Frequently Asked Questions

What is celiac disease?

Also known as gluten intolerance, celiac disease is a digestive disorder that affects one in 133 Americans. Those affected suffer damage to their intestinal lining when they eat specific food-grain antigens, called glutens, that are found in wheat, rye and barley. 

How do you get celiac disease?

Children at higher risk for celiac disease are those who have Type 1 diabetes, autoimmune thyroid disease, dermatitis herpetiformis, Down syndrome, Turner syndrome and Williams syndrome, or have a relative with celiac disease. A person can still have celiac disease, even when not part of a group at higher risk.

Celiac disease runs in families. If one person has celiac disease, other family members have a 1 in 10 chance of being affected by it. The disease may appear anytime in a person’s life, and it is possible to have celiac disease without knowing it. There are certain genes present in most patients with celiac disease, but it is not known what triggers the damage to the small intestine.

How do I know if my child has celiac disease?

Symptoms may begin at any age once gluten is introduced into the diet. If your child has a lot of stomach aches, diarrhea or weight loss, or as an older child has inadequate weight and height gain, delayed puberty or anemia, you should consult a physician. It may or may not be celiac disease, but a physician can help make that determination by ordering a celiac screening blood test.

The next step would be to visit a gastroenterologist, a physician who specializes in digestive problems. The physician may find it necessary to perform a biopsy, taking a sample of your child’s small intestine to examine. Children are given medications so they are comfortable during the procedure. 

How would I recognize celiac disease?

Celiac disease can cause different problems depending on the age of your child:

  • An infant with celiac disease may have abdominal pain and diarrhea, and may fail to grow and gain weight. The child may have a large stomach, thin thigh muscles and flat buttocks.
  • A young child may have abdominal pain with nausea and lack of appetite, anemia (not enough iron in the blood), abnormal liver tests, mouth sores, skin rash and poor weight gain.
  • Teenagers may hit puberty late and be short in stature, with or without vomiting and diarrhea. Other symptoms can be blistering, intensely itchy skin frequently found on the elbows, knees and buttocks, as well as dental enamel defects, bone or joint pain, and unexplained anemia.
  • Celiac disease may go undiagnosed for years. Some children may not have any symptoms and still be affected.

What does gluten do to people with celiac disease?

Gluten damages the intestines, which keeps the body from taking in many of the nutrients in the food your child consumes. These include vitamins, calcium, protein, carbohydrates, fats and other important nutrients. Your child’s body can’t work well without these nutrients. 

How is celiac disease treated?

At this time, there is no cure for celiac disease. Treatment consists of a lifelong avoidance of gluten-containing foods, such as bread, cereal, cakes, pizza and other food products or additives containing wheat, rye and barley.

When gluten is removed from the diet, the small intestine will start to heal and overall health improves. Medication is normally not required. A milk-sugar (lactose) intolerance may also be present, requiring the consumption of Lactaid milk and the use of Lactaid enzyme products for several weeks. Because decreased bone density (called osteopenia) can accompany celiac disease, a physician may recommend a bone density screening. Your child’s physician may also suggest nutritional supplements to correct any deficiencies. Follow-up appointments will be scheduled to monitor the child’s response to the gluten-free diet. 

Maintaining a gluten-free diet

Adapting to a gluten-free diet requires significant lifestyle changes. It is essential to read labels, which are often imprecise, and to learn how to identify ingredients that may contain hidden gluten. Be aware that hidden gluten can be found in some unlikely foods, such as cold cuts, soups, hard candies, soy sauce, many low- or non-fat products, and even licorice and jelly beans. Gluten may also be present as a binder in some pharmaceutical products. Request clarification from food and drug manufacturers when necessary. The gluten-free diet should be continued for life.