Marilyn’s Message November 2015

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Because the consequences can be so devastating and persistent, accidental exposure to gluten has always been a leading concern of the celiac disease community. I know from personal experience as the mother of a child with celiac disease that constant vigilance is often not enough. This is why Celiac Disease Foundation joined with other celiac disease advocacy organizations to lead the fight for tough FDA labeling requirements on gluten-free foods. With that victory now secured, it is time to take on hidden gluten in pharmaceutical products.

CDF is an enthusiastic supporter of Representatives Timothy Ryan (OH-13) and Nita Lowey’s (NY-17) “H.R. 3648: Gluten in Medicine Disclosure Act of 2015” which requires that the labels of drugs intended for human use contain a statement identifying the source of any ingredient constituting or derived from a grain or starch-containing ingredient. We are urging our community to contact their representatives and demand that this legislation be passed this year.

Earlier this year, we surveyed our audience for a presentation to the FDA. From that survey, we quantified that while adherence to a strict gluten-free diet has improved the overall quality of life for almost everyone in our community, 88% continue to show symptoms while on the diet. For most, these symptoms present after accidental exposure to gluten. For more than 60% of those, the symptoms – bloating, abdominal pain, fatigue, bone or joint pain, anxiety, depression – continue for more than three days, and often result in absence from work and school. The available research on the presence of gluten in prescription medications is scant and inconclusive. This does not mean that there isn’t a problem. Until Dr. Samantha Nazareth and her team from the Celiac Disease Center at Columbia University Medical Center researched the presence of gluten in probiotics, we weren’t aware of that problem.

The celiac disease community should be able to take both prescription and non-prescription medicines with as much confidence as possible that it will improve our quality of life. Without this legislation, that confidence is missing. For members of the celiac disease community, requiring identification of gluten in medications is simply good public health policy.

Want to learn more and help us get this important legislation passed? We have set up a special Legislative Action Center specifically for our community.

Thank you for your continued generous support.

To Our Health,

Sincerely,

Maril

Marilyn G. Geller, Chief Executive Officer

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