Digestive and Gastrointestinal Conditions

Celiac Disease

What is celiac disease?

Celiac (pronounced SEAL-ee-ACK) disease is an autoimmune disorder that causes damage in the small intestine of the digestive system. When someone with celiac disease eats gluten (a protein found in wheat, rye, barley and triticale [a wheat and rye hybrid]), it causes an immune system reaction. The body starts to attack and destroy the villi (very small, finger-like projections in the small intestine). Without villi, the body cannot absorb vitamins, minerals and other nutrients from food.

Celiac disease is an ongoing (chronic) illness that cannot be treated with medicine or surgery. It can only be managed by getting rid of all gluten in the diet and not eating foods that contain gluten.

Celiac Disease at Seattle Children’s

Our team works to make sure your child can simply be a kid — not a sick kid. Our first priority is to make an accurate diagnosis. From there, we offer nutritional education and support and provide the ongoing care your child needs to be healthy and live a normal life with celiac disease.

  • Celiac disease is a different kind of medical condition. Unlike many other medical problems, celiac disease is a chronic illness that cannot be treated with medicine or surgery. The only way to treat celiac disease is to eliminate gluten in the diet and eat and drink only gluten-free foods.

    Food plays a major role in our lives. Many families have lifestyle preferences, cultural practices and religious beliefs that may make it challenging to move to a gluten-free diet.

    At Seattle Children’s, we work with your child and your family to move to a gluten-free diet in a way that works for your unique lifestyle. Our nutritionists listen to your concerns, answer your questions and offer recommendations that allow your child and family to continue enjoying food and life.

  • Our doctors are board certified in pediatric gastroenterology, and our advanced practice providers (nurse practitioners and physician assistants) are trained in pediatric care. Our providers are some of the top experts in diagnosing and treating celiac disease in children. In fact, U.S. News & World Report ranked Seattle Children’s Gastroenterology Program as one of the best in the country in 2016. We stay informed of the latest clinical research on celiac disease and constantly strive to find new ways to help children with this condition heal faster and live a normal life. This is our priority and commitment to your child and family.

    Everyone at Seattle Children’s got into medicine to help your child feel better — and we are here to support your child and family every step of the way. From the lab staff who draw your child’s blood to the gastroenterologists who perform diagnostic procedures, our providers are specially trained to care for children. We work together to help your child heal and feel better.

  • Your child may develop celiac disease at any time in their life. Our team of providers, nurses and nutritionists are trained to treat children of all ages, from infants to young adults. We will help your child learn about what they can and cannot eat using language and hands-on demonstrations that they can understand.

  • A team of doctors, nurse practitioners, physician assistants, nutritionists and child life specialists work together closely with your family to help your child transition to a gluten-free diet as easily as possible. Because celiac disease is a lifelong illness that has to be managed by changing your child’s diet, we are always here to provide your child and family with the information, resources and physical and emotional support you need to maintain a gluten-free lifestyle.

Celiac Disease in Children

A person can be diagnosed with celiac disease at any age. It is not uncommon for a child to begin showing symptoms at an early age, sometimes as early as 6 months to 2 years. This is when children begin eating solid foods, including foods with gluten. At Seattle Children’s, we treat children of all ages, although most of our patients are diagnosed between 2 and 15 years of age.

Symptoms of Celiac Disease

Not everyone with celiac disease will have symptoms. People who do have symptoms often confuse them with other intestinal disorders, such as irritable bowel syndrome or lactose intolerance.

The most common symptoms in children are:

  • Diarrhea
  • Stomach pain and bloating
  • Constipation
  • Weight loss
  • Vomiting
  • Short stature/failure to gain weight (failure to thrive)
  • Delayed growth and puberty
  • Lack of iron in the blood (anemia)
  • Feeling tired
  • Skin rashes (known as dermatitis herpetiformis) and mouth sores
  • Problems with the enamel of the permanent teeth
  • Feeling irritable

Sometimes, celiac disease symptoms do not show up until the person has a physical or emotional trauma or stressful event.

  • We do not yet know exactly what causes celiac disease. However, we do know that people with celiac disease inherit the gene for it from a parent. People with a first-degree relative (such as a parent, child or sibling) with celiac disease have a 3- to 10-fold increased risk of developing the condition. An estimated 1 in 133 people in the United States have celiac disease, although many may not know or have symptoms.

    Although having this gene makes someone more likely to develop celiac disease, some people with the gene never develop it. Other genes, as well as environmental factors such as toxins, infections or stress, may also play a role. Celiac disease affects people of all heritages and races.

