Celiac Disease Fact Sheet

Celiac disease and non-celiac gluten sensitivity are common:

• About 21 million people in the United States have either celiac disease (CD) or non-celiac gluten sensitivity (NCGS).
• About one percent of the U.S. population has CD, or about 3 million people.
• About six percent have NCGS, or about 18 million people.
• If immediate relatives (mom, dad, or a sibling) have celiac disease, one in 22 people will also share the condition.
• If next-level relatives (such as an aunt, uncle or cousin) have celiac disease, one in 39 people will also share the condition.
• The average age of diagnosis is seven years old among the U.S. child population.
• Untreated CD increases the risk of certain cancers by 200 to 300 percent.

Symptoms & Complications

The more than 200 symptoms of celiac disease can vary widely and may appear at any age. Even people who are asymptomatic, or report no symptoms of celiac disease, may experience serious complications such as anemia or osteoporosis unless they closely follow a gluten-free diet.

Some of the more common symptoms in children are:

Diagnosing Celiac Disease

The major steps taken to diagnose celiac disease are listed below. Please do not start your child on a gluten-free diet without first confirming a celiac disease diagnosis with a doctor. If testing is done after a gluten-free diet is started, antibody levels in the blood can normalize, the small intestine may heal, and your doctor will be unable to make an accurate diagnosis.

Steps for diagnosis:

• A thorough physical examination and information collection, including family history
• Blood tests, to include a celiac panel, and:
  • Tissue transglutaminase antibodies (tTG-IgA)
  • Total serum IgA (immunoglobin A)
  • AGA IgA and IgG (antigliadin antibodies)
• Other available tests include:
  • EMA (Endomysial antibody) or DGP IgA
  • IgG (Deaminated Gliadin Peptide)
  • An upper endoscopy with a biopsy of the small intestine (which is considered the gold standard for diagnosis)
  • For those with suspected dermatitis herpetiformis, skin biopsies are indicated
  • Because celiac disease is genetic, it is recommended that immediate family members be tested as well

Treatment - The GF Diet

At present, there is no cure or medication available for celiac disease. The only treatment is a strict gluten-free diet. Only complete avoidance of gluten results in the healing of the damaged intestine and overall improved health in celiac disease. Some people may also need treatment for vitamin and/or mineral deficiencies upon diagnosis.

NOTE: Please do not start a gluten-free diet without first confirming the diagnosis of celiac disease, non-celiac gluten sensitivity or dermatitis herpetiformis with your doctor. A celiac disease diagnosis is based on blood tests and a biopsy of the small intestine. If testing is done AFTER a gluten-free diet is started, blood tests can normalize, the small intestine may heal, and your doctor will be unable to make an accurate diagnosis.