What is celiac disease?

Celiac disease is an autoimmune disorder that causes damage in the small intestine. People with celiac disease respond differently to gluten, a protein found in wheat, rye and barley.

When people with celiac disease eat gluten, it causes an immune system reaction. The body starts to attack and damage 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. People who have celiac disease cannot be treated with medicine or surgery. But their symptoms can be relieved and their bodies can heal if they stop eating foods that contain gluten. It takes effort to adopt this diet, but it is highly effective at managing celiac disease.

Our Celiac Disease Program is dedicated to helping children with celiac disease enjoy healthy, symptom-free lives. In addition to medical care and dietary support, we offer a celiac disease support group.

Celiac disease in children

A person can be diagnosed with celiac disease at any age. Most of our patients are diagnosed between 2 and 15 years of age. Some children begin showing symptoms when they are very young, as early as 6 months to 2 years. This is when children begin eating solid foods, which may contain gluten.

We treat babies, children and young adults up to age 21.

Symptoms of Celiac Disease

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

    • Diarrhea
    • Stomach pain and bloating
    • Constipation
    • Weight loss
    • Vomiting
    • Short stature/failure to gain weight (failure to thrive)
    • Delayed growth and puberty
    • Low red blood cell counts (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 a person has a physical or emotional trauma or stressful event.

  • We do not yet know exactly what causes celiac disease. We do know that people can inherit the risk to develop the disease from a parent. People with a first-degree relative (such as a parent, child or sibling) with celiac disease have an increased risk of developing the condition.

    Although having this gene makes someone more likely to get celiac disease, some people with the gene never develop it. Other genes, as well as factors such as toxins, infections or stress, may also play a role. Celiac disease affects people of all heritages and races. We estimate that 1 in 100 people in the United States have celiac disease. Many may not know or may not have symptoms.

    We don’t yet know why celiac disease starts, but we do know how to manage this illness so your child can heal and thrive.

  • Children with celiac disease don’t get the nutrients they need. Because of this, they may not grow properly, may be tired or may lose weight. If celiac disease is not found in a child and treated, it can lead to serious, long-term health problems, including:

    • Lack of iron, which can lead to low red blood cell counts (anemia). This means less oxygen gets to the cells.
    • 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 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 risks listed earlier.

Diagnosing Celiac Disease

Celiac disease symptoms often look like other digestive conditions. Only a provider can evaluate and diagnose your child with celiac disease.

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
    • 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. The test checks if your child shows high levels of antibodies suggesting celiac disease.
  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 tissue sample of the small intestine. This test, called a biopsy, accurately determines if your child has celiac disease. The procedure used to get this sample is called an endoscopy.

Treating Celiac Disease

Celiac disease can be treated – but not cured – by following a gluten-free eating plan. This means not eating foods with wheat, rye or barley. People with celiac disease need to follow this food plan for life. We believe that with the support we can offer, all children and families can make these changes. We continue to see success stories. Children learn about all the great foods they can eat, and they adapt to new ways of eating. Their bodies heal, and they thrive.

At Seattle Children’s, you and your child will meet with a nutritionist who specializes in working with children. Your nutritionist can help you and your child:

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

    It is important to be aware of what is in the food your child eats and avoid all gluten. Even the smallest amounts, such as crumbs from a cutting board or toaster, can cause damage in the small intestine. Gluten can be found in everything from breakfast cereals to prepared lunchmeats. You and your child will need to read food labels and package ingredient lists very carefully.

    Look for words like “whole grains,” “wheat,” “barley” and “rye.” But also watch for “hidden” sources of gluten such as “hydrolyzed wheat protein,” “durum,” “triticale,” “semolina” and “seitan.” If your child eats food that has gluten (even in the smallest amounts), it can cause damage to their body.

    Gluten is often present in foods that may appear “gluten free.” The following are foods – many that you might not suspect – that contain gluten.

    Foods that can contain wheat

    • Breads
    • Baked goods
    • Soups
    • Pasta
    • Cereals
    • Sauces
    • Salad dressings
    • Roux (gravy or thickening base)

    Foods with rye

    • Rye bread, such as pumpernickel
    • Cereals

    Foods that can contain barley

    • Malt
    • Food coloring
    • Soups
    • Malt vinegar

Celiac Disease Program at Seattle Children’s

Our Celiac Disease Program is dedicated to helping children with celiac disease enjoy healthy, symptom-free lives. Your child’s care team includes doctors, nurse practitioners, registered dietitians, registered nurses, social workers and a psychologist. Whether your child is newly diagnosed or has been living with celiac disease for many years, our caregivers are here to support their move to a gluten-free diet and wellness. Our first priority is to make an accurate diagnosis. From there, we offer the following support and expertise.

