My daughter’s first 8 years involved a constant string of stomach aches. Doctors weren’t concerned, and every time one hit, we told her it’s part of being a kid, and went about our day. As she slowed in the growth chart from the 2nd percentile to the 1st percentile, I asked her pediatrician to check her for celiac. By the time the official diagnosis came in, we were all prepared (and even somewhat excited) for her to embark on a gluten-free diet, but none of us appreciated how difficult it would be.
Yes, there are gluten-free options in grocery stores and bakeries and restaurants. But see, that’s not often helpful. With celiac, even a spec of gluten can be harmful, can lead to vomiting and days of pain. Cross-contamination is an issue, which makes anything dealing with food preparation difficult. She can’t have the gluten-free cupcake on the bakery shelf or the salad that’s been prepared by the guy who just touched a crouton. She can’t go to dinner at a friend’s house if they cut their fruit on a cutting board that’s ever been used for bread or drain the gluten-free pasta in a colander that’s ever been used for regular pasta.
During the elementary school years, for every birthday, she would head to the teacher’s lounge to extract and then nuke her frozen cupcake while the other kids shared the fresh offering of the day. With 24 kids per class, it was almost a weekly occurrence. And she was just 8.
Girl Scouts, birthday parties, play dates, gingerbread house making at school, the international day fair, every day brought a new occasion to feel left out.
Bat mitzvah season, which spanned two full years, was a challenge, to say the least. With each invitation, I contacted the mom to ask if she would be so kind as to allow me to speak with the caterer. I explained that the nuances with cross-contamination are often lost on folks, even catering professionals. I explained I knew the right questions to ask and that I wanted to take the burden off her plate. Then the phone tag and back and forth ensued. While most caterers could promise a tasteless chicken cutlet with rice to be specially produced and held for my daughter in the back, when all was said and done, she usually came home hungry, having failed to find it despite asking several of the wait staff.
Don’t get me started on the walls of donuts and overflowing milkshake bars and chocolate fountains she missed out on. At 13, my daughter refused to tote around a lunch bag or pull out her own version of chicken tenders. I think she may have shoved a dry cookie in her mouth during a trip to a bathroom stall. My heart ached for her those two years.
Times are changing quickly though. My younger daughter (who has no allergies or food issues), isn’t allowed to bring food to school for birthdays. The moms participating in the international fair are required to list all ingredients. I look back and wonder why it didn’t occur to me to advocate for that five years ago, but I’m happy others figured it out not long after.
In a world that might seem allergy-friendly, until you are dealing with a food restriction, you won’t realize just how hard it is. I’ve learned 4 key tips to make things just a bit easier.
1. Focus on what to add vs. what to take away. We found a fantastic dietician who specializes in celiac disease in kids, and her sole goal is to make sure our daughter is thinking about the intake of the good stuff her body needs. Ice cream is encouraged, so she gets her calcium. Oatmeal raisin cookies may be consumed for breakfast. Cheddar is sprinkled on broccoli. It’s not a perfect diet, but it’s one we can all live with.