For Your Gluten-Free Child, the Best "Comfort Food" is Self-Reliance

When our daughter was first diagnosed with celiac disease, I remember feeling both relieved (to finally have answers) and fearful for what might come next.  Will my child be able to live a "normal" life (whatever that is)? Will she miss out on the fun at parties/sleepovers/events? And what about summer camp or long visits to the cousins? How can we protect her from all this--given the idea of three meals a day for the rest of her life?

The truth is, you won't.  Better said, you can't. Sure, you may start out with kitchen pantries to update, school and upcoming events to navigate, and new routines to calibrate. And in those early days, it may seem as though you'll have to watch your child's every bite for as long as she lives.

But there will come a time, and fairly soon, when you won't be there when the food rolls out or when the orders come in. Trust me, you needn't panic! The comfort foods on the table will always change, but the real comfort will manifest along the way. As you guide your child to become a self-governing, self-advocating person with a food intolerance, you both will not only breathe a little easier, but also discover that a challenge like this can also be life-enhancing.

How do you get there? The short answer is slowly, steadily. While those safety measures are learned and negotiated, no measure will ever be more important than the knowledge and self-trust you cultivate in your child. Help her to understand her condition--use medical diagrams and whatever you can to clarify exactly what is happening in her body and why avoiding gluten is so important. And then, hand over the power a little at a time.

When you're out at a restaurant, let your gluten-free child order for himself. When a friend is throwing a birthday party, you may need to make a call to the host for a very young child, but if your partygoer is old enough to do homework, then let that call be made by him.

If your child is shy, young, or very new to this, consider posing a project to design a card explaining the food intolerance. Our daughter's version had flowers and hearts (of course), along with this message: "I have celiac disease and cannot eat gluten. These are the most common foods that contain it: (insert list). Thank you for helping me stay safe and healthy! Sincerely, Edyth." For the first year or so, Edyth handed that card to people making dietary decisions in various parts of her life.

Showing that we trust our children to advocate for their own health is like handing them wings to help them fly. After all, no matter how many kids are eating that pizza, or how many gluten-filled cakes and cookies are out on the buffet, THEY (as in, our children) will have to face decision-making moments at school, sports practice, parties, and so forth. They'll have to call on their own willpower when a kid at lunch calls them "weird" for not trying Aunt Mary's famous lemon torte, or when someone else dares them to take "just one bite." (Our daughter's answer? Say no thanks, find a safe alternative, and then commit to whipping up a safe version of that lemon cake later on!)

So... comfort foods be darned! The true comfort will arise from the ashes of our letting go, just a little, every day. Self-reliance, born out of independence and self-trust, is a skill worth teaching and worth learning, celiac or no celiac. Because when your child gains this superpower, it will translate to other parts of her life. An empowered young person who understands her own condition--one who reads labels, advocates for safe eating options, and navigates tricky social situations--will have an edge up on becoming an equally empowered, confident, and self-actualized adult.

And what greater gift can a parent give?

*****

For more tips & secrets to raising a healthy, confident gluten-free child, order a copy of the The Gluten-Free Parent's Survival Guide ... or, to help your teen navigate the challenges of going gluten-free, The Gluten-Free Teen's Survival Guide.

The Unseen (but Profound) Gifts of a Gluten-Free Childhood

When our daughter was diagnosed with celiac disease at age nine, my husband and I walked a line between relief and worry. As her health improved, my worries remained. Beyond the dietary challenges ahead, I was equally concerned for her emotional and social well-being. How would she navigate all the rites of passage to come?

But as another year wraps up almost 13 years later, I'm here to tell you that--inconveniences and tough moments aside--Edyth's diagnosis actually turned out to be among the greatest gifts of her life. I'm ever amazed at the silver linings that continue to emerge not just despite, but BECAUSE of her life as a gluten-free child!

Here are a few:

1) Priorities, Priorities

As many with food intolerances quickly realize, what we bring to the table of life is far more important than whatever is being served at the buffet. At our house, the mantra goes like this: It's not about the food; it's about the people, places, and experiences in our lives. This idea bears repeating before events or whenever self-pity creeps in.

By putting people, places, and experiences first, kids learn to value them in new ways. And that can spur involvement, whether in clubs or school or, in Edyth's case, in pre-professional children's ballet company. While that all-too-common pizza party may feel a little awkward on occasion (even with snacks in tow), the lesson is clear: you can make up for it by connecting more, exploring more, and bringing more of YOU to it all!

2) Self-Advocacy (which breeds confidence!)

Having a food intolerance automatically puts your child in the driver's seat for self-care. Of course we intervened on our daughter's behalf at first... I'm an overprotective mother, after all. So initially, we met with teachers, camp counselors, dance coaches, and others. But the steering wheel slowly moved from our hands to Edyth's through the months and years. And guess what? She took it, and long before she learned to drive.

The thing is, the more we guide our children towards self-advocacy, the more their confidence blooms. From ordering for herself in restaurants to relaying her needs to friends, their parents, and others, Edyth's self-assurance grew right along with the rest of her. That doesn't mean we weren't still supporting from the sidelines--I usually volunteered to bring at least one safe dish to most every event we attended--but even if I hadn't, I think she would have managed.

Kids take charge when they realize they can. In fact, research has shown that once a child is taught to self-advocate in one area, that personal empowerment extends to other areas as well. That said, we all know that every stage of development brings moments of insecurity. But I'm convinced that all the growing pains were less daunting because Edyth's celiac disease had helped her develop resiliency enough to brave the storms.

3) Patience and Creativity (yes, separately AND together)

 For gluten-free kids, the holiday season (and any season, really) can feel a little demoralizing. I mean, just look at that spread! Those cookies! That stuffing! And all those delicious aromas from things that cannot be tasted... sigh. But I'll share a little trick that helped us through even the most frustrating dining experiences. The mantra? If you can't take it, make it!

This became our little game, where Edyth would note any food item she wanted to eat but couldn't. And then, each week, we'd choose something from her list to make gluten-free. Truth be told, things didn't always translate perfectly. (On one such attempt she wanted cake pops. Ours were more like wilted, runny-icing covered cake squares stabbed with forks. Hideous, but tasty!)

So yeah, we bombed some recipes and nailed others. But through it all, Edyth became a fearless gluten-free cook and baker! And in an instant-gratification world, our kids can all benefit from learning to wait, right? Now in her twenties, this girl is constantly experimenting with new gluten-free creations in the kitchen--and let's just say her friends aren't complaining!

4) Empathy

When you've been the kid with the food intolerance--and thus, occasionally, a sort of outcast, you come to feel for others who face challenges of any kind. Edyth has become an outspoken advocate and a front-line upstander for anyone facing challenges. She knows what it's like, and that is a wonderful thing.

These are just a few of the gifts we've encountered along our daughter's gluten-free journey. Granted, the logistics haven't always been easy-breezy. There have been disappointments and occasional frustrations when supposed "safe foods" at a party were anything but. Still, the positives continue to outweigh the rest.

Today, our recent college graduate is studying for the MCAT and applying to medical schools. Gift number 5? Her interest in biology and anatomy that arose from curiosity about her condition. On that front, don't hide any of it! Show your child diagrams. Encourage open conversation. Help demystify the workings of the body in ways that underscore self-care. Who knew how exciting digestion or immune processes could be? I certainly did not, but the future Dr. Edyth seemed enthralled!

With all the unrest and strife in our world, this is a time to count our blessings and hold them close. I know that for our daughter and our family, the great gift of a once-overwhelming diagnosis has brought so much more than a return to physical well-being. It has brought a lifetime of lessons to grow on.

Happy holidays--and may 2024 bring joy, peace, and good health to us all!

For more tips, practical advice, and insights on raising gluten-free kids, consult The Gluten-Free Parent's Survival Guide and The Gluten-Free Teen's Survival Guide . The Gluten-Free Parent has written for numerous publications including Gluten-Free Living, Allergy Magazine, Whole Foods Magazine, and many others. She continues to advocate for parents and children living their best gluten-free lives.

It's Not (JUST) About the Food: Keeping the Focus on Experiences

I know, I know... it's easier said than done--especially when that holiday buffet is laid out like pretty poison under the twinkle lights and the kids are so excited about the snowman cookies.

That's why the mantra I'm going to share with you needs repeating. And repeating. And repeating again:

It's not (just) about the food; it's about the people, places, and experiences in our lives!

