As the mother of a child with celiac disease, I understand firsthand the apprehensions and concerns that come with your child receiving that diagnosis. For most of you, the ordeal of getting a correct diagnosis to explain your child’s symptoms has been exhausting. On top of that, you have been told that the only treatment for celiac disease is strict adherence to a gluten-free diet. You’ve done your research, purged your cabinets, and explained the new diet to your young and unhappy patient, family, and friends. But, there is one huge area of your child’s life over which you still have little control…SCHOOL. Yes, you carefully pack your child’s lunches with strict instructions to not swap food with other students, but you are well aware that there are so many opportunities for gluten exposure, and bullying, in academic environments – which can leave your child suffering for days, weeks, months, and years.
Children with celiac disease are entitled to accommodations in schools that accept federal funds through Section 504 of the Rehabilitation Act of 1973. A 504 Plan is the method of detailing what these accommodations are. Until now, there has been no definitive guidance for schools and parents or caregivers on what is medically and psychologically necessary for a child with celiac disease to succeed. For most of us, it has been an ongoing fight to keep our children safe at school.
This is precisely why the Celiac Disease Foundation and Children’s National have collaborated with leading experts from across multiple disciplines – health, wellness, and education – to create the Voluntary Recommendations for Managing Celiac Disease in Learning Environments. After a comprehensive investigative process, we are now ready to begin distributing this guide and companion video training modules to schools across the nation. We are also making it available to the celiac disease patient community, so you know what you should, and what you should not, ask for.
Because you are a valued stakeholder, I wanted to share the guide with you first. Please take a moment to read through it. If you have any feedback you would like to share, please email me. If you know someone who would benefit from reading the guide, by all means share it with them or direct them to celiac.org/schoolmanagementplan/ to download their copy. Due to the pandemic, the video training modules have been delayed, but you may view the introductory video.
Together, we are educating our schools and communities. Together, we will defeat this disease.
Wishing you good health,
Marilyn Geller
Chief Executive