healing in people with celiac disease diagnosed in adulthood. As in the study from the Mayo Clinic, the Irish patients had follow-up biopsies to check the healing status of their small intestines. At 2 to 3 years after starting the gluten-free diet, only 66 of 124 patients (53%) had healed intestines. In this study, however, Dr. Azam found that almost two thirds of the patients whose intestines hadn’t healed “had poor or very poor dietary compliance.” In his adult patients, he said, lack of long-term compliance to a strict gluten-free diet was the main reason for poorly controlled disease.
Dr. Rubio-Tapia, who headed the Mayo Clinic study, told me, “In contrast with the study from Ireland, most of our patients had good adherence to the gluten-free diet.” But as his study showed, adherence “does not guarantee mucosal recovery" in all adults with celiac disease. (The lining of the small intestine is often referred to as “the mucosa,” and another term for “healing of the intestinal lining” is “mucosal recovery.”)
“I am not sure if [these patients] will never completely recover or if mucosal recovery may be obtainable but requires longer time,” Dr. Rubio-Tapia said. “In general, our patients are doing a good job with adherence to the gluten-free diet but it is possible that [hidden] gluten sources (difficult to identify without standard labeling for gluten-free foods) play a significant role.” A lack of public awareness and education about celiac disease, as well as a long time of gluten exposure in patients not diagnosed until adulthood may be factors too, he added, along with other yet unknown factors, perhaps related to genetics or patient age.
Dr. Rubio-Tapia points out that the adults in his study who did not have mucosal recovery had an increased risk of celiac disease complications. Therefore, he says, in people who were diagnosed with celiac disease in adulthood, it might be important to confirm mucosal recovery with a biopsy after the individual has been on the gluten-free diet for awhile. Just having your symptoms go away and having normal blood tests does not necessarily mean your intestine has completely healed.