Twelve years ago – at ages 5 and 3 – we were diagnosed with celiac disease. This means for the rest of our lives, we can’t eat any gluten whatsoever because it damages our intestines and we become really sick.
Some people don’t eat gluten by choice, but for us, there is no cheating with our diet. It only takes a breadcrumb for us to get glutened, and then we vomit continuously for hours.
Trust us, it’s not pretty.
We were really too young to remember life before celiac, but our parents say we were tired, crying and constipated a lot.
We remember being a little sad that we had to bring our own snack to birthday parties and couldn’t eat some favorite foods anymore like Frosted Mini Wheats.
Now we feel like experts, but even we still get glutened once and awhile, and it’s still not pretty. Here are some tips to avoid gluten and stay safe:
- Get support. When we were younger, we were really involved in the Celiac Support Group at Boston Children’s Hospital. We loved meeting other kids with celiac disease at events, and feeling free to eat whatever we wanted.
- Get your family on board. We’re lucky to have super supportive parents who created a gluten-free house, so everything is safe for us. Even our grandparents made their summer home gluten free!
- Eat before going out. Other families and restaurants don’t always understand that they really need to be careful of cross-contamination. Make sure to eat before going out with friends, or bring a bar with you.
- Educate your date. If you do feel safe at a restaurant, ask your date to order gluten free too, so you can share. But if he eats gluten, make sure he brushes his teeth first before kissing you to avoid any problems!
- Don’t be afraid to explore. We’ve travelled all over with our family and we always find amazing little mom-and-pop restaurants in parts of town we wouldn’t otherwise visit. Italy was one of our favorite trips – the pizza was out of this world good! Just be sure to do research ahead of time to make sure you feel comfortable. We really like the app Find Me Gluten Free to research safe places to eat.
- Stand up for yourself. Be aggressive when doing research – don’t be afraid to be your own advocate. And don’t let celiac stop you from going out and enjoying life and food with friends.
- Use social media. We started an Instagram account called sistersansgluten because we felt like our experiences eating out and traveling could help newly diagnosed people the same way we found help online. It has been so empowering and fun to document our journey.
If you’ve recently been diagnosed with celiac disease, don’t let it get you down. You can still go out and have fun with your friends and family if you plan ahead a little, and you’ll get to experience new and different places and foods.
Plus, having celiac disease can help you learn to deal with peer pressure like it did for us. We’ve had to say ‘no’ our whole lives, so saying ‘no’ to things we don’t want to do now just isn’t a big deal.
Learn more about celiac disease.
About the bloggers: Emma and Abby Frank are cared for by Dr. Dascha Weir, associate director of The Celiac Disease Program at Boston Children’s Hospital. They are in 11th and 9th grades, respectively. Follow them on Instagram at @sistersansgluten.