What to know about kids and coeliac disease

Having a child diagnosed with coeliac disease can be a daunting prospect. Here’s how to navigate a gluten-free life for kids.

For some people, going gluten-free is more a choice then a necessity, with purported benefits ranging from weight loss to boosting energy.

For others, ditching gluten can ease symptoms of non-coeliac gluten intolerance that tend to make life a little unpleasant, like bloating, abdominal pain and diarrhoea.

But for those with coeliac disease, there is no choice but to adhere to a strict gluten-free diet – for life.

And if you have a child diagnosed with coeliac disease, it can feel like a minefield. What does it mean? What can they eat? How do you deal with kids’ parties and sleepovers?

We ask the experts for their top tips for parents dealing with a gluten-free diet:

What is coeliac disease?

Coeliac disease is an immune-mediated condition where the surface of the small bowel is damaged and doesn’t function normally.

Gluten, a protein found wheat, barley and rye, can trigger the start of this process in someone who has at-risk genes, and children are not immune.

From onset, coeliac disease is incurable.

More than 355,000 Australians have coeliac disease, though a whopping 80 per cent don’t know they have it.

Pediatric gastroenterologist Professor Andrew Day says coeliac disease can present in children at any age after they have started cereals in their diet.

What are the symptoms of coeliac disease?

Symptoms may include:

  • Weight loss
  • Abdominal pain
  • Abdominal distension
  • Diarrhoea
  • Pallor
  • Lethargy

Prof Day says older children can have less pronounced symptoms that might include abdominal pain, constipation, diarrhoea or iron deficiency.

Dietitian Penny Dellsperger says failure to thrive, prolonged fatigue, nutrient deficiency (especially iron, B12 or folate) are other symptoms. But sometimes, there are no signs.

Who is most at risk of coeliac disease?

Children with type 1 diabetes, Down syndrome, or Turner’s syndrome and those with a close family member with coeliac disease are at greater risk, Professor Day says.

Research shows there is an increasing prevalence of type 1 diabetes and coeliac disease coexisting.

How coeliac disease is diagnosed in children

If a child has symptoms, a blood test will be taken to check antibodies.

If the antibodies for coeliac disease are high, an endoscopy of the small bowel will be taken for biopsies.

With a diagnosis, a child would be referred to a dietitian and start a gluten-free diet. Parents and siblings should be tested at the same time, Prof Day says.

Kids and living with coeliac disease

The only way to manage coeliac disease is a strict gluten-free diet.

“It’s vital to be strict and rigorous. Getting the right advice, information and resources is really important. Generally, most children with a strict gluten-free diet will have recovery of their small bowel after 12 months,” Prof Day says.

Prof Day says managing coeliac disease for children can be difficult.

“Children must avoid any exposure or contamination from gluten. Going out, school lunches, birthday parties and other social events can pose problems,” he says.

He says linking with other families or Coeliac Australia can be helpful.

Prof Day says there’s potentially hope for those with coeliac disease.

“There are many people working on ways to manage coeliac disease, but none are currently available. However, it is very likely that one or more of these will become available in the future,” he says.

“A vaccination was promising initially but is now on hold due to less-encouraging results.”

Top tips from a parent of a coeliac child

Sydney mum Pip Bucknell, whose seven-year-old daughter, Lucy, was diagnosed with coeliac disease at age three, makes a point to keep teachers and other parents informed about the condition.

“I write to her teachers explaining she has coeliac disease, and while it can be managed through diet, there are other things they need to be aware of such as gluten in glue, paint, playdoh, straw and dried pasta,” she says.

“While most schools are strict about not sharing food, I still ask the teacher to keep an eye on my daughter and not to give her any treats until I’ve checked labels/ingredients.”

Pip says it is essential a child with coeliac disease always has “safe” food with them to eat.

“At playdates and parties, mention your child is coeliac and can only eat gluten-free foods,” she says.

“Offer to send along some gluten-free food. Remind others cooking to use new packets of ingredients, like butter, to avoid errant toast crumbs, and ensure surfaces/utensils are clean.

“Ultimately you are responsible for your child’s health. If you feel uncomfortable about leaving your child in someone’s care, suggest you stay while the kids play, or help out at a party to keep an eye on things.”

March 13-20 is Coeliac Awareness Week.

Kid-friendly gluten-free sweet treats to try:

Written by Sally Heppleston.