Celiac Disease and Children
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.
What is 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.
What are the Symptoms of Celiac Disease in Children?
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). Although celiac disease is often thought of as a digestive disease, only 20-30% of kids with celiac disease will have stomach symptoms.
Common celiac disease symptoms in kids include:
- Canker sores
- Chronic diarrhea or constipation
- Damaged or discolored tooth enamel
- Decreased appetite
- Failure to thrive/delayed growth or puberty
- Obesity or excess weight
- Distended abdomen, ie a swollen belly or a protruding “potbelly”
- Short stature
How Do Kids Get Tested for Celiac Disease?
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 the Celiac Disease Test is Positive
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 the Celiac Disease Test is Negative
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.
What is the Gluten-Free Diet?
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.
How Will My Child Stay Gluten-Free at School?
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.
What’s the Latest Research on Pediatric Celiac Disease?
If a child at risk for celiac disease is prescribed antibiotics multiple times, it may increase the chance that celiac disease will develop, according to a new study. Antibiotics were tied to an increase in a protein that loosens the connection between cells in the intestine. In the future, tests for that protein might be used to determine who is likely to develop celiac disease.
A recent study found that children who had detectable gluten in urine and stool samples did not have symptoms, backing up earlier evidence that symptoms are not reliable indicators of gluten getting into the gluten-free diet.
Children who were diagnosed with celiac disease as part of a mass screening program had improved symptoms, quality of life and iron levels one year later, according to research presented at Digestive Disease Week (DDW).
View All Research News
Read Diagnosis Stories from Parents of Kids with Celiac Disease
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.'”