by Avery Leppo
Over nine years ago, I was diagnosed with celiac disease. I was in second grade and had been suffering from severe headaches, abdominal pain, fatigue, and forceful vomiting. These symptoms caused me to miss school often and retreat socially. Doctors repeatedly dismissed it all as anxiety. After blood work followed by an endoscopy ultimately confirmed that I had celiac, my parents and I met with a dietician and quickly transformed our home into a safe, 100% gluten-free space. Within weeks of altering my diet, I physically felt much better.
Receiving a lifelong autoimmune diagnosis at seven years old was challenging and scary. I longed to have a confidante who could help me adjust to my new reality. This is what inspired me to begin Celiac Chat, a mentorship program for kids and teens newly diagnosed with celiac. With support from the Celiac Disease Center at Columbia University, we provide a virtual safe space to discuss the physical, mental, and social challenges that often accompany living with celiac. By offering resources, and support, and sharing our own celiac stories, we try to ease their transition to a lifelong gluten-free diet.
Our hybrid program is based in New York City, but our mentors and mentees mostly connect virtually so they can be located anywhere. We chat about whatever is on our mentees’ minds such as our favorite gluten-free products, ways to order more safely in restaurants or to navigate an upcoming social event. We also emphasize the importance of creating allies by educating our friends and family about celiac, the gluten-free diet, and the risks of cross-contamination. Above all, we help them understand that they are not alone. We provide a glimpse of hope and humor and serve as examples of how they can thrive and live a fulfilling life despite celiac, and also go on to help others.
Celiac Chat just launched in September, but over the past five months, we have seen tremendous interest. We are collaborating with over 20 organizations, restaurants, and influencers, have a solid base of email subscribers, and are working hard to reach more parents to increase our mentee numbers. During the annual Celiac Disease Foundation Turkey Trot, team Celiac Chat raised over $600 to help find a cure for celiac disease. Dr. Jacqueline Jossen at The Celiac Disease Center at Columbia University has been very supportive by helping spread the word about Celiac Chat to the community and her patients!
We are currently reviewing mentor applications. Our mentors are interviewed and given guidelines to follow so they are prepared to meet their mentees at any stage in the process and follow their lead about how quickly to move from there. We also continue to improve our website by expanding our resources for both mentors and mentees.
Recently, I was on a call with a nine-year-old girl who was diagnosed with celiac a year ago. Before I could ask her anything, she said, “How’s celiac going for you?” I instantly started beaming. Within a couple of sessions, she had not only gained confidence in managing celiac but had found joy in being part of the Celiac Chat community.
I am determined to be a resource and support newly diagnosed children and teens so they feel less alone than I did. I find these connections tremendously rewarding and truly inspirational and hope my mentees and fellow mentors feel the same way. Please check out celiacchat.org to learn more about the program, and if you have any questions, email info@celiacchat.org!
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This GFF Student Advocate Guest Blog Post was written by Avery Leppo, a senior at The Dalton School in NYC. Avery is a drummer and guitarist.. She plays softball and loves nature, traveling, working with children, and rooting for the Red Sox!
Read more about high school students making a difference:
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Gluten Free Friends works to raise awareness about the importance of safe, inclusive college dining. We encourage food allergy and celiac advocacy and welcome high school and college student contributors to our blog.
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