Marilyn’s Message October 2016

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This month, Celiac Disease Foundation launched the Pediatric and Adult Celiac Disease Follow-up Checklists. Based upon recommendations from the world’s leading medical experts, the Follow-Up Checklists specify best practices in post-diagnosis celiac disease management to assure optimal patient care.

We also debuted a Pediatric 7-Day Gluten-Free Meal Plan with tasty, kid-friendly recipes to help parents of newly diagnosed children, as well as those of us who continue to struggle to provide nutritious gluten-free meals for our picky eaters. The Pediatric Meal Plan links to our new, interactive Recipe Hub, which allows you to browse hundreds of gluten-free recipes for every occasion. These tools join the Back-to-School and 504 Plan Guide that we introduced last month.

As the mother of a son with celiac disease, who is now an adult, I am driven, together with our staff, to develop the resources that improve the lives of all patients and caregivers. It took nearly 15 years for Henry to be diagnosed. How much sooner could he have received the proper diagnosis if there had been a Symptoms Checklist and Healthcare Practitioner Directory? When Henry was diagnosed, his gastroenterologist told me to go to a bookstore and find information on the gluten-free diet. How much easier would it have been, and how much more quickly would Henry and our family have adjusted to living gluten-free, if there had been a Pediatric 7-Day Gluten-Free Meal Plan, a Back-to-School and 504 Plan Guide to tell us how to fight for his right to safe accommodations in school, and a Gluten-Free Marketplace where we could find safe gluten-free foods, including ingredient lists and nutrition facts, and create our own shopping lists, or order through Amazon?

How much more confident would we have been as parents, and Henry as an adult now,  that he was receiving the proper follow-up care to assure a positive outcome for his long-term health? Until now, published guidelines did not exist stating that patients should be tested ANNUALLY for thyroid disease and vitamin D deficiency. In Henry’s freshman year of college, he suffered from chronic fatigue, despite his strict adherence to the gluten-free diet. We, of course, thought it was due to his new lifestyle – lack of sleep and gluten-contaminated dorm food. Fortunately, my husband, an endocrinologist, thought to test him for both thyroid disease and vitamin D deficiency. Henry has both. How many children and adults continue to suffer, certain that it is celiac disease, and cross-contact with gluten, that is responsible for their symptoms, when it may actually be another condition for which there is treatment? Henry will soon undergo a bone density scan based on the Follow-Up recommendations, to rule out osteoporosis. He will also be re-vaccinated for hepatitis B. Together, with his gastroenterologist, he will decide if he needs a repeat biopsy to determine if his gut is fully healed.

Nearly one million people have used the Symptoms Checklist, and 100,000 have used the Directory since their debut in 2014. More than half a million people have downloaded the 7-Day Gluten-Free Meal Plan, and eight million people have used the Marketplace since its launch last year. These numbers are encouraging, and they assure us that we are delivering what you need to be diagnosed and treated. We hope that you will use the Follow-Up Checklists to get the care that you and your loved ones deserve.

If you have ideas for new tools you think are important to add to our toolkit, I would love to hear from you. Please contact me at marilyn.geller@celiac.org or 818-716-1513 x102.

To Our Health,

Marilyn G. Geller
Chief Executive Officer

P.S. If you have benefited from our resources at celiac.org, please consider paying it forward by entering your or your child’s data into the iCureCeliac™ registry. Help us help researchers to develop treatments, and find a cure.

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