By: Anthony Porto, MD, MPH, FAAP
People are thinking about celiac disease and the possibility of a gluten intolerance more often now than they have in the past. About 30% of people living in the United States are following some form of a gluten-free diet—either by choice or due to a medical condition.
In this article, the American Academy of Pediatrics (AAP) answers common questions about celiac disease, gluten-related disorders, and following how children can follow a gluten-free diet.
What is celiac disease?
Celiac disease is a life-long condition affecting the small intestine. When a person with celiac disease eats, or is exposed to gluten (a protein found in food that contains rye, barley and wheat), his or her body destroys the intestinal villi—small, finger-like projections in the small intestine that absorb nutrients from food. Damage to the villi means that nutrients from food cannot be properly absorbed by the body and can lead to gastrointestinal symptoms, poor absorption of nutrients, and potentially to poor weight gain. No matter how much a person eats, he or she remains malnourished. When this happen to children, it can affect their growth and development. Once a child stops eating gluten, the villi heal and can absorb nutrients normally.
Who is at risk for celiac disease?
Approximately 35-40% of people carry one or both celiac genes—called HLA-DQ2 and DQ8. Those who carry one or both genes are considered to be "at risk" of developing celiac disease, although only a small percentage will actually develop the condition. In addition, children with certain conditions and/or syndromes may be more at risk for celiac disease.
Children with one or more of the following are at an increased risk of developing celiac disease and should be considered for testing:
What are the symptoms of celiac disease?
The symptoms of celiac disease vary widely and are influenced by age.
Very young children may have poor growth, which begins at the time that they start eating any gluten-containing solid foods—about 6 months of age. Other classic symptoms in children this age are diarrhea and gas.
Older children and teens may have other symptoms such as abdominal pain, vomiting, and constipation. Non-gastrointestinal symptoms include delayed growth during puberty (short stature), skin rashes, iron deficiency anemia that does not respond to iron supplementation, elevated liver function tests, and bone problems (osteoporosis).
Note that some children, particularly those in high-risk groups, will not show any symptoms and are typically found to have celiac disease through a blood test.
What is the difference between celiac disease and gluten sensitivity?
In addition to celiac disease, there are two other classes of gluten-related disorders: wheat allergy and non-celiac gluten sensitivity.
Wheat allergy is an immediate, allergic response to wheat protein (IgE-mediated). It can lead to gastrointestinal symptoms and other symptoms seen with celiac disease.
Non-celiac gluten sensitivity is not well defined, and some doctors believe it may only be caused by an intolerance to wheat and not to all gluten-containing grains. The type of intolerance seen in non-celiac gluten sensitivity does not lead to intestinal inflammation, as is seen in celiac disease.
How do I know if my child has celiac disease or another gluten-related disorder?
For celiac disease: Several tests are done to officially diagnose celiac disease. The first step is a blood test to look for certain antibodies—including tissue transglutaminase IgA. The level of these antibodies is usually high in people with celiac disease, but it is almost never increased in people without it. If the test is positive, a biopsy of the small intestine is recommended to confirm the diagnosis of celiac disease. The biopsy is usually collected during a test called an upper endoscopy—where a tube with a small camera on the tip is passed into the mouth and down the gastrointestinal tract and removes small pieces of the surface of the small intestine. The biopsy is not painful and is performed by a pediatric gastroenterologist while a child is sedated.
Other testing may include additional blood work for other antibodies such as deamidated gliadin IgG and endomysial IgA. Genetic testing may also be performed by taking a swab of the cheek; this is done in certain circumstances if the diagnosis of celiac disease is not certain.
For a wheat allergy: Blood tests or skin- prick tests can be done to see if there is an elevated wheat IgE blood level or a skin reaction to the presence of wheat antigen on the skin.
For non-celiac gluten sensitivity: There are no accurate tests available for evaluating.
A child should continue to eat foods containing gluten until all testing is complete. Starting a gluten-free diet or avoiding gluten before testing may make it difficult to confirm the diagnosis.
What is the treatment for celiac disease?
The only available treatment for celiac disease is a strict life-long, gluten-free diet. It is important to limit cross-contamination—even crumbs containing gluten can lead to symptoms and intestinal inflammation. Additionally, gluten may be found in certain medications and in some non-food items such as shampoo and make-up—but these are not harmful unless they are eaten. Talking to a knowledgeable dietitian can help parents and children make the needed adjustments to a gluten-free lifestyle. Without treatment, children with celiac disease can go on to develop anemia, osteoporosis, and other complications.
Is the gluten-free diet healthy?
Just because a food is labeled "gluten-free" does not mean it is better for you. Therefore, reading labels may not always be the most efficient way to remain healthy and symptom-free. See Gluten-Free Food Labeling.
Processed gluten-free foods are not vitamin fortified. For example, they may lack B vitamins and iron and be high in fat and sugar and low in protein.
Eat naturally gluten-free and healthy foods. These include fruits, vegetables, meats and fish, as well as a variety of grains including amaranth, millet and quinoa.
Some children with celiac disease may also need a daily multivitamin.
What accommodations can be made for a child with celiac disease?
Parents of children who are newly diagnosed with celiac disease will need to speak to their child's teacher or child care provider about the condition, what foods are safe, and what to do in case of inadvertent exposure to gluten.
School lunches: Schools are required by law to provide substitutions to the school meals for children with celiac disease—if their needs are supported by a statement signed by a licensed doctor. The doctor's order may require certain products to be purchased for the child. Schools may not charge children with certified special dietary needs more than they charge other children for program meals or snacks. In other words, children who receive free lunches cannot incur any charges for their meals and children who pay full-price cannot be charged extra for the special foods the school must purchase.
Classroom management: Children with a 504 plan or those who can document their condition are entitled not only to lunch, but to a plan for classroom management of their celiac disease. That might mean young children with celiac will not have access to glue or other gluten-containing art class items they might taste or put in their mouths. It might mean older children will not have field trips where they might encounter gluten, such as a tour of a bread factory.
Additional Information & Resources:
About Dr. Porto:
Anthony Porto, MD, MPH, FAAP is a board-certified pediatrician and board-certified pediatric gastroenterologist. He is an Associate Professor of Pediatrics and Associate Clinical Chief of Pediatric Gastroenterology at Yale University and Director, Pediatric Gastroenterology at Greenwich Hospital in Greenwich, CT. He is also the medical director of the Yale Pediatric Celiac Program. Within the American Academy of Pediatrics, Dr. Porto sits on the PREP Gastroenterology Advisory Board and is a member of the Section on Gastroenterology, Hepatology and Nutrition. He is also a member of the North American Society of Pediatric Gastroenterology, Hepatology and Nutrition's Public Education Committee, a pediatric expert on nutrition for The Bump's Real Answers, and is the co-author of The Pediatrician's Guide to Feeding Babies and Toddlers. Follow him on Instagram @Pediatriciansguide.