Week 3 of the Celiac Series is a special one for all of you! Today, I am introducing Hallie and Rayna Katzman, Celiac twins and authors of the newly published book, Everyone’s Got Something: My First Year with Celiac Disease. Along with their mom, Dr. Lori Katzman, the twins have created a “raw, relatable, empowering, and uplifting” way to reach preteens who have been diagnosed with Celiac Disease. On top of that, they are headed to college this fall and will be competing on their Division 3 tennis team together!
Not only did Rayna and Hallie write this book so that the “readers [felt] more understood, less alone and more confident in managing this life change”, but they also co-founded a Food Sensitivities Awareness Club at their high school and are Student Ambassadors for the Celiac Disease Foundation; they are even donating some of the proceeds from their book sales back to the Celiac Disease Foundation. I’m giving these girls a virtual round of applause right now – aren’t you? They have made such a huge difference in such a short amount of time after being diagnosed.
Both twins were diagnosed five years ago in 2014. They said, “We are identical twins, and even though we have the same genetic makeup, we learned that we both didn’t need to have [Celiac Disease]. We were told the concordance rate of Celiac Disease in identical twins is about 80%.” Being diagnosed at age 13, they searched for resources but could only find “options for adults [their mother read Dr. Peter Green’s book from cover to cover] and a variety of picture book options for younger elementary school children.”
Hallie and Rayna were always avid readers, and they realized they could fill the void and help future preteens who were in their position post-diagnosis. “[Their] book is based on entirely real experiences but told from the perspective of a fictional character named Lexi, who is 13 years old. The book is written in journal format and chronicles Lexi’s experiences, from the diagnosis, to going to doctor appointments and handling the many firsts like telling her friends, going to a party, eating out, having a nutritionist and understanding what is okay and what is not okay for her to eat. Lexi realizes that it is not just an adjustment for her, but for her whole family and that having support is key. Lexi also realizes that while Celiac Disease is part of her, it doesn’t define who she is.” They also discuss the testing process and include definitions of the “big” words in the back of their book. They “wanted to help kids understand that though the diagnosis can be intimidating and overwhelming, they can and will get through it and are definitely not alone.”
The twins are wise beyond their years. Thanks to their mom, a psychologist, they grasped the idea early on in their diagnosis that “the change in food wasn’t only about the food, there were still a lot of feelings involved. [They] were grateful for knowing why [they] weren’t growing, but the transition to a gluten-free lifestyle automatically made [them] different than most of [their] peers. Food is everywhere and involved in everything, so what started as a way to process these life changes for [them] quickly became an opportunity to help other kids and families in a similar situation.”
Helping others is clearly a theme in the Katzmans’ lives, and I for one believe many are benefitting from their work. Not only are they considering a sequel, but they are also spending their summer before college spreading awareness for Celiac Disease. They stated, “Since the book has been published, we have presented at the Kogan Celiac Support group, hosted a table at the Gluten Free Expo in Connecticut and will be attending the GF Expo in Pennsylvania this month. We will also be speaking at the Generation GF Northern New Jersey meeting in June. We’re so grateful for these opportunities and we’re looking forward to getting the word out about the book and connecting with more people in the Celiac community!”
Check out their book here on Amazon. Paperback copies are also available at Barnes and Noble, and their Amazon Kindle version released today! However, they suggest buying the physical book because they have a “start your own journal” section where you can join Lexi on her journey.
Words of Wisdom:
“We aren’t 100% sure what lies ahead while we are in college, but we know we will continue to advocate, support and educate others.”
Rayna and Hallie’s story isn’t over yet…stay tuned for another Celiac Series appearance during Celiac Awareness Month!