Celiac Disease Diagnosis and Treatment

How to make a celiac disease diagnosis

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, while your child is asleep, an endoscope (a small camera the size of a pen with a light on the end) is placed into your child’s mouth. It is then carefully moved down the throat into the esophagus, stomach, and small intestine. In this quick, short procedure, our doctors use the latest technology to produce high-definition photos and video that clearly show the health of your child’s upper GI tract.

More important, 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). When performing an endoscopy for celiac disease, we take several biopsies throughout the upper GI 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 is very similar to general endoscopy, except that it requires gluten ingestion prior to the procedure. Without gluten in your child’s system, the test loses accuracy. Your child will need to regularly ingest gluten approximately four to six weeks prior to the test to avoid a false negative meaning the test shows no celiac disease when in fact there is celiac disease. We do not want to make your child uncomfortable, so 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 small intestine, since the endoscope only reaches the top part of the small intestine. A large pill-shaped capsule is swallowed by your child and tracked for eight 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. It works best for older children who can swallow a large pill.

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 life-long adherence to a gluten-free diet.

In the majority of cases, adherence to a strict gluten-free diet is all that is necessary to treat celiac disease. It usually takes between 6 months and 2 years for most people’s intestines to fully improve after strict adherence to a gluten-free diet. It is a process to implement this lifestyle change into peoples’ lives, however, most families supporting a child or family member with celiac disease find it to be safer, more beneficial and supportive when the entire family understands and puts into practice the elimination of gluten cross-contamination throughout the home.

A necessary part of treatment for celiac disease is meeting with our registered dietitians who have extensive expertise with the disease and understand the special nutritional needs that accompany a gluten-free diet.

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

• 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 patients diagnosed with celiac disease respond well to a gluten-free diet. In some cases however, the perceived lack of response is due to an inadvertent consumption of gluten on the part of the patient, most likely due to cross-contamination. Gluten can be found in many non-food products, as well. In the case of treating refractory celiac disease patients, their diets should be carefully reexamined due to the likelihood of gluten contamination or exposure 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.