Are you a parent of a child who was recently diagnosed with celiac disease? Did your child’s pediatrician advise you to put your kid on the gluten-free diet? Maybe you’re looking for answers and think your child could have celiac disease? You’re in the right place! Here you can find information on celiac disease in children, kid-friendly gluten-free recipes, and the latest research on pediatric celiac disease.
Celiac disease is an autoimmune condition triggered by gluten, a protein found in wheat, barley and rye. When someone with celiac disease eats gluten, their immune system damages the small intestine. The only treatment for celiac disease is a strict, lifelong diet. Learn more about celiac disease.
As a parent of a child with celiac disease, you have the unique challenge of teaching your child about celiac disease and eating gluten-free, as well as cooking them food they can safely eat. This may seem like an overwhelming challenge at first, but parents often say that it gets easier with time.
You can start by downloading our free guide for parents of kids with celiac disease, the Getting Started Guide, or by reviewing the information in this section.
There are over 250 symptoms associated with celiac disease, and a person can have any combination of these symptoms—some people have no symptoms (called “asymptomatic” or “silent” celiac disease).
Common celiac disease symptoms in kids include:
If you think your child could have celiac disease, it is extremely important that you keep them on a normal, gluten-containing diet throughout the testing process. Going gluten-free prior to testing can lead to inaccurate results.
The celiac disease testing process begins with a simple blood test.
If your child is diagnosed with celiac disease, your child’s pediatrician or pediatric gastroenterologist will likely recommend an upper endoscopy to confirm the diagnosis. An upper endoscopy can better show the damage to the intestines and is considered the gold standard for diagnosis.
Your child may also need follow-up testing. Because celiac disease can run in families, relatives should also get tested.
If your child tests negative for celiac disease, but you think that they are really having trouble with gluten, talk to your child’s pediatrician about non-celiac gluten sensitivity. Gluten sensitivity causes symptoms similar to celiac disease, but it doesn’t result in intestinal damage. Learn more about gluten sensitivity.
If your child has been diagnosed with celiac disease or non-celiac gluten sensitivity, they’ll need to follow a strict gluten-free diet. Eating gluten-free is the only way kids with celiac disease can stay healthy. There’s no medicine or shot to make it go away.
A gluten-free diet excludes all products containing wheat, barley and rye—luckily, there are lots of delicious foods that are naturally gluten-free! Fresh fruits and vegetables are gluten-free, and so are most meats like chicken and fish. A lot of ice cream is gluten-free, too!
There are also gluten-free versions of your kid’s favorite foods, like gluten-free bread, cereals, pancakes, chicken nuggets and even pizza crust. Just make sure you look for a gluten-free label on the packaging.
Your child may be confused by these changes. Marie-Nathalie Beaudoin, PhD, says, “We usually tell children that everyone has a health limitation because nobody’s body is perfect. Some people wear glasses, others have a body that can’t run very well, and many have foods they don’t tolerate so well…Children with celiac disease are lucky to know about the needs of their body so young, because many people find out when they are adults and have other issues.”
Learn more about the gluten-free diet by reviewing our Guide to the Gluten-Free Diet for Kids.
Having a gluten-free child in school can be stressful and challenging, but there are several things you can do to ensure the success, safety, and happiness of your child for the school year.
Start by reading this article comparing IHPs and 504 plans. The free guide for parents of children with celiac disease also has more information on 504s. It’s also a good idea to brief your child’s teacher on celiac disease and the need to stay gluten-free at the beginning of each school year. They can be your child’s ally in the classroom!
Finally, it’s important to remember that food is social, and gluten-free kids can miss out on the moments their peers take for granted, such as eating a cupcake or pizza to celebrate a classmate’s birthday and trading lunches with a friend in the cafeteria. If this upsets your child, validate their feelings and talk with them about it. Consider sending alternatives to school with them so they can eat the same type of food as their peers.
Beyond Celiac CEO Alice Bast has said, “It’s more than just food. The gluten-free diet really is a lifestyle, so it can affect children’s confidence and their emotional and social health, too.” If your child is struggling to the point that it affects their school life, consider reaching out to the school’s counselor or getting in touch with a pediatric therapist.
Only 10 percent of nearly 224,000 children who had a symptom or condition that should have led to celiac disease testing were actually tested, Beyond Celiac research found.
Studies of both children and adults suggest that highly positive TTG-IgA test results might be enough for a celiac disease diagnosis.
More than half of children with celiac disease did not get recommended blood test follow-ups in a study that used artificial intelligence to scan electronic health records.
You aren’t alone! Millions of children and their parents have been through this before. You can read just a few of these stories below. If you would like to speak with a parent of a child with celiac disease, please reach out to [email protected].
“The doctor was saying, ‘She’s a kid, she’ll grow out of it. Tummy aches are normal.’ I pushed back and said, ‘That’s not enough.’”
“It has been heartbreaking to watch someone I love dearly struggle with celiac disease. It hurts that when he’s in pain, mom and dad can’t take it away!”
“While Jaime had learned to expertly manage the gluten-free diet in the years since her diagnosis, caring for a child with celiac disease was an entirely different experience. ‘We faced many challenges as parents of a child with celiac disease.'”
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