  • Celiac disease is fully treatable with a gluten-free diet. We realize this isn’t a quick fix and that support from other families who know what you are going through can make a big difference. The Celiac Disease Program hosts a celiac disease support group 4 times a year at the hospital’s main campus in Seattle.

    The support group welcomes children and families at all stages of experience with celiac disease. A member of the medical team opens with a brief talk. The rest of the meeting is for families to get to know each other and share their struggles and successes and for kids with celiac disease to meet other kids who have it. We welcome all patients, parents, caregivers and siblings affected by celiac disease.

    Please email us to be added to the distribution list or to register.

  • A child who is newly diagnosed with celiac disease can be seen in our celiac clinic within about 2 weeks. At these clinics, you and your child can attend appointments with doctors, dietitians, nurse practitioners and social workers. We hold half-day clinics twice a month – once at Seattle Children’s main campus in Seattle and once at Seattle Children’s Bellevue Clinic and Surgery Center.

    Appointments with individual doctors, nurse practitioners and dietitians are also available outside these formal clinic times for families that need additional options.

    Who is seen at the celiac clinics?

    • A child whose doctor suspects they have celiac disease but the diagnosis is not yet confirmed
    • A child who is newly diagnosed with celiac disease
    • A child who has had celiac disease for some time but is having difficulty maintaining a gluten-free diet
    • A child who has celiac disease and is doing well. We see these patients for a checkup once a year.
    • A child who has been strictly following a gluten-free diet but is not getting relief from symptoms. (It can take several months to a year.) For the small percentage of cases that don’t improve with a gluten-free diet, doctors will partner with immunologists to do further testing. These tests can reveal a different inflammatory process affecting the intestines or a rare form of celiac disease that is resistant to a gluten-free diet.

    Teaching sessions led by doctors and registered dietitians

    A highlight of our twice-monthly clinics is the “new diagnosis” teaching sessions for you, your child and your family. Doctors and nurse practitioners present basic information that you need to know about celiac disease. Dietitians talk about the importance of good nutrition. They also give practical advice on how to make a gluten-free diet work at home, at school and as part of your child’s social and religious life. Our dietitians share recipes and strategies based on their years of experience at Seattle Children’s working with kids who have celiac disease.

    Food plays a big role in our lives, and we know that making changes in the way your child and family eat can be challenging. We help you deal with daily meal planning as well as those tricky situations, such as what to do if your child is at a birthday party where pizza or hamburgers are served. There is also plenty of time for questions and answers after the talks. Because multiple families can attend each teaching session, parents and kids also get to meet and learn from each other.

  • Untreated celiac disease can prevent children from growing properly and cause weight loss. Not treating the disease can also make a child more prone to other illnesses, such as thyroid disease. This, in addition to the pain and discomfort it causes, is why we believe it is so important to diagnose and treat childhood celiac disease.

    We want to be a resource for primary care doctors and pediatricians. We are available to give talks to groups of caregivers and to schools that want to learn more about celiac disease, the importance of treating it and ways children who have the disease can be supported. If you are interested in hosting an educational talk, contact program coordinator Jasmine Rush.

Who is on the Celiac Disease Program team?

Celiac Disease Program caregivers have special training and experience working with children diagnosed with celiac disease. Our team includes:

Dietitians

  • Kim Braly, RDN, CD, CNSC
  • Tran Hang, MS, RDN, CD, CDE
  • Alisha Harmeson, MS, RDN, CD
  • Emily Kurlak, MS, RDN, CD
  • Elena M. Ralph, MPH, RD, CD
  • Heather Twible, RDN, CD
  • Nila Williamson, MPH, RDN, CNSC, IBCLC

Gastroenterologist

Advanced registered nurse practitioner

Registered nurse

  • Rachelle Foreman, RN

Social workers

  • Ilse Gagnaire, MSW
  • Ashley Jarrett, MSW

Psychologist

Lab scientist

Contact Us

To make an appointment with Seattle Children’s Celiac Disease Program, start by asking your child’s primary care doctor or another specialist for a referral. We encourage you to work with your primary care provider or family physician when coming to Seattle Children’s specialists. If you have a referral or would like a second opinion or more information, call 206-987-2521.

If you are a referring physician, read about how to refer a patient.

Scheduling an appointment with the Celiac Disease Program