Coeliac disease in children and the impact on families

Coeliac disease is not typically diagnosed in babies before 12 months of age, depending on the symptoms and the severity of symptoms that they present with as well as their genetic risk. Coeliac disease can run in families, and the risk for coeliac disease is higher for children when one or both parents or a sibling has coeliac disease.

A child with symptoms of coeliac disease my show gastrointestinal symptoms such as

  • Reflux
  • Abdominal pain
  • Diarrhoea
  • Bloating/distended tummy
  • Constipation

Or a child may show non-gastrointestinal symptoms (or some children may show both), including  

  • Fatigue
  • Anaemia
  • Decreased appetite/picky eating
  • Delayed puberty
  • Faltering growth
  • Static weight or weight loss or stunting.
  • Itchy skin rash

Some children may have few or no symptoms at all.  When testing for coeliac disease in children if a child is symptom free and growing normally but has other risk factors for coeliac disease (such as genetics) it is currently recommended to wait until 4 years of age (antibody tests are more accurate from the age of 4). If a child is showing symptoms of Coeliac disease (especially those such as persistent anaemia and failure to thrive) antibody tests can be done at any age, although they are not diagnostic on their own and further testing and referral to a gastroenterologist is required.

Introducing solids; what about gluten?

When to introduce gluten into a baby’s diet is a common worry for some parents, especially if the parents are coeliac themselves.

Current evidence suggests that the introduction of gluten does not need to be delayed, and that gluten can be commenced from when a baby is ready to start solids, even if they are at higher risk of coeliac disease;

  • Studies show that gluten can be introduced into a baby’s diet between the ages of 4 and 12 completed months (bearing in mind that the current recommendation for starting solids in Australia is at around 6 months of age when your baby is developmentally ready and not before 4 months of age) and that the age of gluten introduction in infants between 4 -12 months does not appear to influence the absolute risk of developing Coeliac Disease Antibodies or Coeliac Disease during childhood (ESPAGHN 2016)
  • There is also insufficient evidence at this stage to show an optimal amount of gluten to be introduced when starting solids on the risk of developing Coeliac Disease or Coeliac disease antibodies (ESPAGHN 2016). The current recommendation is to introduce gluten containing foods as you would any other food.

Coeliac Disease Management in Children and Family life:

Coeliac disease is a permanent life-long condition and management of coeliac disease involves following a strict gluten free diet. Even trace amounts of gluten can damage a child’s small intestine, without always showing symptoms. This can present many challenges for families of babies, young children and even teenagers with coeliac disease.

Having a child diagnosed with coeliac disease can impact a family in many ways;

Keeping gluten-free food separate at home
Families need to keep gluten-free foods separate from gluten-containing foods, so that the child with coeliac disease doesn’t accidentally eat gluten.

  • All gluten-free foods are usually stored away from foods with gluten e.g., on a separate shelf in the pantry
  • Use of separate chopping boards, utensils and even spreads such as butter/jam are required to prevent crumb contamination
  • Cleaning utensils and appliances that might have gluten-containing foods, even crumbs, on them, and use of a separate toaster for gluten-free breads.

Reading labels on all foods
The supermarket shop can suddenly take a lot longer and may also be more expensive, as label reading is a must on all foods to determine if there is any gluten present, and most gluten free products are more expensive.

Taking care when eating out

  • Families may need to call ahead to ensure there is a gluten free option for a child, especially at birthday parties for items such as birthday cake, party foods and lolly bags.
  • It can also mean checking the ingredients at a restaurant or takeaway shop and also confirming if they have a separate area for preparing gluten free options.

Recipes and Meal planning

  • Changing or modifying recipes so they are gluten free may involve the whole family sometimes changing the way that they eat. Ensuring children are still included in family meals is important.

An Accredited Practicing Dietitian is the most qualified person to support a family and child with coeliac disease and provide specific advice and education on how to manage a gluten-free diet.

Anna Ritan

Anna Ritan APD BND is a Paediatric Dietitian and Nutritionist and creator of Nourish Little Lives.

Anna created Nourish Little Lives to provide parents with evidenced based nutrition information, so parents can make informed decisions about their child’s nutrition. 

Anna has 12 years of experience as a Dietitian, and has specialised in Paediatric and Neonatal Dietetics. Working with thousands of babies, children and families and as a busy mum of 3 young children, her approach to nutrition is individual, practical and realistic. 

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