What is coeliac disease?
Coeliac disease is an autoimmune condition in which the body's immune system reacts abnormally to gluten, causing damage to the lining of the small intestine. Gluten is a protein found in wheat, rye and barley. Some people with coeliac disease may also need to avoid oats due to the risk of contamination or sensitivity.
The condition causes the villi (small finger-like projections) on the bowel walls to become inflamed and flattened. This damage is called villous atrophy and makes it difficult for the bowel to absorb nutrients.
If untreated, the disease can cause osteoporosis, fertility problems, liver disease, cancer and other auto-immune diseases.
Signs and symptoms
Symptoms of coeliac disease can range from non-existent through to mild or severe, and may include:
- gastrointestinal problems such as diarrhoea, constipation, bloating, flatulence, abdominal pain and nausea
- chronic anaemia (iron deficiency)
- fatigue
- unexplained weight loss or weight gain
- poor growth or short stature
- behavioural changes or irritability
- delayed puberty
- mouth sores
- skin rashes
- joint and bone pain.
How is it diagnosed?
If coeliac disease is suspected, your child will need tests to confirm the diagnosis. It is important that your child continues to eat gluten-containing foods until all testing is complete, as avoiding gluten before testing can affect the accuracy of the results.
Blood tests
The first step is usually a blood test to measure antibodies associated with coeliac disease. Higher than normal antibody levels may indicate that your child has coeliac disease.
Diagnosis without a biopsy
Some children can be diagnosed with coeliac disease without needing a gastroscopy and biopsy. This is known as the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) no-biopsy pathway.
A paediatric gastroenterologist may be able to confirm the diagnosis if your child meets specific criteria, including very high coeliac antibody levels on blood testing and confirmatory results from a second blood sample in a select cohort of children.
Gastroscopy and biopsy pathway
If your child's blood test results do not meet the criteria for the ESPGHAN no-biopsy pathway, a gastroscopy with small bowel biopsies may be recommended. During this procedure, a specialist uses a small camera to examine the upper digestive tract and takes small tissue samples from the lining of the small intestine. The procedure is performed under anaesthetic.
The biopsy samples are examined under a microscope to look for changes caused by coeliac disease, including damage to the intestinal villi (small finger-like projections that help absorb nutrients).
What is the treatment?
It’s important to remove all gluten from your child’s diet once they have been diagnosed with coeliac disease. This may involve a significant lifestyle change for your child.
Please do not remove gluten before you have had the diagnosis confirmed by a Paediatric Gastroenterologist or a Paediatrician in consultation with a paediatric Gastroenterologist.
Gluten is a commonly found in many products and you will need to pay careful attention to the ingredients lists on all packaged goods. Purchasing foods that are labelled gluten-free or are naturally gluten free (e.g. fresh fruit and vegetables, unprocessed meats) will also be good options for your child. A dietitian can help your family learn how to follow a healthy gluten-free diet, identify hidden sources of gluten and ensure your child continues to receive adequate nutrition.
Care at home
Children with coeliac disease should follow a strict gluten-free diet to help the small bowel heal, prevent symptoms and reduce the risk of long-term complications.
Parents and carers can help by:
- reading food labels carefully
- choosing foods labelled gluten-free
- preventing cross-contamination during food preparation
- informing schools, childcare providers and other carers about their child's dietary requirements
- attending recommended follow-up appointments with their healthcare team.
- screen all first-degree relatives.
When to follow-up
Children with coeliac disease should have regular follow-up with their healthcare team to monitor growth, symptoms, blood test results looking for complications and nutritional status. A dietitian and psychologist are important members of the care team.
When to seek medical advice
Contact your child's general practitioner (GP) or healthcare team if:
- symptoms continue despite following a gluten-free diet
- your child has ongoing growth or weight gain concerns
- you are worried about your child's nutritional intake
- you have difficulty managing a gluten-free diet.
Support and resources
We recommend seeing your GP for a chronic health plan for local psychology and dietetics support.
Coeliac Australia provides reliable information and practical support for people living with coeliac disease and their families. Resources include information about gluten-free foods, label reading, eating out and managing coeliac disease at school and social events.
Developed by Gastroenterology, Queensland Children’s Hospital. We acknowledge the input of consumers and carers.
Resource ID: FS155. Reviewed: November 2016.
Disclaimer: This information has been produced by healthcare professionals as a guideline only and is intended to support, not replace, discussion with your child’s doctor or healthcare professionals. Information is updated regularly, so please check you are referring to the most recent version. Seek medical advice, as appropriate, for concerns regarding your child’s health.