Information for parents
Coeliac Disease in Children
Coeliac disease is an immune condition in which eating gluten — a protein found in wheat, barley, rye and oats — damages the lining of the small bowel. It is common, affecting around 1 in 70 Australians, although many people are undiagnosed.
Children can have a wide range of symptoms, and some have very few. Once diagnosed, coeliac disease is treated with a strict, lifelong gluten-free diet.
If your child is being investigated for coeliac disease, do not start a gluten-free diet before the diagnosis has been confirmed, unless your treating doctor has advised you to do so.
Removing gluten can allow the blood tests and the small bowel lining to return towards normal, which makes both the blood tests and intestinal biopsies difficult to interpret and can delay a clear diagnosis.
What is coeliac disease?
In coeliac disease, gluten triggers the immune system to attack the lining of the small bowel. This flattens the tiny finger-like projections (villi) that absorb nutrients. It runs in families and is more common in children with type 1 diabetes, thyroid disease, Down syndrome and some other conditions.
Symptoms in children
- Abdominal pain
- Diarrhoea or constipation
- Bloating and wind
- Poor growth or weight loss, or delayed puberty
- Iron deficiency that does not respond as expected
- Tiredness, irritability or low mood
- Nausea or reduced appetite
- Sometimes very few gastrointestinal symptoms — diagnosis may follow screening because of family history or another condition
How is coeliac disease tested?
Testing begins with a blood test (coeliac serology) while your child is still eating gluten regularly. The main test measures tissue transglutaminase antibodies (tTG-IgA), which the immune system makes in coeliac disease.
A total IgA level is usually checked at the same time. A small number of children naturally have low IgA, which can make the main test falsely normal; if so, different antibody tests are used.
A positive blood test raises the likelihood of coeliac disease but does not automatically confirm it. Levels can be mildly raised for other reasons, and the diagnosis has lifelong implications, so results are best interpreted by a specialist.
Does my child need a gastroscopy?
A gastroscopy with small bowel biopsies has traditionally been used to confirm coeliac disease. Current European paediatric guidelines (ESPGHAN) allow some children with very high antibody levels, confirmed on a second blood sample, to be diagnosed without biopsy. Others will still need a gastroscopy.
The decision depends on your child’s results, symptoms and circumstances, and should be made by a paediatric gastroenterologist.
What about HLA DQ2/DQ8 genetic testing?
Almost everyone with coeliac disease carries the HLA-DQ2 or HLA-DQ8 genes. However, these genes are also carried by a large proportion of the general population who will never develop coeliac disease.
So a positive gene test does not diagnose coeliac disease. The test is mainly useful for exclusion: if a child does not carry these genes, coeliac disease is very unlikely. It can help in selected situations, such as when a child is already gluten-free or when deciding whether ongoing screening is needed.
Treatment
Once coeliac disease is confirmed, treatment is a strict, lifelong gluten-free diet. Even small amounts of gluten can cause ongoing damage, whether or not symptoms occur. Input from a paediatric dietitian is important to learn about hidden gluten, food labelling and cross-contamination, and to keep the diet balanced.
Follow-up includes checking growth, nutritional status (such as iron and vitamin levels) and antibody levels, which usually fall over months on a gluten-free diet. Coeliac Australia is a helpful source of practical support for families.
When should I be concerned?
Talk to your GP about coeliac testing, or ask about specialist review, if your child has:
- Poor growth, weight loss or delayed puberty
- Persistent diarrhoea, constipation, bloating or abdominal pain
- Iron deficiency without a clear cause
- A close family member with coeliac disease
- Type 1 diabetes, autoimmune thyroid disease or Down syndrome
- A positive coeliac blood test
When should my child see a paediatric gastroenterologist?
When a gastroscopy is needed to confirm the diagnosis, you can read what to expect in our guide to paediatric endoscopy.
Children with a positive coeliac blood test should be reviewed by a paediatric gastroenterologist before starting a gluten-free diet, to confirm the diagnosis and decide whether a gastroscopy is needed. Coeliac disease is one of Dr Malik’s areas of clinical and research interest.
Straight answers
Questions parents often ask
Should I stop gluten after a positive blood test?
No — please keep your child on their normal gluten-containing diet until a paediatric gastroenterologist has reviewed them and the diagnosis is confirmed, unless your treating doctor advises otherwise.
Does my child definitely need an endoscopy?
Not always. Some children with very high antibody levels can be diagnosed without biopsy under specialist guidelines. Others need a gastroscopy. A paediatric gastroenterologist will advise.
Can constipation be a symptom of coeliac disease?
Yes. Although diarrhoea is more classic, some children with coeliac disease have constipation.
Can a child have coeliac disease without diarrhoea?
Yes. Many children have other symptoms, such as tiredness, poor growth or iron deficiency, or very few symptoms at all.
Is coeliac disease an allergy?
No. It is an autoimmune condition, where the immune system damages the bowel lining in response to gluten. It is different from wheat allergy.
Should siblings be tested?
Coeliac disease runs in families, so testing of first-degree relatives such as siblings and parents is generally recommended. Talk to your GP.
Will my child’s intestine heal?
Yes. On a strict gluten-free diet, the lining of the small bowel usually heals, often within months to a couple of years.
Can my child occasionally eat gluten?
No. Even small or occasional amounts can cause ongoing damage, even without obvious symptoms. A strict gluten-free diet is recommended for life.
Related children’s gut-health resources
Gastroscopy and Colonoscopy in Children
What to expect before, during and after your child’s procedure.
Abdominal Pain in Children
Common causes of recurring tummy pain and the signs that deserve a closer look.
Constipation in Children
Withholding, painful poos, soiling and why treatment often takes months rather than days.
If your child has persistent gastrointestinal symptoms or your GP has recommended specialist assessment, you can find information about appointments with Dr Rohan Malik here.