Tuesday, January 11, 2011
How gluten-free children grow up
But today I think my personal story - really the story of my 20-year-old daughter who has had celiac disease since she was two - will be very helpful for any parent worrying about a child who has to follow the gluten-free diet.
Yesterday morning I held back tears as I watched my daughter wind through airport check-in on the first leg of her flight to London. She's studying abroad in the city of castles and queens and royal weddings for four months.
She stood out in the crowd in her bright green coat, with her long blond hair and deep dimples that attract admiring attention she is always oblivious to. To me she looked so small and so strong at the same time.
From the moment she was diagnosed with celiac disease, my husband and I made a commitment to never let her special diet roadblock anything she wanted to do.
She went to pre-school and ate special snacks stored in the cabinet there. She was a Girl Scout who sold the most cookies in her troop one year even though she has never tasted one. She played soccer, ice skated and danced. She traveled to Spain with a friend in eighth grade, went to New York with her marketing class in high school, and attends a college further away from home than any of the other fifteen students and graduates on our street.
There were small things to cope with too -- birthday and pizza parties to which she always brought her own food, classroom treats substituted from a bag of gluten-free goodies provided either by me or an understanding teacher, dinners out that required interrogating the server, college parties that could never include beer.
We hit some bumps along the way including one Oreo cookie she couldn't resist trying, some bigger girls in elementary school who wanted to take her un-tradeable food at lunch and a grumpy middle school cooking teacher who couldn't keep gluten-free arrangements straight. There are probably challenges and temptations she faced that I know nothing about.
But through it all we stuck to the simple motto that while the diet dictates what she can eat, it should never limit what she can do. When she was picking a college, one school was willing to buy special products and keep a designated area in the dining hall for her. But other factors lead her to choose a school where she would be more on her own to deal with being gluten free. We had encouraged her to make a choice that acknowledged her diet but was not controlled by it. We taught her that there are always ways she could find something to eat.
She surely took this lesson to heart.
She decided to study abroad this semester and worked through a labyrinth of arrangements to enroll, choose classes, cover costs and get to London. She is the only person from her large university in the program and headed across the ocean without knowing a soul. When I asked her about eating, she said she was sure she could find enough safe and varied options and never really worried about it.
OK, maybe she learned the lesson a little too well for my liking. We subsequently got in touch with the university in London to double check meal plans, dining hall options and other alternatives.
But deep inside, my heart bursts with how proud I am of her for wanting this adventure and making it happen.
The gluten-free world has changed so much in the 18 years since my daughter was diagnosed. Gluten-free food in those days consisted of a couple of dusty boxes on some back shelf in a health food store. The other choice was to fill out a paper order form and send it (in an actual envelope, with a real stamp, through a real mailbox) to the handful of gluten-free companies that existed. Or you could make the food yourself. We tried and failed many times to make edible gluten-free pretzels so I still get a little giddy when I see the bags of them in my regular supermarket.
Despite the changes, I suspect parents of children diagnosed with celiac disease or who have gluten intolerance have the same worries about the path and the future for their children as I did for my daughter.
Would she be able to grow up normally? Would she be able to eat safely? Would she have friends? Would she be teased because of her dietary differences? What about kindergarten, middle school, high school, college? Would she be able to handle the diet on her own?