When my 4-year-old son, Eitan, was diagnosed with Celiac disease over the summer, I was fortunate to be surrounded by an abundance of resources that helped me switch him to a gluten-free diet. A friend introduced me to someone who is active in a Celiac disease awareness and support group—she was super helpful and clearly the expert on all things gluten-free. She encouraged us to come to events, meet other families and check out their website. While it was great to be so warmly welcomed and introduced to these opportunities, I felt so tired thinking about taking on another new identity and community. Isn’t being a Jewish, same-sex family with a kid on the autism spectrum enough? I have no more room for pride or awareness bumper stickers on my car! I’ll admit it: I moped around for quite a while thinking about how this diagnosis would change my son’s life.
From Eitan’s earliest days I had an instinct that perhaps he’d have Celiac disease because of a family history of the disease. But, you know, with juggling work, two babies and getting through the day to day, Rebecca and I never moved forward with getting him tested. But after Eitan received an Autism Spectrum Disorder (ASD) diagnosis, the pressure became more immediate after we read about the huge percentage of kids on the spectrum with gastrointestinal problems. It still took us over a year to get him to a pediatric gastroenterologist for the initial blood tests—managing all of the services and needs that came with the ASD diagnosis was so overwhelming that the Celiac concerns simply stayed at the bottom of the list.
So when the call came from the doctor with the positive test results, I wasn’t all that shocked by the news. But the pit in my stomach was still very much there. Why did we wait so long? How could I have been so neglectful? Has he been in pain all this time? I was also teary about the foods he would never be able to eat. I felt devastated for him that he would never eat Italian food in the North End and would have to say goodbye to some of his favorite foods—Joe’s O’s and Dunkin’ Donuts. And for years we’ve had a family tradition of going to A&J King bakery on the weekends, where he devours a brioche roll as big as his face. Now we can’t go there, and I have no way of really explaining this to him.
In Carla Naumburg’s post, she talks about learning to embrace gratitude specifically during the more challenging moments in life. The truth is that Eitan’s diagnosis is far from the end of the world, especially since he only eats about 10 foods right now anyway (and happily eight are already gluten-free!). And while I feel guilty for not having him tested earlier, he’s still young and will heal quickly with the right diet. I used to be mystified by those who choose to eat gluten-free for its health benefits, but now I’m grateful for this trend. Without it, people with Celiac disease would have vastly fewer options in both supermarkets and restaurants. Of course Eitan won’t eat any of these specialty products right now, but maybe he’ll become more flexible about food as he gets older. In the meantime, I don’t have to spend $8.99 on black bean pasta at Whole Foods Market.