The Earlier, The Better: How Parents Can Recognize the Symptoms of Childhood Celiac Disease

The following content is created in partnership with Stanford Children’s Health. It does not reflect the work or opinions of the NBC Bay Area editorial staff. Click here to learn more about Stanford Children’s Health.

Approximately 1 in 100 people worldwide and about two and a half million Americans suffer from celiac disease. This autoimmune disorder is hereditary, which means there is a 1 in 10 risk of developing the disease if a first-degree relative—a parent, sibling or offspring—has it.

“Depending on the country or even the state, anywhere between 1 and 80 and 1 in 300 children can be diagnosed with celiac disease,” explains pediatric gastroenterologist Dr. Nasim Sabery Khavari, director of the Celiac Disease Program at the recently inaugurated Center for Pediatric IBD and Celiac Disease at Stanford Children’s Health. "It’s actually one of those illnesses which we’re getting better and better at screening for and diagnosing with time.”

Celiac disease can be tricky to diagnose—especially among children. “Sometimes children have either no symptoms or very few symptoms, like sometimes they can present with what we call short stature, so maybe they’re growing a bit more slowly than what would be expected for their genetics,” says Dr. Khavari. While such cases are harder to diagnose, Khavari explains, some patients present in more conspicuous ways with symptoms like belly pain, constipation, diarrhea, vomiting, or a clear sensitivity to gluten consumption.

Children can exhibit symptoms as soon as gluten-containing foods—like bread, baked goods, cereals, and certain soups—are introduced into their diet. An early diagnosis and treatment of celiac disease helps prevent long-term effects on your child’s health and may also lower the risk of developing other autoimmune conditions.

Whether your child has already been diagnosed with celiac disease, or you suspect they may be suffering from this autoimmune disorder, the following insights on celiac disease will help you better navigate this condition.

What is celiac disease?

Celiac disease is an autoimmune disorder that affects genetically predisposed individuals. People who suffer from celiac disease are gluten intolerant and exhibit an immune response that attacks their small intestine whenever they eat foods that contain gluten. These attacks damage the villi, which are responsible for the body’s nutrient absorption. If celiac disease is left untreated, it can lead to serious health problems like vitamin, mineral and iron deficiencies, and the development of additional autoimmune disorders.

The way these symptoms impact children and adolescents may vary. “You can have primarily gastrointestinal symptoms, such as problems with growth, weight gain, and nutritional deficiencies in general, which is really important for children development, or more subtely extraintestinal symptoms, such as headaches, joint pain.” Dr. Khavari asserts. “There are also some studies that show if you have untreated celiac disease for years, you may be at higher risk for certain types of gastrointestinal cancer in your GI tract as an adult.”

Warning signs

Spotting celiac disease in your child isn’t always easy. Symptoms can vary in severity and duration—they can be experienced within minutes or hours after the consumption of gluten and last only a few hours, days or even weeks.

Some common symptoms that can easily be missed are excessive gas, abdominal pain, and constipation. Celiac disease, however, is experienced differently depending on your child’s age:

• Infants and toddlers: Symptoms are usually more obvious and manifest themselves through vomiting, bloating, irritability, growth inhibitions, malnutrition, or diarrhea with a very strong smell.
• School-age children: While infants and toddlers are more likely to exhibit vomiting, school children with celiac disease are prone to experience stomach aches, abdominal pain, diarrhea, constipation, as well as difficulties with gaining weight or weight loss.
• Older children and teenagers: Symptoms at this age do not often seem to be directly related to the digestive tract. Some warning signs include weight loss, chronic fatigue, constant headaches or migraines, dermatitis, stunted growth, delayed bodily development, bone or joint aches, anemia, unexpected bone fractures, mood disorders or recurring mouth sores.

If celiac disease runs in your family, it is especially important to have your child tested at the very first signs of symptoms. Parents should look out for belly pain, diarrhea, and insufficient weight gain that persists longer than one would expect with a virus, especially if the child is considered at risk or has another autoimmune condition.

“Also, if the child is having a lot of headaches or joint pains and discomfort or certain types of skin rashes, those are some of the other indications that would be worth seeing the pediatrician for, in order to get tested,” Dr. Khavari adds.

Three ways to confirm a diagnosis

The first step in diagnosing celiac disease is a review of your child’s symptoms, as well as their patient history and a physical exam. Afterwards, there are three ways to confirm the final diagnosis:

1. Blood testing: In case your child is still on a diet that contains gluten, blood testing can be used as a method to test for celiac disease. If your child does have celiac disease, a higher level of antibodies will often show up in the blood test.
2. Genetic testing: Rather than confirming that your child has celiac disease, this method serves to determine how susceptible a person may be. Keep in mind that a large percentage of the population carries the genes for celiac disease without developing symptoms or the disease.
3. An endoscopy: Done under anesthesia, medical professionals insert an endoscope, a small camera with a light at the end, into your child’s mouth and move it down the throat into the esophagus, the stomach, and the small intestine. By capturing photos and videos and taking small tissue samples, your child’s gastrointestinal health can be examined. The samples are sent to a lab to get tested for celiac disease and other gastrointestinal conditions. For the endoscopy to produce reliable results, your child needs to consume gluten regularly during the four to six weeks prior to the exam.

Treating celiac disease

Thankfully, there is a proven way to treat celiac disease: A life-long gluten-free diet. Children and teenagers typically respond very well to this dietary change and feel significantly better in a matter of a few weeks. In most cases they can attain a normal height, weight, and bone health once they switch to a gluten-free meal plan.

While the ability to treat celiac disease without medication has major benefits, especially not needing prescriptions and no side effects, Dr. Khavari notes the important implications of a condition requiring such an important lifestyle change. “Diet is such a part of our lives and we’re all very much social beings and food is something that I think we all interact with multiple times a day just being human and then, it’s often a social interaction.” Fortunately, organizations like Stanford Children’s Health provide the support parents and children may need to navigate these lifestyle adjustments. “Celiac centers have team that includes dieticians, psychologists and social workers, as well as other experts that can help people learn how to navigate their diagnosis”.

Implementing a drastic lifestyle change, such as a strict gluten-free diet, can be difficult. Consider encouraging the whole family to adhere to this new diet, this way there will be fewer temptations at home that could jeopardize your child’s meal plan. Additionally, it’s important to remember that natural fruits and vegetables do not contain gluten. While shopping for processed foods may require some new adjustments, the local produce section is abundant with whole foods and other natural gluten substitutes that parents can shop for, worry-free.  

Once they start a strictly gluten-free diet, it can take your child’s body between six months and two years to fully improve its intestinal health. The earlier you recognize your child’s symptoms and schedule testing, the easier treatment and the prevention of connected health issues become.

Stanford Children’s Health’s gastroenterology and celiac disease team is here to help you diagnose celiac disease in your child and help you navigate the diagnosis. Click here to learn more about their new Center for Pediatric IBD and Celiac Disease that combines innovative, multi-disciplinary care with the latest research to ensure your child’s health and wellness.