Follow up of children with coeliac disease

Do children diagnosed with coeliac disease need follow-up?

The European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) recommends that children newly diagnosed with coeliac disease should have follow-up appointments with a physician or dietitian with expertise in managing paediatric coeliac disease.

ESPGHAN also advises against self-care treatment without adequate supervision from a physician or dietitian.

How frequently should children with coeliac disease be followed up in the clinic?

The initial follow-up appointment should be scheduled 3–6 months after the diagnosis of coeliac disease. Subsequent visits should occur every 6 months until transglutaminase antibody (TTG IgA) levels normalize, followed by intervals of every 12–24 months thereafter.

What is involved in a follow-up assessment for children with coeliac disease?

During follow-up sessions, the children will be assessed for the following:

  • Symptoms related to coeliac disease.
  • Measurements of growth parameters.
  • Coeliac serology levels.
  • Assessment of micronutrient status including haemoglobin, iron, vitamin B12, and vitamin D levels.
  • Screening for autoimmune diseases associated with coeliac disease.

Do children with coeliac disease need to be screened for osteoporosis?

Routine bone-density screening is not recommended by ESPGHAN.

Is a lactose-free diet necessary in children newly diagnosed with coeliac disease?

Dr. Lee often recommends a lactose-free/low lactose diet for children newly diagnosed with coeliac disease who have severe small bowel inflammation. Lactose can be gradually reintroduced as tolerated.

Is it necessary to repeat the small bowel biopsy after the diagnosis of coeliac disease?

ESPGHAN does not recommend routinely repeating the small bowel biopsy in a child diagnosed with coeliac disease who adheres to a strict gluten-free diet. A repeat small bowel biopsy may be necessary if there is doubt about the initial diagnosis of coeliac disease or suspicion of other concurrent additional conditions.

This FAQ is adapted from the ESPGHAN position paper on the management and follow-up of children and adolescents with coeliac disease, published in 2022.