How to manage pediatric celiac disease

Managing celiac disease can be challenging for patients of all ages, but particularly for children who not understand what their diet requires.

A new report from a group of researchers headed by John Snyder, MD, Children's National Health Systems, Washington, DC, presents new guidelines, published in Pediatrics, for pediatricians to use in the ongoing management of pediatric celiac patients based on evidence-based best practices.

“Studies demonstrate that children who are seen on a regular basis for their celiac disease and who are taught about how to manage their disease cope better with celiac disease and the gluten-free diet. Parents play a big role in the teaching,” says J Decker Butzner, MD, FRCPC, clinical professor in the department of Pediatrics at Alberta Children’s Hospital in Calgary, Canada, chair of the Canadian Celiac Association, and co-author of the study.

Celiac disease is an autoimmune disorder in which the body reacts poorly to gluten-a protein found in wheat, rye, and barley products. The reaction results in damage to the small intestine leading to nutritional malabsorption. The best management strategy is strict adherence to a gluten-free diet, but this can be a challenge for children, and ongoing evaluation is needed to determine whether children and families have achieved compliance with the diet in order to decrease the risk of complications from the disease.

Related: Is the gluten-free diet healthy for all children?

Multiple evidence-based North American and European guidelines have been created to address diagnoses of celiac disease in children, but relatively little evidence-based information is available to assist clinicians with the ongoing management of these children, Butzner says. For this study, 7 experts in pediatric celiac disease reviewed the existing literature and developed recommendations to improve compliance and outcomes for the management of pediatric celiac disease. They developed a list of best practices that includes the evaluation and follow-up of bone health; hematologic conditions; endocrine associations; liver injury and need for evaluation of hepatitis B vaccination status; and growth and nutrition, according to Butzner.

At the time of diagnosis, all children with celiac disease should have a complete blood count and ferritin test to screen for nutritional anemias-particularly iron, folate, or B12 deficiencies, according to the guidelines. Iron-deficiency anemia or low iron stores are common, and children who present with poor growth or diarrhea, especially with weight loss, should be screened for other nutrient deficiencies. They should also be assessed for elevated liver enzymes and hypothyroidism as these may occur in children with celiac disease. If abnormalities are identified, ongoing evaluation needs to be conducted until they are corrected, Butzner says.

After diagnosis, celiac disease should be managed through adherence to a strict gluten-free diet, and families who are new to the celiac diagnosis are advised to meet with a dietician to offer education on label reading for hidden sources of gluten and safe food preparation.

NEXT: What else should you look for in children with celiac disease?

Children with celiac disease should be managed with multivitamins because of the lack of supplementation and enrichment in gluten-free flours. Families also should be counseled on age-appropriate intake and supplementation of calcium and vitamin D to head off decreased bone density that may be present at the time of diagnosis. Butzner says that children, unlike adults, are able to recover bone density lost as a result of severe malabsorption or metabolic bone disease after 1 year on a gluten-free diet.

A review of the child’s growth and health should occur at 1 year after diagnosis, and then every 1 to 2 years thereafter, preferably by both a physician and a dietician. Review should include growth measurements, interim health history, a complete blood count, and follow-up celiac serology (IgA-tissue transglutaminase) to monitor compliance with the gluten-free diet, Butzner says.

Children that had not received a hepatitis B vaccination at the time they were diagnosed also should have their immunization status reviewed, Butzner advises. “Literature suggests that 30% to 70% of children with untreated celiac disease are nonresponsive to the hepatitis B vaccine,” he says.

Butzner also recommends screening for hypothyroidism, particularly at ages of rapid growth.

Celiac isn’t as rare as was once thought, Butzner says, which is actually a good thing in terms of management. Roughly 1 in 133 North Americans have celiac disease and gluten-free food options are now readily available, making strict adherence to a gluten-free diet more manageable than it once was.

The key for pediatric populations is teaching children to manage their own diets, Butzner says. “They need to be involved in grocery shopping, menu planning, restaurant assessment, food ordering, and trip organization in regard to a gluten-free diet,” he says.

A commentary on the guidelines, also published in Pediatrics, champions the suggestion that pediatric celiac patients be screened for hepatitis B immunity-a lesser-known complication of celiac disease.

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The commentary authors, Tracy R Ediger, MD, PhD, a pediatric gastroenterologist at Nationwide Children’s Hospital in Columbus, Ohio, and Ivor D Hill, MD, MB, ChB, pediatric gastroenterologist and director of the Celiac Disease Center at Nationwide Children’s Hospital, also praise the research team for crafting a set of guidelines that can provide clinicians with clear directions for follow-up care.

“Studies clearly show that those with celiac disease who have regular follow-up are more likely to remain adherent to a gluten-free diet and have a better long-term prognosis,” Ediger and Hill write in the commentary. “This article provides a useful roadmap to healthcare providers for the associated testing at diagnosis and during follow-up visits to monitor for comorbidities associated with the underlying disease, or as a consequence of the dietary restrictions, and to ensure the optimal health and well-being of the patient.”

Although not mentioned in the guidelines, there has been recent research suggesting that all celiac patients benefit from pneumococcal immunization. Only about a quarter of celiac patients in the study had been vaccinated at the time of diagnosis, but the study warns that patients with celiac disease are 28% more likely to contract community-acquired pneumonia as a result of hyposplenism caused by their celiac disease.