“No need to be worried, you're in good hands. There are tons of celiac kids.”

– Olivia, age 7

What is Celiac Disease?

Celiac disease (CD) is a genetic autoimmune condition affecting the intestine when gluten is ingested. Gluten is a group of proteins found in wheat, rye and barley. When someone with CD eats gluten, the finger-like projections that line the walls of the small intestine known as villi become flattened and unable to absorb food and nutrients properly.

The treatment for CD is a strict gluten-free diet.

What is Non-Celiac Gluten Sensitivity?

People with non-celiac gluten sensitivity (NCGS) experience symptoms that are similar to those with CD. However, there is minimal to no damage to intestinal villi. There is no test to diagnose NCGS. A diagnosis of NCGS can be made after CD and a wheat allergy have been ruled out.

The treatment for NCGS is a gluten-free diet.

What is Dermatitis Herpetiformis?

Dermatitis herpetiformis (DH) is a bumpy, itchy skin rash that is associated with celiac disease. In almost all cases, the small intestine of a person with DH is also damaged to some extent by exposure to gluten. DH is diagnosed via skin biopsy by a dermatologist.

The treatment for dermatitis herpetiformis is a strict gluten-free diet.

Educate – Advocate – Empower

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:

  • Anxiety
  • Constipation
  • Crankiness
  • Delayed Puberty
  • Diarrhea
  • Difficulty concentrating

 

  • Distended abdomen
  • Failure to thrive
  • Irritability
  • Personality changes
  • Poor growth
  • Poor memory

 

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.

How ROCK Can Help

With the growth of celiac disease diagnoses in children, it is clear that parents, kids and their families need a reliable educational program. Celiac disease is managed solely via a strict gluten-free diet, which can be extremely challenging in a world filled with foods containing gluten.

The ROCK program provides education and support along with age-appropriate educational tools and advocacy training. Some features of the ROCK program include:

  • Local support groups and meet-up events
  • Phone helpline available each weekday
  • A course for caregivers that explains celiac disease, the gluten-free diet and the gluten-free lifestyle in three easy steps (coming soon)
  • A teen blog about living gluten-free (coming soon)
  • Downloadable educational materials for families and clinicians
  • This educational website covering many relevant topics, including:

– how to manage at school, parties and holidays,
– finding gluten-free camps
– how to meet challenges specific to dating and attending college

History

Founded in 1991 by Danna Korn in San Diego, ROCK quickly grew to support many celiac families via local meet-up groups in communities across the nation. The National Celiac Association is proud to welcome the well-respected ROCK program to our advocacy organization.

Become a ROCK star

Click here to connect
with others in your area.

Attend a ROCK event

Events range from local
meet ups for support to
events for all people living a
gluten-free lifestyle.

How You Can Help!

The National Celiac Association is a 501(c) 3 non-profit organization dedicated to educating and advocating for individuals with celiac disease and non-celiac gluten sensitivities, their families, and communities throughout the nation.

Donate Now!

Help us help kids!  Donations are critical to the quality of our programs and keep us ROCKING! Thank you!

Learn More >

Start Your Own ROCK Group

Don’t have a ROCK group near you? Start your own!

Learn More >

Free Newsletter

Stay up-to-date on what is happening at NCA and ROCK, get recipes, tips and the latest research on celiac disease.

Learn More >

Support Our Sponsors!

The National Celiac Association appreciates our sponsor support and encourages you to consider purchasing their products.