What is Coeliac Disease?
Coeliac Disease is a condition where the lining of the small bowel is damaged due to a protein in food called Gluten. Gluten is found in wheat, barley, triticale, rye and oats. When gluten is included as part of the diet, this can lead to damage of the finger-like projections (called 'villi') in the small bowel that are responsible for absorbing food. The inflammation caused by gluten makes the villi flat, which can lead to poor absorption of the nutrients found in food.
How common is it?
There is now more awareness about coeliac disease in the community, but the incidence of coeliac disease is also increasing. It is estimated that coeliac disease affects around 1 in every 100 people. It is more common in people of European descent, but can affect anybody. It rarely occurs before 12 months of age because of the late introduction (>6 months of age) of solids and thus gluten. It can affect children and adults at any age thereafter.
The development of coeliac disease is related to both genetic and environmental factors. Close relatives of sufferers should be screened as up to 10% may be affected. Coeliac disease can also develop in association with other immunological conditions such as type 1 diabetes, and thyroid disease. It is also more common in people with Down syndrome.
What are the symptoms?
Coeliac disease can lead to a number of symptoms, however many children have few symptoms or even no symptoms at all. The symptoms usually relate to the changes in the surface of the gut and the poor absorption of calories, vitamins and minerals. Symptoms can include:
- Abdominal pain.
- Poor weight gain or even weight loss and slow growth can occur because fewer calories are absorbed from food.
- Deficiencies of vitamins and minerals can lead to anaemia (looking pale and feeling tired).
- osteoporosis (brittle bones from low calcium and vitamin D).
Cancer of the intestinal lymph system (lymphoma) is an uncommon complication of coeliac disease. Avoiding gluten can usually prevent this complication.
How is it diagnosed?
Screening for coeliac disease is initially done with blood tests, but confirmation of the diagnosis requires a biopsy from the surface of the small bowel. As coeliac disease is a life-long condition, it is absolutely essential that the diagnosis is confirmed with the biopsy as blood tests alone can be misleading.
The blood tests include looking for increased levels of antibodies (such as antigliadin, anti-endomysial and tissue transglutaminase) When these are raised, the diagnosis of coeliac disease becomes more likely and a referral to a paediatric gastroenterologist is required for further assessment and a biopsy. This may take time but it is essential for your child to remain on their regular diet until the biopsy is done.
The biopsy is done under general anaesthetic and 3-4 biopsies (superficial pieces of the gut lining) are taken using an endoscope (a flexible tube with a camera attached to its end) that is passed down your child's throat.
What is the treatment?
Once coeliac disease is confirmed, it is essential to fully exclude gluten from your child's diet for life (gluten-free diet (GFD)). The GFD needs to exclude all sources of gluten, as eating small amounts of gluten can cause further damage to the gut and affect growth even though it may not lead to symptoms. It is important to talk to a dietitian about the GFD to ensure that you are given appropriate advice about your child's diet.
Many common foods need to be replaced with gluten-free alternatives. These include:
Also you will need to learn to identify hidden sources of gluten, particularly in commercially packaged food.
Once your child is on a GFD, the inflammation in their small bowel settles without any other medications and their gut will heal. As there may be low levels of some vitamins and minerals, sometimes your doctor may suggest that your child has extra supplements initially. Your doctor may also suggest that your child has a low lactose diet (See separate fact sheet on Low Lactose Diet) for a short period. This is because the changes of Coeliac disease can lead to a lack of sugar-splitting enzymes, which are located on the villi. These enzymes return to normal levels once your child's bowel recovers with start of GFD.
It is important for your child to have follow-up with their dietitian and their doctor to ensure your child recovers as expected and stays well with normal growth.
The Coeliac Society offers support to people affected by coeliac disease and their families. It is strongly recommended that you join the Coeliac Society (website details below).
Currently researchers are working to develop genetically modified grains that will be safe for people with Coeliac disease. Other research is focusing on whether some oats can safely be included in a gluten free diet. In Australia at the moment, it is recommended to exclude oats from the diet. You should discuss these issues further with your doctor.
For more information
Coeliac Society of Australia on www.coeliac.org.au
- Coeliac disease has many symptoms ranging from none to severe
- Make sure your child stays on a normal diet until the diagnosis is confirmed with a biopsy
- A life-long gluten-free diet is the treatment for coeliac disease
- A dietitian is essential in the care of your child, to ensure that your child's diet is adequate