Caring for Children and Teens With Celiac Disease

From going gluten-free to follow-up care, here's what you need to know

mother and son in kitchen
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When your child or teenager is diagnosed with celiac disease, you may feel a variety of emotions. You may feel relieved that you finally understand the medical problem (and that it's treatable), sadness that your child will be denied "normal" food and must follow a lifelong gluten-free diet, and trepidation at the prospect of implementing a complicated lifestyle change.

All of these emotions are normal—raising a child is complicated, and raising a child who has celiac disease is even more complicated. You'll need to cope with a difficult diet, manage school issues and follow-up care, and make sure your child understands what to eat when you're not around.

But there's good news, too: you may find that your child feels better, has more energy, and grows faster now that she's been diagnosed. And managing the diet ultimately may be empowering for your child as she learns to navigate social situations.

Here is what you need to know to cope with your child's celiac disease diagnosis, from implementing the gluten-free diet to necessary follow-up care.

Eating Gluten-Free at Home

Although there are several medications in development, there's only one current treatment for celiac disease: a lifelong gluten-free diet. Once your child is diagnosed with celiac, she'll need to go gluten-free.

The gluten-free diet is complicated, and it's easy to make mistakes, especially in the beginning. To help families understand and implement the gluten-free diet, Hilary Jericho, MD, assistant professor of pediatrics at the University of Chicago Medicine, recommends they talk with a nutritionist who is expert in the diet.

Dr. Jericho refers her celiac patients and their families to a nutritionist, and believes it helps significantly.

Some families—especially those who have more than one family member diagnosed—decide to make the entire kitchen and house gluten-free. Dr. Jericho says that can help, but isn't always necessary: "Just taking the diet seriously and doing everything you need to do in the kitchen lets the child know it's a real condition," she says.

If parents decide that the entire house doesn't need to be gluten-free, they'll need to put in place rules everyone must follow to allow the person with celiac disease to share a kitchen with those who can eat gluten. This will require compromises on both sides. In addition, caregivers cooking for a celiac child need to make sure they use dedicated gluten-free utensils and pans, and guard carefully against gluten cross-contamination in the kitchen.

School and Social Events

Children and teens with celiac disease face issues at school and at social events. Many schools—especially elementary schools—hold food-oriented celebrations, and children's parties inevitably feature birthday cake or other gluten-y treats.

At this age, children want to fit in, not stick out—but having a different diet than their peers makes them stick out in a big way, Dr. Jericho says.

"It can be very hard and daunting for children—they don't want to be an outsider," she adds.

If your school has a school nurse or nutritionist who's willing to work with you, it may be possible for you to arrange gluten-free school lunches for your celiac child. Barring a complete lunch, you could ask that pre-packaged gluten-free snacks be made available in the cafeteria. It means a lot—more than you might realize—for a celiac child to be able to order something in the school cafeteria line.​​

It's important, especially for younger children, for parents to provide a treat they can enjoy at a social event—for example, a slice of cake or a cupcake they can eat at a friend's birthday party or a school celebration.

For parents who have time, supplying a treat that looks as much like what the other children will be eating as possible can really help a celiac child feel included. This would involve calling ahead to see what the hosts will be serving, and then duplicating that.

For teens, it can help to teach them safe brands of food they can grab on the go, such as gluten-free chips and other snacks. In addition, for older teens, identifying fast food restaurants where they can find something gluten-free to eat can help when all their friends want to stop and get something to eat.

Parents of younger celiac children also need to know that some classroom craft projects use flour (airborne flour may cause a reaction in people with celiac disease), and some craft supplies, such as fingerpaint and PlayDoh, contain wheat. You may need to recommend or even supply alternatives, either for your child or for the entire classroom.

Follow-Up Care

Your child or teen should receive regular follow-up care from a doctor who is knowledgeable about celiac disease, potentially your pediatric gastroenterologist. These follow-up appointments will help you address any problems that arise, such as lingering symptoms.

Children with celiac disease also should receive periodic blood tests that can help determine if they're adhering to a strict gluten-free diet. These tests likely will only show a problem if your child is getting a lot of gluten in her diet, but experts say they can help to spot a potential issue. Talk to your child's doctor about how often she should have testing done.

Since people with celiac disease are at risk for specific nutritional deficiencies and may be either overweight or underweight, experts also recommend that doctors check height, weight, and body mass index (BMI, which helps to determine if someone is overweight) at each visit.

