Celiac Disease Diagnosis and Treatment

At Stanford Medicine Children’s Health, we put patients with celiac disease and their families at the center of our care. We use the very latest technology for diagnosing, and we give children with celiac disease the opportunity to access advanced, evidence-based care. We take a well-rounded, holistic approach to treating celiac disease, ensuring that your child receives not just top-notch medical care, but also the emotional, social, and school support they need to live their best life. We meet families where they are, including offering telehealth visits.

How we diagnose celiac disease

Testing for celiac disease usually includes a combination of history and physical exam (clinic appointment) with a thorough review of your child’s symptoms. To complete our diagnosis, we perform one or more of the following tests.

Endoscopy

An upper endoscopy with biopsy is our first choice and the gold standard for diagnosing and confirming celiac disease. In an endoscopy, we use an endoscope to view your child’s upper gastrointestinal tract to look for inflammation and disease.

• The endoscope is equipped with a high-tech tool that enables our physicians—pediatric gastroenterologists with a specialty in celiac disease—to take biopsies (small tissue samples), which are then sent to the lab to confirm celiac disease (or another gastrointestinal condition that causes inflammation).
• We take several biopsies throughout the upper gastrointestinal tract to ensure accurate results. The procedure is completed in a child-friendly setting that promotes calm through immersive entertainment, with pediatric-trained anesthesiologists for the utmost safety.
• Endoscopy for celiac disease requires gluten ingestion prior to the procedure. Your child will need to regularly ingest gluten approximately four to six weeks prior to avoid a false negative. Please let us know if your child becomes sick during this time.

Occasionally, we will follow an upper endoscopy with a capsule endoscopy. The capsule endoscopy is not used to diagnose celiac disease. Rather, it’s used to show the full extent of celiac disease throughout the entire small intestine. A large pill-shaped capsule is swallowed by your child and tracked for a few hours before it is naturally expelled. This easy, minimally invasive tool contains a micro-camera that sends video clips and high-definition photos to a device worn on your child’s belt.

Blood testing

If your child is still actively eating gluten, we can use blood testing to detect antibodies (proteins in the blood that respond to foreign substances) for the diagnosis of celiac disease. People with celiac disease have higher levels of antibodies in their blood than those without celiac. We also follow these antibodies closely after the diagnosis of celiac disease.

Some of the antibodies we may test for in diagnosing your child would include:

• Tissue transglutaminase IgA and immunoglobulin A level.
• Endomysial antibody.
• Anti-deamidated gliadin peptide.

Please note that blood testing is less accurate if you are already on a gluten-free diet.

Genetic testing

Genetic testing can be helpful, although it is important to know that a large percentage of the population has the genes for celiac disease without actual signs of the disease. That said, genetic testing can confirm that one is truly susceptible to celiac.

Treatment for celiac disease

Celiac disease treatment is lifelong adherence to a healthy gluten-free diet, which we go above and beyond to help your child adopt. We also track your child’s nutritional health through regular laboratory work to maintain proper nutrient levels—e.g., vitamin D, iron—and close monitoring of your child’s height and weight to ensure proper growth.

Often, adherence to a strict gluten-free diet is all that is necessary to treat celiac disease. It usually takes six months to two years for a child’s intestines to fully improve after strict adherence to a gluten-free diet. It is a process to implement this lifestyle change into your family’s lives, and we are here to help. It is often safer, more beneficial, and supportive when the entire family understands and puts into practice the elimination of gluten cross-contamination throughout the home.

A key to our celiac disease treatment is meeting with our registered dietitians who are experts in the gluten-free diet, and who deeply understand your child’s special nutritional needs. They also help your child develop healthy eating habits.

Some of the important topics that our registered dietitians will discuss with your family:

• How much gluten is too much on a gluten-free diet?
• Can gluten be found in products other than food?
• Multivitamins and medications—are they gluten-free?
• Overall nutritional intake and fiber needs when subscribed to a gluten-free diet.
• Type 1 diabetes and the connection to celiac disease.
• Guide for the gluten-free diet.

Do all people respond to gluten-free diets?

The majority of children diagnosed with celiac disease respond well to a gluten-free diet. In some cases, however, a lack of response can occur due to your child inadvertently consuming gluten, most likely due to cross-contamination (shared toaster at home, shared fryer at a restaurant, etc.). Gluten can be found in many non-food products, as well. If your child does not respond fully to a gluten-free diet, we help reexamine your child’s dietary habits and your lifestyle habits to uncover where gluten contamination is still taking place.

Note: In August of 2013, the U.S. Food and Drug Administration (FDA) issued a regulation that defines the term “gluten-free” for food labeling. Learn more about the “gluten-free” regulation.