Team Celiac Runners
The Celiac Disease Center is doing groundbreaking and lifesaving work. My sister-in-law, Macy Sullivan, has told me that becoming a patient there has completely changed the game for her as she navigates life with celiac disease. “Diagnosed with celiac disease in 2005, I struggled for thirteen years to maintain a gluten-free diet while navigating the […]
The Celiac Disease Center is doing groundbreaking and lifesaving work. My sister-in-law, Macy Sullivan, has told me that becoming a patient there has completely changed the game for her as she navigates life with celiac disease.
“Diagnosed with celiac disease in 2005, I struggled for thirteen years to maintain a gluten-free diet while navigating the demands of a professional dance career, further complicated by international touring. My inability to avoid gluten (due to cross-contamination, restaurant errors, mislabeled packages, unlabeled inactive ingredients in prescriptions, etc.) had given rise to an overwhelming amount of anxiety, hopelessness, and guilt, and the misguided information I received from other New York doctors claiming to be knowledgeable about celiac disease was confusing and infuriating. I first contacted the Celiac Disease Center at Columbia University because I was tired of feeling helpless and wanted to get involved from a fundraising and awareness perspective. I became a patient of Dr. Peter Green’s in the process, and both my husband and I see how immensely this has positively impacted our lives in less than a year.
At the front line advancing research for the development of therapies, a potential cure, and gluten-sensing devices, the team at the Center offers the most up-to-date medical care and knowledge of resources in the country. More importantly, I’ve found Dr. Green’s honesty about what is not known to be refreshing and extremely insightful. On the flip side, the unfortunate truth is that some of my questions can’t be answered yet. If the FDA mandates less than 20ppm for a food product to be labeled ‘gluten-free’, why and how do other countries and certification programs have standards of 10ppm or 5ppm? How much would the difference between ingesting 15ppm and 25ppm affect my health? Why is my tTG IgA count slightly elevated even though I’m gluten-free? How does this affect my long-term health when I’m currently healthy by all other measures?
Celiac disease research has a long way to go but is significantly underfunded compared to less prevalent disease with lower mortality rates. Please show your support generously: for those who have celiac disease; for those with an autoimmune disease at risk of also developing celiac disease; for the families and friends who support someone with celiac disease; and for the years of research still to be done. We need your help. To better understand our fight, watch the Center’s 2018 Gala Film (https://www.youtube.com/watch?v=h73s4g5_fIA&t=586s). You might recognize someone!
Thank you, Pete, for making this possible.”