So where do people with celiac disease go from here? How can they trust what they’re ingesting, sometimes daily, to treat another condition?
Plogsted’s advice to consumers who must avoid gluten is to watch for that word “starch” as an excipient on a medicine, as it’s the only likely culprit to contain gluten. If the word is there, try to drill down through the manufacturer as to what kind of starch. If it’s wheat, you’ll need to avoid.
On the legislative front, celiac groups showed support for Congressional representatives Tim Ryan and Nita Lowey when, in the fall of 2015, they introduced the Gluten in Medicine Identification Act. It would require drugs for humans to have labels that clearly disclose ingredients that contain gluten.
“People need to be able to trust that the medicine they are prescribed will improve their health, not worsen it,” Ryan said. “Celiac disease is a growing issue in our country and those suffering have the right to know if their medicine contains ingredients that are adverse to their health.”
As well, Nancy Ginter, Beyond Celiac’s director of administration, says there is a need for more research. The organization’s study, which got funding from the FDA, was only meant to determine if there was any credibility to anecdotal reports from patients and health-care professionals that prescription and over-the-counter drugs do cause problems for those on a medically necessary gluten-free diet.
And they do, perhaps mostly related to the avoidance of helpful drugs because of the lack of transparency. The researchers found that when the gluten content of a medication is unknown, the celiac patient’s health-care team must speculate about the cause of an adverse event, and in an attempt to find solutions, may unnecessarily switch to a less effective medication regimen. Individual consumers may also discontinue the use of a needed non-prescription medication because they suspect the presence of gluten.
As with food products, those following this issue say that a safe threshold for trace amounts of gluten in medications needs to be established, one that factors in the need to take pills on a recurring basis and employs a consistent testing methodology.
“Even if the quantity of gluten and the actual risk are small, patients can have substantial fear or anxiety. This can, and does, alter behavior and lead to them not taking the medication at all. This is unacceptable,” Ginter says. “It’s a problem we can solve. Our goal is to have gluten labels on both prescription and over the counter drugs.”
For more information about gluten in medication see: