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.

5 Tips for Raising a Fearless Gluten-Free Party-Goer

(From The Gluten-Free Parent’s Survival Guide by E. Joy [2020, Amazon.com])

Neither we—nor our children—should live in fear of the great wide world. Aside from its obvious downsides, being gluten-free is also a sort of adventure, an opportunity for personal mastery over one's health (which can translate to other areas of life, too!). One of the most important tasks we face in raising gluten-free kids is that of helping them to help themselves, and ultimately to become the drivers of their own health and destiny.

That said, when you're starting out on this GF venture, you may need to intervene to show them the ropes. You will have to decide how much or how little your child should take over these, or any, steps towards gaining social confidence. Trust your instincts, and teach your child to trust theirs.

In the meantime, let the following helpful (and proven) tips guide you through the seasons of celebration ahead:

1. If possible, check in with the hosting parent/guardian before an event. Let them know that your child is gluten-free, and ask about food-related plans. That way, you will have the option of preparing items to coordinate with the existing menu. (For instance, if they are serving chocolate birthday cupcakes, you may be able to make or purchase a GF version to bring to the party.)

2. In our experience, kind hosts may offer to make or serve gluten-free food items. In these cases, it’s perfectly acceptable to mention cross-contamination, and/or to simply decline and say that you’re happy to provide your own snack or meal. If offered a questionable item, guide your child to always be gracious and appreciative; however, if she has celiac disease, she should not partake. SO…

3. From a safety standpoint, always bring your own something—be it a snack, a dish to share, a dessert—whatever will help make the event a bit more carefree.

4. Another rule for the celiac child to live by: Avoid going to any event hungry! By eating a little something beforehand, your child will be better able to enjoy the company and the experience--with or without the food. Remember, no social gathering is worth days of illness!

5. One of our all-time favorite tips for your GF child to take into the future: Take note (either literally or mentally) of any intriguing food items at an event. Keep these ideas in a notebook, and commit to making something similar, but gluten-free! (We did this right after a party during which my daughter was longing for a cake pop. Our next-day version, more like a frosted cake-square on a stick, made a fun activity--and they were yummy, too!) Edyth was thrilled--and every since then, she keeps a list of "Things to make GF" on a little notepad in her purse.

Finally—and perhaps most importantly, remember the mantra, and say it again and again: We go to events for the people and the experiences above all!

And in this sense, being gluten-free is the blessing that reveals the most important gifts in our lives.

Happy Autumn!

For a list of GF candies considered safe for Halloween, or to order The Gluten-Free Parent's Survival Guide, click below:

Celiac-Safe Candy Lists

Link to The Gluten-Free Parent's Survival Guide

Elyn Joy is an author living in Denver, Colorado USA. Her health-related books, The Gluten-Free Parent's Survival Guide and The Gluten-Free Teen's Survival Guide, have helped guide children and parents everywhere transition to flourishing gluten-free lifestyles. Elyn has been a featured speaker for Children's Hospital of Colorado; her writings have appeared in several magazines, including Gluten-Free Living, Simply Gluten-Free, Whole Foods Magazine, and Allergic Living, among others.