Special Needs Diets: The Art of Living with Dietary Restrictions

When my youngest biological child was just a year old, she was diagnosed with celiac disease. Having never before heard the term–and certainly not knowing what it meant–my husband and I quickly became educated through doctors, dietitians, books, and websites. First, we had to figure out what gluten (the culprit in my daughter’s case) was; then, we had to familiarize ourselves with all of its other names and favorite hiding places in our food, which was/is not an easy task. To make ourselves feel better psychologically, we went through our pantry and put a smiley face sticker on everything that Katie could eat.

Many of you parents can understand what we were going through. Whether it’s due to allergies, behavior modification, digestive issues, skin issues, respiratory issues, autoimmune diseases, or simply personal choice, more and more families are finding themselves faced with dietary restrictions. Suddenly you are forced to become experts at analyzing lists of ingredients, researching diets and menus, and knowing just the right questions to ask anyone who prepares food for your family. And you become an obsessive double-checker. (At least, I did.)

Now fourteen years into the gluten-free lifestyle, I’ve learned quite a bit about how to navigate it. I’ve also gleaned some great information from other parents of children with dietary restrictions. Here’s what we’ve found.

Be candid with your child. As soon as possible, begin explaining to your child about what it means to have his particular dietary restriction. Use language that is easily understood. (Since my Katie was just a toddler when she was diagnosed, we said things such as “That will hurt your tummy.”) While you need to empathize with your child when they are feeling disappointed about not being able to eat the same things that other children are eating, it is also your responsibility to teach them to cope with it and even to have a positive attitude about it. (Ex: “I understand your disappointment, but let’s think about all the different foods you can eat. Tell me some of your favorites.”) Tip-toeing around the issue or acting as if nothing is different does not prepare your child to live in a world that does not share his/her dietary restrictions. As the parent, it is also your responsibility to do the best you can to always have a comparable substitution on hand for your child when you know that forbidden food is going to be made available. If you don’t have a substitute with you, and if you cannot easily obtain one, it is important to tell your child that you are sorry and that you will get him something on the way home or at home. This emphasizes to your child that his/her needs are important to you.

On a personal note, Leah O’Gwynn Kackley, whose son has allergies to wheat, shellfish, and tree nuts, acknowledges, “It’s okay to be sad that your child has issues with food that make him/her different from everyone else. And it’s okay to feel sad when you see commercials on TV for yummy things that your child can no longer eat. But, don’t stay sad. It’s important to remember that special dietary needs can be seen as a blessing. There are so many other things that children have to suffer through. Special diets are easy compared to some of them! Mostly, concentrate on what they can eat and be positive about the good parts of their diet.”

Make decisions as a family. Some people choose to have the entire family follow the same diet as the member with the medical issues, while others do not. In my family, Katie is the only one who is entirely gluten-free, and she is fine with this. It is a personal decision that your family must carefully make together, weighing all options.

Research. When we first received Katie’s diagnosis, we were completely overwhelmed. But after speaking with dietitians and doctors, then finding a variety of books and a myriad of websites, we quickly found the information we needed. We also found great comfort in knowing that we were not alone in the gluten-free world. Similarly, you will be able to find information, encouragement, and support through these resources. It will feel quite daunting at first, but over the course of a few weeks or months, the new diet will become second-nature. Not to say that it won’t be frustrating or inconvenient at times, but you will know what to do.

Be (overly) prepared. Before you go to a restaurant, look at their website for nutritional information and/or speak with the manager, chef, or anyone else who can fully answer your questions. When going to a friend’s house for dinner or a party, ask for a full list of ingredients for everything served. If you are uncomfortable doing this, or if you are going to someone’s house whom you may not know very well, simply bring your own food for your child. (Honestly, this can be much easier.) In school and daycare situations, it is best to send your child’s meals and snacks from home, rather than risking contamination or mistakes made by the school’s cafeteria. When Katie was in elementary school, I sent a bag full of various non-perishable snack options at the beginning of the school year, and they could be used during regular snack times or class parties. This way her teacher didn’t have to spend time analyzing each food item that was brought to the classroom.

Give your child ownership and responsibility. Most children like being responsible for themselves, and this is a tremendous way for them to learn this skill. Through open communication from the beginning, you can help your child learn all about the dietary restrictions and be educated in what he/she can and cannot consume. After all, you won’t be able to be present every single time food is offered throughout his/her lifetime.

Communicate. Talk with your family, friends, and anyone else who serves as a caregiver to your child about the dietary restrictions. While you can’t expect everyone to be as aware of all the ins and outs of the special diet as you are, you can expect them to be very aware of the situation. Some people will go out of their way to make specialty foods for your child when you visit their home, which is very kind and thoughtful. However, even well-meaning friends and family can make mistakes when preparing specialty food items, and it is your responsibility to be that obsessive double-checker on behalf of your child. You really can’t worry about hurting the host’s feelings; your child’s health is much more important, and your host should be understanding.

The good news is that knowledge and understanding about special dietary needs are becoming more widespread. More and more grocery stores are carrying specialty food items, though they tend to be more expensive than regular foods. Stronger regulations on food labels and ingredients lists are making it easier to know which foods are safe and which are not. Helpful resources such as books and websites are becoming more abundant, and the internet also serves as a wonderful tool to connect you with others who are dealing with the same situations. Take advantage of all of these resources!

Living with dietary restrictions doesn’t have to be debilitating. One’s attitude about it has such a strong effect. As parents, we must remember that our children follow our lead and learn from our example. So set a good one!

Mary Kelly Branning, whose daughter has a peanut allergy, offers further advice. “Don’t live in fear. Take precautions, be aware, but don’t change everyone else’s life to fit your special dietary child. My boys eat peanut butter sandwiches every day. (And for those who tell me that my child’s allergy must not be as bad as theirs, she is classified as “severe.”) Meg understands her allergy and realizes that it is part of life. It has been a great object lesson for accepting your own limitations.”

Such a good lesson for all of us.