    Although we don’t yet know why celiac disease starts, we do know how to manage this illness so your child can heal and live as normal a childhood as possible.

  • Because they are not getting the nutrients they need, children with celiac disease may not grow properly, may be tired or may lose weight. If celiac disease is not treated, it can lead to serious, long-term health problems, including:

    • Lack of iron in the blood (anemia)
    • Early development of brittle bones (osteoporosis) or low-bone density (osteopenia)
    • Short stature
    • Teeth enamel defects
    • Thyroid problems
    • Arthritis
    • Inability to get pregnant (infertility) and miscarriage
    • Lactose intolerance (cannot digest the natural sugar in milk)
    • Inability to absorb enough vitamins and minerals
    • Inability to properly digest food due to lack of stomach enzymes (pancreatic insufficiency)
    • Cancers in the stomach and other organs of the gastrointestinal system (esophagus, small and large intestine and rectum)
    • Conditions of the brain and nervous system (such as epilepsy and migraines)

    When people develop celiac disease at a later age, there is a greater risk of developing other autoimmune conditions and related health problems. Although some people do not have symptoms, they may still have the health conditions and damage listed earlier.

Diagnosing Celiac Disease

Because celiac disease symptoms often look like other digestive conditions, only a provider can evaluate and diagnose your child with this condition.

To determine if your child has celiac disease, your Seattle Children’s provider will:

  1. Ask questions: The provider will ask you and your child questions about your child’s past health, any symptoms, your family’s health, any medicines your child is taking, any allergies and any other concerns you have about your child’s health.
  2. Do blood work: If the provider thinks your child may have celiac disease, they will order a blood test to check if your child shows high levels of antibodies to gluten.
  3. Do an endoscopy: If the results of the blood test show that your child has a high level of antibodies to other proteins in the intestinal lining, the provider may recommend testing a sample of tissue (called a biopsy) of the small intestine to determine accurately if your child has celiac disease. The procedure used to get this sample of the intestine is called an endoscopy.

Treating Celiac Disease

There is no cure for celiac disease. The only way to treat it is to follow a gluten-free diet, which means not eating foods with wheat, rye, barley or triticale (a wheat and rye hybrid). People with celiac disease need to follow this diet for life.

It is important to be very careful to avoid all gluten. Even the smallest amounts, such as crumbs from a cutting board or toaster, can cause damage in the small intestine.

At Seattle Children’s, children and their families meet with a nutritionist. They will learn how to follow a gluten-free diet and manage their nutrition to repair their small intestine and enhance their health.

  • Gluten is a protein found in wheat, rye, barley and triticale. It acts like glue that holds foods together.

    Because gluten can be found in everything from breakfast cereals to prepared lunchmeats, it is very important to be aware of what is in the food your child eats. You and your child will need to read food labels and package ingredient lists very carefully. If your child eats food that has gluten (even in the smallest amounts), it can cause damage to your child’s body.

    Because gluten is often hidden in foods that may appear “gluten free,” it is important to understand how and where wheat, rye, barley and triticale may appear in foods, especially packaged and processed foods. The following are foods — many that you may not suspect — that contain gluten.

    Foods with wheat

    • Breads
    • Baked goods
    • Soups
    • Pasta
    • Cereals
    • Sauces
    • Salad dressings
    • Roux

    Foods with rye

    • Rye bread, such as pumpernickel
    • Rye beer
    • Cereals

    Foods with barley

    • Malt
    • Food coloring
    • Soups
    • Malt vinegar
    • Beer

  • The only way to treat celiac disease is to get rid of all gluten from the diet and eat only foods that do not have gluten. In order to be healthy, your child will have to eat gluten-free foods for the rest of their life.

    We understand that food plays a big role in many of our lives, and making changes in the way your child and family eat can be challenging. Many families have lifestyle preferences, cultural practices and religious beliefs that may make it hard to move to a gluten-free diet. That’s why our knowledgeable and compassionate nutritionists meet with your child and family immediately after your child is diagnosed with celiac disease.

    Our nutritionists can teach you and your child how to make gluten-free food choices, plan and cook gluten-free meals, reverse nutritional deficits in the diet and heal the small intestine.

    We will listen to your concerns, answer your questions and offer recommendations that allow your child and family to continue enjoying food and life. We’ll help you deal with all of those tricky situations in childhood, such as what to do if your child is at a birthday party where pizza or hamburgers are served.

Contact Us

Contact the Seattle Children’s Gastroenterology and Hepatology Department at 206-987-2521 for a referral, a second opinion or more information.