And yes, I'm fully aware that we all need sustenance, a little detail that feels so much bigger for anyone with celiac disease or gluten intolerance (and their parents). Still, life--and I'm talking about real, wholehearted living--includes not just one sense, but five. And there's so much to see and smell and touch and hear... yet at times, we deemphasize this fact and overemphasize our fear around "getting glutened." I know. I've been there.

And that's exactly why, after realizing my own misdirection, I realigned the ship and created a mantra. Then, nearly every day through our celiac daughter's elementary, middle, and even high school years, I--and eventually we--repeated this mantra. Now that she's in college, it's basically woven into her DNA. And, given how involved she is in a long list of clubs and activities, the mantra may have had an even more profound impact than I'd imagined.

At first, when you say it, you may be met with resistance. And sometimes, that resistance will be your own.

Because when this or that parent (or teacher or coach or other person who should know better) hasn't provided a single item that your poor David can eat at the event--even after you'd called to inform them of the situation--it's easy to revert to the idea that yes, it IS all about the food. It doesn't matter that David always carries an "emergency" bag of GF snacks in his backpack; still, you expected better. So your inner voice rages: Now my son will have to be the weird kid, the sad kid, the left-out kid who can't eat what everyone else is eating. And so does a nine-year-old’s birthday celebration become, in your mind, a complete DISASTER!

Again, been there.

But having lived and learned, I'm here to tell you that the calamity in your mind was not invited to this party. Unless David has not eaten all day (which is never a good plan for any kid, let alone a GF one), he is probably operating with an adequate level of nutrients in his system to survive the event--with or without that emergency stash. And for the record, David is probably out in the jumpy castle with his friends, playing a game of robot invasion in zero gravity. Food? What food?

The thing is, the more we worry, the more they worry. They sense it. They're like super-sponges when it comes to taking in our anxieties. And our fears aren't just heard; they're actually MADE and then amplified.

So remember to breathe. And say it alone if you must:

It's not (just) about the food; it's about the people, places, and experiences in our lives!

Shift your default setting away from fear and towards more encouragement for your child to get out and take an active role in the world. Food be darned (because "emergency" stashes come in many flavors and sizes). Bring back the focus to what matters most, and your child will follow suit. And when the event allows, send along something delicious to share with everyone, every time. Because sharing isn't just about what's on the plate; it's about connection.

OF COURSE there will be difficult moments. When you love your child, you want him or her to feel great about every aspect of life. It's natural to feel a twinge of loss in thinking about those spontaneous pizza parties or gingerbread house-making gatherings (though there are ways around these, too). And I'd never suggest that we stop being vigilant--because we absolutely must! But ultimately, our vigilance must become their vigilance--and the sooner, the better. You will relax more as your child learns to self-advocate and to navigate the world on her own.

So as the holiday season launches, go ahead and check all the candy lists twice. But do it with your child, as an exercise in growth. Host a gluten-free soirée at your house, and continue to encourage a walk-on role in life. And, if there is something at that not-so-safe buffet table that looks particularly enticing, suggest keeping a "GF wish list" of things to recreate later in your own kitchen! We've recreated cake pops (though ours were square), calzones, and so many other dishes through the years. Many were great, and a few were total busts. But we learned and had lots of laughs and delicious memories in the process.

The bottom line? Don't let the fear of what your child can't have or do eclipse the richness of all she can have and do. Because after 12 years of parenting a celiac child (now a young adult), I realize that the journey has been far more sweet than bitter. In fact, I am 100% certain that our girl wouldn't be as self-assured, multifaceted, resilient, or involved in life as she is today had she not been diagnosed all those years ago.

She is a healthy, flourishing example of the truth that indeed, it's not (just) about the food; it's about the people, places, and experiences in our lives.

Say it. Teach it. And most of all, live it.

Elyn Joy is the author of the newly-revised and pediatrician-recommended book, The Gluten-Free Parent's Survival Guide , as well as The Gluten-Free Teen's Survival Guide. Her articles and interviews have appeared in Gluten-Free Living, Whole Foods Magazine, Allergic Living, and numerous other GF sites and publications. Elyn has been a featured presenter at Celiac Awareness events and has taught various courses on the topic. For more information, visit https://www.glutenfreeparent.com or contact elynjoy@glutenfreeparent.com.