As the parent of an adult child with celiac disease, I confess that I am consumed by two ever-present worries: 1) what can be done to help my child feel well consistently because strict adherence to the gluten-free diet is not the answer, and 2) what are the long-term health consequences of celiac disease? I imagine you share my concerns for yourself or your loved one.

Last week, one of our 2019 Young Investigator Award recipients, Dr. Benjamin Lebwohl, Director of Clinical Research at the Celiac Disease Center at Columbia University, co-authored a study published in JAMA (Journal of the American Medical Association) that showed a small, but statistically significant increase in mortality rates for patients with celiac disease. The study, funded in part by the Celiac Disease Foundation’s Young Investigator Award, was conducted using a large Swedish national health dataset. Dr. Lebwohl reflects on the study in this video.

This study is part of an overwhelming emergence of scientific evidence that celiac disease must be taken seriously by all concerned—patients, clinicians, researchers, the pharmaceutical industry, and our federal government—right now.

Let’s be absolutely clear; the gluten-free diet is not a cure. And for many patients, including my own child, the gluten-free diet alone isn’t an effective treatment.

Prior to the onset of this devastating COVID-19 pandemic, the Foundation, patients, and the celiac disease research community were effectively making our shared case to key Members of Congress and their staff, to NIH, and to the pharmaceutical industry. We were funding critical research and research tools. We were building momentum…making measurable progress. We simply cannot stop, or even pause, this critical work now. I am convinced that suspending our work now would be irresponsible to the millions who suffer from celiac disease, here and around the world.

I hope that you and your family are remaining safe and healthy during these troubled times. I thank you for your sustained commitment and support. Together, we can defeat this disease.


Marilyn G. Geller
Chief Executive