Coeliac disease (pronounced seel-ee-ak) is an immune disease caused by gluten, a protein in wheat, rye, barley and oats. When people with coeliac disease eat gluten, an inappropriate immune reaction causes inflammation and damage to the small bowel (intestine). Untreated, coeliac disease can cause a range of symptoms and health problems. Treatment involves lifelong and strict avoidance of gluten in the diet and leads to healing of the bowel and better health.
Who gets coeliac disease?
Coeliac disease affects people of all ages, both male and female. You must be born with the genetic predisposition to develop coeliac disease. If someone in your immediate family (parent, sibling, child) has coeliac disease, you have about a 10% chance of also having the disease. Other factors such as environment can trigger coeliac disease in infancy, childhood or later in life.
How common is the condition?
Coeliac disease affects approximately 1 in 70 Australians. However, around 80% of remain undiagnosed, meaning you may have coeliac disease and don’t yet know it.
Can coeliac disease be cured?
People with coeliac disease remain sensitive to gluten throughout their life, so in this sense they are never cured. However, a strict gluten free diet does allow the condition to be managed effectively. A strict, lifelong gluten free diet is currently the only recognised medical treatment for coeliac disease.
Symptoms of coeliac disease
The symptoms of coeliac disease vary considerably and can include one or more of the following:
- gastrointestinal symptoms e.g. diarrhoea, constipation, nausea, vomiting, flatulence, cramping, bloating, abdominal pain, steatorrhea
- fatigue, weakness and lethargy
- iron deficiency anaemia and/or other vitamin and mineral deficiencies
- failure to thrive or delayed puberty in children
- weight loss (although some people may gain weight)
- bone and joint pains
- recurrent mouth ulcers and/or swelling of mouth or tongue
- altered mental alertness and irritability
- skin rashes such as dermatitis herpetiformis
- easy bruising of the skin
- unexplained infertility
How do I get diagnosed?
- Keep eating gluten
Do not commence a gluten free diet prior to being tested for coeliac disease. If a gluten free diet has already been adopted, the tests used to diagnose coeliac disease are unreliable, and can be falsely negative.
- Blood tests are used for screening
Blood tests (coeliac serology) are used to screen for coeliac disease. Coeliac serology measures antibody levels in the blood which are typically elevated in people with untreated coeliac disease, due to the body’s reaction to gluten.
Importantly, a diagnosis of coeliac disease SHOULD NOT be made on the basis of a blood test alone. A positive blood test always needs to be followed by a small bowel biopsy to confirm the diagnosis.
- A small bowel biopsy is essential to confirm diagnosis
A diagnosis of coeliac disease can only be made by demonstrating the typical small bowel changes of coeliac disease (villous atrophy). This involves a gastroscopy procedure in which several tiny samples (biopsies) of the small bowel are taken, which are then examined under a microscope to confirm the presence of villous atrophy
Why a medical diagnosis is important?
As coeliac disease is a serious medical condition with lifelong implications, a definitive diagnosis is essential. The gluten free diet is not a trivial undertaking and involves lifestyle changes and learning new skills such as reading and interpreting food labels. It should only be undertaken after the diagnosis of coeliac disease has been properly medically established.
If a gluten free diet has already been adopted prior to diagnosis, the tests used to diagnose coeliac disease are unreliable, and can be falsely negative.
By obtaining a proper diagnosis, you can be assured that your symptoms are caused by coeliac disease (and should therefore improve once the gluten free diet is established) and not by another more sinister condition.
Coeliac Queensland is a not-for-profit membership organisation committed to providing support, information and understanding to people diagnosed with coeliac disease or medically requiring a gluten free diet. For further information https://www.coeliac.org.au/s/
This article was published in Issue 15 of our print magazine, April/May 2016.