In addition, experts recommend that children with celiac disease take a multivitamin. Celiac disease can lead to deficiencies in several important nutrients. Although no studies have been done on this, experts believe that a multivitamin might help stave off nutritional deficiencies.

Medical Issues

Children who have undiagnosed celiac disease may feel as if they have no energy, and they may be shorter than their peers. Once they're diagnosed and begin to follow the gluten-free diet, these problems likely will reverse themselves—you may even see a strong growth spurt.

However, some people with celiac disease—including children and teens—have lingering digestive symptoms once they've been diagnosed. In some cases, these symptoms are due to hidden gluten in the diet, but in others, they may indicate a different condition, such as gastroesophageal reflux disease. Your child's doctor can help you figure out what's going on.

Dr. Jericho also watches for anxiety and depression in her young celiac patients. Depression is more common in teens with celiac disease, although following a strict gluten-free diet appears to alleviate symptoms. Behavior issues, such as attention deficit-hyperactivity disorder, also seem to be more common.

Children Who Fight the Diet

Young people typically heal quickly from celiac disease, and tend to do very well. However, your child won't heal if she won't follow the gluten-free diet. While the vast majority of children and teens follow the diet strictly, a few don't, Dr. Jericho says.

The youngest children are the easiest to switch over to the gluten-free diet, since they don't have that much experience with gluten-containing foods and it can be easier to control their diets, Dr. Jericho says. Persuading adolescents that following the diet is important can be more challenging, and this is particularly problematic with adolescents who don't get noticeable symptoms when they eat gluten, she says.

It's not unusual for a child or an adolescent who doesn't have symptoms to nonetheless be diagnosed with celiac disease because a close relative—a parent or sibling—did have symptoms and was tested and then diagnosed with the condition, Dr. Jericho says. Celiac disease runs in families, and medical guidelines call for close relatives to be tested once someone is diagnosed.

Anyone who has positive celiac disease blood tests and has endoscopy results that show celiac-related damage should go gluten-free, she says, even if that person doesn't have symptoms. But if a tween or a teen with celiac doesn't get symptoms when she eats gluten, she's much less likely to stick to the diet. "It's constantly a battle," Dr. Jericho says.

She uses several explanations with her patients to illustrate the importance of the gluten-free diet, and says parents can use similar techniques with their children. For example, people with celiac disease who don't follow the diet are at risk of bone loss and broken bones, she says: "I talk to them about how nobody wants to be doing a sport and suddenly have a leg break for no reason."

Dr. Jericho also notes that anemia—which can cause weakness and lightheadedness—is a risk for people who have celiac disease but aren't gluten-free. She tells reluctant tweens and teens that they might not have as much energy to compete in a sport or to participate in other activities with their friends.

Finally, she explains to girls that celiac disease can harm their future fertility if they don't follow the diet. "I tell them that one day, down the road, they may want to start a family, and if they continue to eat gluten, they may have problems with that."

Promoting a Positive Attitude

One of the most important things a parent can do to help a child with celiac disease is to encourage the child to feel good about having the condition. "Don't use discouraging words," Dr. Jericho says. "Call it the child's 'special food' and try to always put a very positive spin on it. Make sure to always make the child feel special."

In cases where the child can't have something that's being served to others, parents should make sure to have an equal or better substitute on hand. If there are siblings who are not gluten-free, then make sure "everyone has their own special treat," which means the gluten-free child wouldn't share her treat with her non-gluten-free sibling, either.

At school, a little information about celiac disease in the classroom can go a long way. Dr. Jericho has suggested to elementary school-age children that they create a presentation for their classes on the condition and the gluten-free diet. Those that have done so have enjoyed the experience, and have seen support and understanding from their classmates increase, she says.

"Oftentimes, people will ridicule and make fun of things they don't understand," Dr. Jericho says. "So much of life is kids not understanding what's going on." Presenting information to the entire class on celiac disease and the gluten-free diet empowers kids, and helps their classmates understand, she says.

A Word From Verywell

Caring for a child or a teenager with celiac disease can be challenging for any parent, but you'll realize that it's worth the struggle as you see your child begin to thrive gluten-free. There's no question that the gluten-free diet does have a steep learning curve.

However, you'll likely find that both you and your child pick it up fairly quickly, especially if you have some help from a nutritionist along the way. Finally, having celiac disease can be empowering for children and teens as they learn to advocate for themselves and help to teach their classmates about the condition.

Source:

Snyder J et al. Evidence-Informed Expert Recommendations for the Management of Celiac Disease in ChildrenPediatrics. 2016 Sep;138(3).