NIH conference offers suggestions on treatment for celiac disease
Millions of Americans suffer from celiac disease, a disorder that makes them intolerant to ingested gluten. There is no medical cure, except for strict adherence to a gluten-free diet that forces persons with the disease to fastidiously monitor the ingredients of everything they eat.
Now some patients and advocates are warning that Rx drugs can also be a dangerous source of gluten that most pharmacists don't know about.
Celiac patients avoid all forms of gluten, which is found in wheat, rye, barley, and sometimes oats. Failing to do so can lead to troubling bouts of diarrhea, malabsorption, weight loss, and sometimes more severe problems. An estimated 1% of the U.S. population may have celiac disease, though many are undiagnosed, according to the findings of a recent National Institutes of Health consensus development panel.
According to several patients, even the most experienced celiacs can run into trouble when they need drugs for other conditions, since Rx tablets may contain gluten in their list of inactive ingredients. "When you're diagnosed, nobody says, 'Hey! Check your medicine,' " said Alice Bast, executive director of the National Foundation for Celiac Awareness. Part of the problem, she said, is that few pharmacists are aware of the active ingredient content of most drugs. "Doctors and pharmacists never think of them."
At least one pharmacist has. Sister Jeanne Patricia Crowe, Pharm.D., a pharmacist at the Camilla Hall Pharmacy in Immaculata, Pa., surveyed more than 100 drug manufacturers in 2001 to see how many could guarantee gluten-free products. The answer, according to the study published in the American Journal of Health-System Pharmacy, was 5%.
A handful of other companies said that they believed their products to be gluten-free but would not guarantee it. Crowe said in an interview that most companies have moved away from wheat-based starches to corn or potato sources for their inactive ingredients. But not all have, and almost none can say for sure how separate ingredient vendors produce starches. "Because vendors of starches won't give them a guarantee, they cannot give a guarantee to patients," she said.
The uncertainty led Crowe and some colleagues to develop a list of common inactive ingredients likely to contain gluten as well as excipients that are likely to be gluten-free. The list especially warns patients to be on the lookout when switching to generic medications, as many generic companies do not manufacture the drugs sold under their label and, therefore, may not be the final authority on the drug's makeup. "Until all companies declare that their products are gluten-free, and free of gluten contamination from vendors, patients still have to check," she advised.
Pharmacists filling an Rx for a celiac patient can call the medical information number listed for the drug in the Physician's Desk Reference to ask specifically about the source of individual ingredients, Crowe suggested. Pharmacists can request Crowe's list by e-mailing her at firstname.lastname@example.org.
Pharmacists can also try a 1998 book entitled Celiac Sprue: A Guide Through the Medicine Cabinet, written by Marcia Milazzo, a former pharmacy owner. She personally surveyed hundreds of manufacturers to find out which of their products may contain gluten. The book is available for $39 at www.celiacmeds.com.
Hal de Bruyn, a 79-year-old retired financial executive, said that prolonged exposure to gluten in daily blood pressure medication caused him to lose 15 inches of his small intestine in 1994. He complained that Congress has not forced drug companies to put patients or pharmacists on notice when inactive ingredients may contain gluten. "We are constantly on the alert. You can't let your guard down," he said.
Todd Zwillich. Rx drugs: A hidden danger for celiac sufferers?
Aug. 9, 2004;148:14.