Celiac disease affects 1 in 100 people worldwide. It is a hereditary disease, meaning that it runs in families. People who have a first-degree relative (parent, sibling or child) with celiac disease have a 1-in-10 risk of developing it.
What is celiac disease? It is an autoimmune disease in which gluten (a protein found in wheat, barley and rye) triggers a person’s immune system to attack his or her own small intestine. The small intestine is the place where we absorb fats, proteins and sugars. The damage done by the immune system in celiac causes the long, fingerlike parts of the small intestine, called villi, to become much shorter. When the villi are short, the small intestine is not able to absorb enough nutrients from food.
Celiac disease affects people differently. Symptoms vary, but in children we usually see abdominal pain and poor weight gain. We can also see bloating, constipation, vomiting, diarrhea, weight loss, fatigue, irritability, delayed puberty, anemia and joint pain. If your child has these symptoms, it is helpful to discuss them with your pediatrician so that some screening blood tests can be done to help find the cause.
If the screening tests are positive for celiac, or even if they are negative but celiac disease is still likely, your child will be referred to a pediatric gastroenterologist to check further for celiac disease. The best way to diagnose it is an upper endoscopy. This is an outpatient procedure in which a biopsy of the small intestine is analyzed to see if there is damage because of celiac disease.
While a patient is being evaluated for celiac disease, it is important to stay on a regular diet. Being on a gluten-free diet can change the results of the testing and interfere with getting a diagnosis. We recommend that parents and children come to us with their questions and bloodwork results so that we can decide together how to proceed. It is necessary to know if you have celiac since it is a lifelong disease and can lead to other serious illnesses. Determining the risk of these illnesses relies on having a correct diagnosis.
If celiac has been confirmed with testing, the treatment is to be on a lifelong, strict gluten-free diet. This means that wheat, barley and rye must be avoided. Wheat is found in bread, baked goods, soups, pasta, cereals and sauces. Barley is found in soups, food coloring and malt. Rye is usually in pumpernickel and cereal. Gluten can also be found in medications, vitamins, supplements and Play-Doh. Even small amounts of gluten, such as bread crumbs in a toaster, can trigger an immune response. Parents and children should be careful when eating at restaurants and buying groceries. It is helpful to meet with a dietician along with your pediatric gastroenterologist for guidance.
Some people have a non-celiac gluten sensitivity (NCGS) or a non-celiac wheat sensitivity (NCWS). They have symptoms like celiac disease but tests are not positive for celiac. Removing gluten from their diet helps their symptoms. However, people who have NCGS or NCWS are not at risk for other autoimmune diseases or for illnesses related to celiac disease.
To make an appointment with a specialist at the University of Miami Health System who treats patients with celiac disease, please call 305-243-3166.
Amber H. Langshaw, M.D., is assistant professor of clinical pediatrics at the University of Miami Health System. She sees patients with celiac disease, inflammatory bowel disease and other gastrointestinal disorders.