Twin sisters, Hallie and Rayna Katzman, and their mom, psychologist Lori Katzman, have written a new book for the celiac community. “Everyone’s Got Something: My First Year with Celiac Disease” tells a fictionalized version of the twins’ celiac diagnosis at age thirteen. The friendly diary style format, based on their own journal entries, is well suited to young readers, parents, and anyone looking to support someone with celiac disease.
Hallie and Rayna will graduate from high school in a few weeks, and are heading off to play tennis for Union College in the fall. The Katzman Family joined Gluten Free Friends when the twins were first diagnosed five years ago. They were kind enough to answer some questions about their book and their celiac journey.
What made you guys want to write this book?
Hallie and Rayna: We wrote the book originally as a way to get our thoughts and feelings out and to document our journey after our diagnosis. We’re both avid readers and when we were diagnosed we wanted to find a book that we could relate to. There were many amazing options, but most were targeted for young children and others were the scientific, more detail-oriented books targeting adults. As freshly diagnosed 13 year olds, we didn’t find many resources appropriate for our age group. As time went on we realized that the ideas and experiences we were compiling could be made into a very useful resource that we didn’t have when we were diagnosed!
How has the response been?
Rayna: The amount of people that have reached out to tell us that they had been helped by our book or learned something has been truly humbling. It’s an irreplaceable feeling to know that we’re making a difference. One mother wrote to us saying that her child “got so much out of it, really hung on every word and started answering the questions at the back of the book.” She also called it “a wonderful resource” which has been really reaffirming.
Hallie: Yes, it’s amazing to know that people feel like they’re able to better understand and help their loved ones with our book!
How did support groups help when you were first diagnosed and ongoing?
Hallie: It was so helpful to find people who were experienced and could help guide us and relate to the struggles and victories of living with celiac. It was through the Kogan Celiac Center support group that we actually met our amazing nutritionist Nicole who played a key role in our adjustment to living with celiac.
Rayna: The people we met in the celiac community early on in our diagnosis continue to be our close friends to this day. Without them, we probably wouldn’t have had the motivation or inspiration to write our book in the first place. I feel a sense of pride and that feeling of paying it forward when we can help someone else early on in their adjustment. Another mom wrote to us “Honestly the girls’ book has been so helpful! It’s such a great resource in an area where there is so much loneliness for these kids.”
Tell us about the Food Sensitivities Awareness Club (FSA) you started at your high school. Do you recommend other students with food restrictions start a club?
Hallie and Rayna: We started FSA with our two older friends, one of which has celiac. It was an awesome way to build a community within our school for people with food sensitivities and others that want to support them. We met with a dietitian, participated in the Food Allergy Research and Education walk, promoted the Teal Pumpkin Project and collected allergy-friendly non-perishable food for the Community Food Bank in Hillside NJ. We also promoted awareness and shared information through our FSA Facebook page All schools have different processes for creating clubs, but if it’s possible to create a community through a club at your school, it’s so worth it! Finding a group of people who are going through the same thing creates an irreplaceable support system for you and them!
How exciting that you both plan to play tennis for Union College in the fall. What research did you do on their food service before heading there?
Hallie: We did a lot of research! The best strategy for us was being able to be on campus, be in the dining halls and talk to staff to see what it might be like if we were to go there. We did this after the regular campus tour and on re-visits. Union College has an extremely understanding dining staff!
Rayna: Hallie and I were looking at colleges within driving distance. If you can’t make it to a college campus, I would recommend calling the school and talking to the dining staff on the phone to hear how knowledgeable they sound. Websites can be misleading. We came across many schools with good gluten-free options, but they were not publicized that much online. On the contrary, some schools made their options sound really promising online, but in reality we saw they were quite unsafe and underwhelming in person.
What are the added challenges of being a student-athlete with celiac disease?
Hallie and Rayna: The hardest part will definitely be the traveling and away matches and figuring out if there will be safe places for us to eat when we are not at Union. Trusting other college campuses and new places will be challenging for sure. This will require some research ahead of time to evaluate our options and whether we will need to travel with some food. In general, we don’t really find it that difficult to fuel up before and during a match. We like to stick to naturally gluten-free snacks like apples and carrots, but we also love the occasional bag of chips or pretzels!
Do you plan to register with disability services at college? Have you thought about what accommodations you might request?
Hallie and Rayna: Yes, we do plan on registering with disability services at college. We know some older college students with celiac and know what they requested at their colleges, but we have not met with school officials for this yet.
Any more advice for those heading to college with serious food restrictions?
Rayna: Don’t discount the importance of food on campus! Food is not optional. I’d highly recommend going to the dining halls and talking to dining staff as a part of your campus visits. Also, once you choose your school, keep making connections with the dining staff and the school dietitian. Put yourself out there. This way if you have concerns or requests you know who to go to and they already know you!
Hallie: As we said, many college websites aren’t clear about how well they serve people with celiac disease and other dietary restrictions. Call or visit and see exactly what they can do. Ask the tour guide if they have any friends with food restrictions, and how they handle it there. Many colleges want to help, so don’t get discouraged!
What’s next?
Hallie and Rayna: We definitely plan to continue advocating and spreading awareness for the gluten-free community. Education is key for those that have celiac disease and their family and friends that want to support them. We will also continue in our role as Student Ambassadors with the Celiac Disease Foundation. To keep up to date with our advocacy for the gluten-free community and where we will be speaking in the future, please follow us on our Facebook page and our mom’s Instagram @lakatzman. Thanks for the support!
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It has been wonderful to watch Hallie and Rayna’s transformation from newly diagnosed and overwhelmed middle schoolers, to confident young adults helping others.
I appreciated the chance to provide feedback to early drafts of the book and I think it came out great. The book’s “Bread is Not Dead” chapter describes our Gluten Free Friends google group, and the breadmaking lesson I gave Lori in my kitchen. Lori has since taught others to make bread too. This bread making lesson is posted on our site. Give it a try!
Congratulations to Hallie and Rayna on their book and upcoming graduation, and best of luck at Union College! They are lucky to have you, on and off the court!
--Sheryl