In Adults With Celiac Disease, Intestinal Damage Doesn't Always Heal

[David in Seattle]

Am J Gastroenterol 2010

By Will Boggs, MD

NEW YORK (Reuters Health) Mar 04 - When celiac disease is diagnosed in adulthood, mucosal damage might never completely resolve, even on a gluten-free diet, according to a February 9th online report in The American Journal of Gastroenterology.

"Celiac disease is a serious inflammatory condition that does not always heal," senior Dr. Joseph A. Murray from Mayo Clinic College of Medicine, Rochester, Minnesota told Reuters Health by email.

Dr. Murray and his colleagues analyzed mucosal recovery and all-cause mortality in 241 adults who had diagnostic and follow-up biopsies. All of the diagnostic biopsies showed some degree of intestinal villous atrophy, and nearly half the patients had total villous atrophy. The median age at diagnosis was 47 years, and all had been following - or attempting to follow -- a gluten-free diet since learning of their celiac disease.

Out of 165 patients with first follow-up biopsies within 2 years of diagnosis, only 58 (35%) had mucosal recovery. Thirty-eight additional patients (23%) eventually did have mucosal healing, as confirmed by later biopsies.

For the entire cohort, the actuarial rate of intestinal healing at 2 years was 34%. At 5 years, 66% of patients had mucosal recovery. The median time to confirmed recovery was approximately 3.8 years.

Most patients (82%) had at least some clinical response to the gluten-free diet, but clinical response was not related to mucosal recovery on the first follow-up biopsy. Among the 192 patients with a complete or partial clinical response, 119 (62%) had persistent mucosal damage. (A serologic response to the diet was associated with mucosal recovery, however.)

For 236 patients, the researchers had reports from dietitians regarding gluten-free compliance. Rates of good, moderate, and poor compliance were 75%, 20% and 4%, respectively, in patients with intestinal recovery, compared to 61%, 21% and 18%, respectively, in those with persistent damage.

Seventeen patients died during the first 10 years of follow-up. Eleven had at least one follow-up biopsy, and all but one still had mucosal damage in the last biopsy before death. Cancer was the most common cause of death in these patients.

The mortality rate was 87% lower with confirmed mucosal recovery versus persistent mucosal damage, although the relationship fell short of statistical significance (P=0.06).

"Systematic follow-up with intestinal biopsies may be advisable in patients diagnosed with celiac disease as adults," the investigators conclude.

Dr. Murray recommended intestinal biopsy "after 1 year of gluten-free diet" and, for patients with persistent mucosal damage even on the diet, "close surveillance, follow-up with diet review, and, if symptoms are present, look for refractory change."

[GFinDC]

Thanks for posting this info David. It would be nice to know how clean these people's diets were during the study. Very interesting information.

[Takala]

Before we assume the diagnosed ones were not being careful with their diets, we should think about the people with the opposite problem- they really were sick, they really responded to diet, and they really didn't get a diagnosis because they had negative blood tests and/or biopsies. Why does their mucosa look so nice ?

There could be, and probably is, something else going on.

I would hate for people newly diagnosed or suspecting they have the disease and are contemplating trying to get diagnosed, read this and think, oh well, what's the use, we're all doomed anyway.

These study groups also consist of people who were diagnosed, which are a tiny percentage of those who have gluten intolerance or celiac. Maybe the disease has to be full blown to get a diagnosis, in most cases. Or maybe they have undiagnosed lyme or some other tick borne diseases, or maybe they are taking drugs, like lots of NSAIDS, or drinking alcohol. There are so many variables.

[David in Seattle]

Or maybe they have undiagnosed lyme or some other tick borne diseases...

Can you elaborate on that?