Celiac disease impacts millions of people around the world. According to the NIH, experts estimate that around 2 million people in the United States have celiac disease – but only 30 percent of people are properly diagnosed, according to the Celiac Disease Foundation. 
One Italian study recently found twice the number of celiac disease cases among children ages 5-11, compared to a study that was done 25 years ago . With the increased prevalence of celiac disease, understanding your child’s individual risk is more important than ever.
For many parents, worrying about their child’s diagnosis (or lack of diagnosis) can become all-consuming. What if your child is asymptomatic or showing negative on an antibody test? What if the common “stomach ache” isn’t just that? Could celiac disease be the culprit behind your child’s behavior?
Getting to the root of your child’s unexplained symptoms can be challenging – but you don’t have to stay in the dark. Here’s what you need to know about celiac disease and kids, and what you can do to get answers.
What causes celiac disease in children?
Celiac disease is a health condition where the body’s immune system reacts to gluten once it’s ingested. With celiac disease, the body’s immune system treats gluten like a foreign invader, which triggers the immune system to respond. This can lead to damage to the small intestine and has the potential to cause nutrient deficiencies, anemia, and other serious health conditions.
Celiac disease can develop at any age after gluten consumption begins. Researchers believe there may be two peaks for the onset of celiac disease – the first peak occurs after gluten intake within the first 2 years of life, and the second peak has been seen in the second or third decade of life.
Three elements are necessary for celiac disease to occur:
- Inherited HLA genes, specifically the HLA-DQ2 or HLA-DQ8 genes associated with celiac disease. These genes are tested with an easy mouth swab in the Celiac Risk Gene Test. If your child does not have any of these genetic markers, then it is highly unlikely (>99%) that he or she has or will get celiac disease.
- A diet that includes gluten. Celiac disease cannot develop without exposure to gluten from your diet. Gluten is a protein found in many grains, including wheat, barley, and rye. Common foods that contain gluten include cereal, pasta, sauces, baked goods, dressings, meat substitutes, chips, energy bars, soup, crackers, and candy.
- An environmental trigger such as an infection, a leaky gut, use of antibiotics, or an unhealthy diet. Any of these triggers may weaken and damage the small intestine. The damage allows gluten particles to pass through the cells of the intestinal lining. This causes the immune system to attack the small intestine, resulting in the activation of celiac disease.
If your child has all three of these factors, it’s possible for them to develop celiac disease.
Symptoms of celiac disease in children
Celiac disease can look extremely different in each child depending on their age Some of the most common signs of celiac disease in children are related to the gastrointestinal system, including:
- Tummy aches
Because these gastrointestinal symptoms can look similar to other conditions such as irritable bowel syndrome, many children with celiac disease can be misdiagnosed at first.
Other symptoms of celiac disease in kids that are unrelated to the gastrointestinal system include:
- Behavioral or mood issues
- Low appetite
- Weight loss
- Poor growth
Symptoms for celiac disease can also present differently in adults versus in children, as demonstrated in figure 1.
Figure 1 - Symptoms associated with celiac disease in adults and children.
Is celiac disease the same as a food allergy?
Celiac disease isn’t a food allergy – it’s an autoimmune condition where eating gluten triggers the immune system to attack the small intestine.
An allergic reaction is usually temporary, and a wheat allergy typically doesn’t cause long-term damage unless it causes a very serious allergic reaction called anaphylaxis. Children can also outgrow a wheat allergy, while celiac disease is a lifelong condition.
Celiac disease is not the same as gluten intolerance or gluten sensitivity. While gluten intolerance can include similar gastrointestinal symptoms, gluten intolerance typically doesn’t cause long-term damage to the intestines.
What is the best treatment for celiac disease in children?
Celiac disease can be treated by switching your child to a completely gluten-free diet. While they’ll need to be on this diet for the rest of their lives, a gluten-free diet will allow your child’s intestines to heal. It can also eliminate most symptoms, with some children experiencing relief in as little as two weeks, according to the Celiac Disease Foundation. 
How can my child get a celiac disease diagnosis?
Doctors typically diagnose children with celiac disease through blood testing for antibodies or biopsies. Blood is drawn to test for gluten-triggered antibodies called tissue transglutaminase antibodies (tTG-IgA), but this testing requires that your child eat gluten for the test to be accurate. Another challenge with an antibody test is that gluten antibodies can often only be detected at later stages of celiac disease progression. By this point, your child may have been experiencing pain and discomfort for years before receiving a proper diagnosis.
A biopsy can diagnose celiac disease at both early and later stages. Like antibody testing, a gluten-containing diet is needed for accurate biopsy results. The "gold standard" or best way to diagnose celiac disease is with a biopsy.
The later the age of diagnosis, the greater likelihood the child could develop other autoimmune conditions, as demonstrated in Figure 2.
Figure 2 - Celiac disease diagnosis age and the chance of developing another autoimmune disorder.
While these are the only ways to officially receive a celiac disease diagnosis, a simple at-home genetic test can help you know if your child has the genes that put them at risk. The Celiac Risk Gene Test just requires a simple cheek swab before shipping it back to the lab. And, it’s available for children ages 2 and up. If your child tests negative for the genes, it can rule out (>99%) the likelihood of them having celiac disease or ever developing it during their life.
By being aware of the symptoms of celiac disease in kids and understanding your testing options, you can get answers and take action to help your child feel their best.
 “What is Celiac Disease?” Celiac Disease Foundation. https://celiac.org/about-celiac-disease/what-is-celiac-disease/.
 Gatti, Simona, et al. “Increased Prevalence of Celiac Disease in School-Age Children in Italy.” Clinical Gastroenterology and Hepatology, vol. 18, no. 3, Mar. 2020, pp. 596–603., doi:10.1016/j.cgh.2019.06.013.
 Fasano A. Celiac disease--how to handle a clinical chameleon. N Engl J Med. 2003;348:2568–2570.
 Hoffenberg, Edward Joel. “Celiac Disease in Children.” Celiac Disease Foundation, Celiac Disease Foundation, celiac.org/about-celiac-disease/celiac-disease-in-children/.