Center for Celiac Disease

All About Celiac Disease 

Celiac disease is one of the most common genetic conditions in the world, affecting 1 in every 133 people. People with celiac disease can not properly digest gluten, which is found in wheat, rye and barley.

Celiac disease is not an allergy. It is an autoimmune disorder. Individuals can not "grow out" of celiac disease as they may a wheat allergy.

When a person with celiac disease eats gluten, the villi (tiny finger-like projections in the small intestine that absorb nutrients from food) are damaged. Damaged villi do not effectively absorb nutrients — such as proteins, vitamins, minerals, carbohydrates and fats — from food.

If left untreated, celiac disease can cause chronic and life-threatening damage to the small intestine and lead to an increased risk of other nutritional and immune-related disorders.

Celiac disease requires life-long treatment.

Cause of celiac disease 

It is not known what causes celiac disease. Researchers have determined there is a genetic component to the disease. A person with celiac disease has an increased chance their children or siblings will also have the disease. If one identical twin has celiac disease, there is a 70 percent chance the remaining twin will also have the disease.

Family members who have autoimmune disorders are also at an increased risk of developing celiac disease.

Experts at the Center for Celiac Disease at CHOP strongly suggest testing all family members when one has been diagnosed with celiac disease, even if the siblings or other family members show no symptoms.

Symptoms of celiac disease

Celiac disease is a multi-symptom, multi-system disorder. The symptoms can vary greatly and are not always gastrointestinal in nature. Celiac disease can appear at any time in a person's life — from early childhood to late adulthood.

These are some common symptoms of celiac disease in children and adolescents:

  • Poor growth
  • Weight loss
  • Short stature
  • Delayed puberty
  • Diarrhea
  • Constipation
  • Poor appetite
  • Food aversion
  • Behavior changes
  • Dental enamel defects
  • Iron deficiency anemia or other vitamin or mineral deficiencies
  • Gas
  • Skin disorders that produce small itchy blisters on the elbow, feet or knees
  • Vomiting
  • Irritability
  • Bloated abdomen or “potbelly”
  • Fatigue
  • Osteoporosis or multiple fractures
  • Headaches 

Some people will experience no symptoms.

Diagnosing celiac disease

At the Center for Celiac Disease, part of the Division of Gastroenterology, Hepatology and Nutrition, clinical experts use a variety of diagnostic tests to diagnose celiac disease, including blood tests, endoscopy and biopsy.

Blood tests can help diagnose and manage celiac disease. Some children may not have symptoms and are only identified with the disease through a screening blood test.

Blood tests for celiac disease look for antibodies showing the immune system's response to the gluten in your child’s diet. It’s important your child needs to continue eating gluten when being tested. If your child is not eating gluten at the time of testing, his or her immune system won't be producing antibodies for the blood tests to identify.

Your child will receive one or more of the following blood tests if celiac disease is suspected:

If your child’s test results are positive, an upper gastrointestinal endoscopy (EGD) will likely be performed to confirm the diagnosis of celiac disease.

During this diagnostic test, a small tissue sample will be taken from your child’s small bowel, and then tested. This is called a biopsy. If the tissue looks inflamed and damaged when examined under a microscope, celiac disease is confirmed.

Treating celiac disease

At this time, there is no cure for celiac disease. It is a life-long condition and requires long-term treatment.

Eliminating gluten from your child’s diet will improve symptoms of celiac disease. When gluten is completely removed from your child’s diet, the lining of the small intestine will heal.

Changing your child’s food habits to eliminate foods containing gluten — such as wheat, rye, oats and barley — from their diet can be challenging. Some children will also need to restrict products with lactose — such as milk — for a period of time.

To help you better understand what your child can safely eat, we encourage you to make an appointment with a registered dietitian at The Center for Celiac Disease. Our dietitians will discuss eliminating certain grains from your child’s diet and how to maintain a balanced, nutritious diet for your child.

Complications of celiac disease

If your child complies with a gluten-free diet, chances are good that he or she will avoid the potential complications of celiac disease.

Children who go undiagnosed, untreated or who consciously continue eating gluten may experience significant long-term complications of celiac disease including:

  • Anemia
  • Depression
  • Gallbladder malfunction
  • Increased risk of hemorrhage
  • Intestinal lymphomas and other GI cancers
  • Juvenile-onset diabetes
  • Nervous system disorders
  • Nutritional deficiencies
  • Osteoporosis
  • Pancreatic insufficiency
  • Thyroid disease

Long-term follow-up care

After your initial visit and education session, you will likely be asked to come back in three months, six months, and 12 months. Yearly follow-ups are recommended after that with the gastroenterologist and nurse practitioner.

At each follow-up visit your doctor and nurse practitioner will monitor your child’s weight and height. They may also order blood tests. Blood tests can help us know if your child is following the gluten-free diet or to identify if there is unknown gluten in your child’s diet.

Your doctor may also refer you to other members of the Celiac Center team, such as a dietitian or psychologist.

Contact us

For more information or to make an appointment with the Center for Celiac Disease at CHOP, call 215-590-3076.

 

Reviewed by: Center for Celiac Disease team
Date: February 2013

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