Celiac Disease and Children
Introduction
Are you a parent or caregiver of a child who is diagnosed with celiac disease? Did your child’s pediatrician advise you to put your kid on a gluten-free diet? Maybe you think your child could have celiac disease and are looking for answers. You’re in the right place for learning how to care for a child with celiac disease! 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 way to manage 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 providing them with food they can safely eat. This may seem like an overwhelming challenge but you are taking the right steps by learning how best to support your child.
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).
Common celiac disease symptoms in kids include:
- Anemia
- Canker sores
- Chronic diarrhea or constipation
- Damaged or discolored tooth enamel
- Decreased appetite
- Failure to thrive/delayed growth or puberty
- Fatigue
- Being underweight or overweight
- Distended abdomen, ie a swollen belly or a protruding “potbelly”
- Short stature
- Vomiting
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, biological 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.
“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.”
– Marie-Nathalie Beaudoin, PhD
Learn more about the gluten-free diet by reviewing the Guide to the Gluten-Free Diet for Kids.
How Will My Child Stay Gluten-Free at School?
Having a gluten-free child in school (or any group setting) can be stressful and challenging, but there are several things you can do to ensure the success, safety, and happiness of your child at school.
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 for a gluten-free diet at the beginning of each school year. They can be your child’s ally in the classroom!
When building your child’s support team, 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 so they can eat the same type of food as their peers.
Beyond Celiac Founder 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.
