How Gluten-Free Children Grow Up

When I post a blog, I always ask myself what makes it valuable to gluten-free readers. So I usually don’t write a lot of personal stories. I know some blog followers really love personal writing and some gluten-free bloggers are great at it, but this is really a blog for Gluten-Free Living magazine and not me personally.

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 preschool 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 untradeable 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?

So the point of my personal story is to say your children will be just fine. One day you might watch them walk away from you in airport. They will be nearly grown up, gluten free, yet very strong, confident, smart and fearless.
And while it might be a little painful to watch them go, it’s what you’ve really hoped for all along.
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  • Thanks for that touching story. As a mom of two young GF boys, one in 2nd grade and the other in preschool, it was very inspirational.

  • Amy

    Hi Caryn,
    Thanks for your kind comment. I know from experience that your boys will have every opportunity to grow up to be strong, capable, happy young men. And I know it will happen faster than you could ever believe!

  • Thank you for posting this. I think it’s also a positive touch for those who are diagnosed in adulthood and think living is either over or has to do a 360 and totally change. It shows us that life does go on and those of us who can’t eat gluten can live happily-ever-after.

    PS Some of my favourite gf goodies are in the UK. I hope your daughter enjoys them

  • Thank you for writing about your daughter. We, too have a daughter with CD. She was diagnosed at 18 months and since the minute of dx I have worried most about her social well-being. Your daughter is beautiful and strong and your article is a very welcome guiding light.

  • Thank you for a wonderful article. We appreciate your article. We have a four year old daughter with CD. This fills us with hope for the future…I can only imagine how scarce things were 20 years ago. Every day the world is getting more GF aware. Good luck to your daughter in England!

  • Amy

    Thanks to everyone who commented. I’ve also heard from many readers in other ways and I am so happy so many people were touched by this story.
    My daughter is faring well in London. The university she is attending has marked all the gluten-free offerings in the dining hall. This is something they started doing to help her, not something they routinely label. I am grateful for this extra effort and relieved she can eat safely.
    Over the years a number of people have helped with the gluten-free diet in big ways and small, usually without much fuss and almost always without expecting even a thank you.
    I suspect they never really knew what a big difference it makes!

  • Nan

    Thanks for posting Amy. My twin daughters (with celiac disease) are seniors in high school and heading to college in the fall. I am hopefull they will be as successful in managing their food as your daughter is!

  • My 20-YO son started his freshman year in London, but without a dining hall contract. It was a bit of a celiac mine field for him since codex standards were a bit misleading. Tell your daughter to join the UK Coeliac Society http://www.coeliac.org. They have a great free GF directory. When my son discovered that pubs served Strongbow Cider, he felt normal.

  • Thank you so much for writing this. It brings tears to my eyes but also gives me hope. My 4 year old daughter was diagnosed with CD just last week. It has been an emotional and frustrating week. This post came at a great time.

  • Thank you.

    Mother of recently diagnosed two-year-old.

  • Great post, Ann. Just caution your daughter about sausages – most commercial brands are not GF. For the most part though the supermarkets in England carry a great selection of gf goodies.
    I went the other way to your daughter – I was diagnosed in England 3+ decades ago and then came over to the US.
    Alas I have never learned to bake very well but I do manage to cook gf all the time. Some of my trials and errors can be found at RenegadeCeliac.blogspot.com

  • *wiping away tears* Our son was diagnosed with Celiac Disease a year ago. He was a year and a half old. While we’ve got the gf diet down and our son is thriving, I still worry about the future. This is the first story I’ve seen of its kind. Thank you so much for sharing it. It gives me hope.