Are you 1 in 100? Coeliac Awareness Week 13-20 March

Around 1% of the Australian population has coeliac disease. Currently fewer than one in five has been diagnosed. Up to 200,000 Australians have coeliac disease and don’t know it.

Coeliac disease is the result of an autoimmune response which means that the body produces antibodies that attack its own tissues. This autoimmune response is triggered by eating gluten: a protein found in wheat, rye, barley and oats.

In undiagnosed coeliac disease you may see:

•  Unexplained anaemia
•  Nutritional deficiencies such as iron, folate or B12
•  Fatigue
•  Gastrointestinal disturbance such as flatulence, abdominal distention, diarrhoea and/or constipation
•  Nausea and vomiting
•  Unintentional weight loss
•  Delayed growth or delayed general development in children
•  Headaches
•  Liver problems
•  Multiple unexplained fractures
•  Irritability or failure to concentrate
•  Education outcomes that are not as good as they might be

You have a higher risk of having coeliac disease if you have:

•  A family history of coeliac disease
•  Type 1 diabetes
•  Unexplained osteoporosis
•  Infertility or multiple miscarriages

The starting point is getting diagnosed

Coeliac blood screening tests can be ordered by your GP. To correctly diagnose or exclude the possibility of coeliac disease a small bowel biopsy is essential. This procedure is normally done by a gastroenterologist. It is important that a gluten free diet is NOT started prior to diagnostic testing as investigations whilst on a gluten free diet can result in false negative results and may delay the diagnosis of another condition with similar symptoms.

The good news is that coeliac disease can be treated

After the removal of gluten from the diet, the damage that has occurred to the small intestinal lining steadily repairs.

Success stories

The Coeliac Society represents individuals with coeliac disease in Australia and has been successful in:

•  Lobbying, which has resulted in one of the world’s best food labelling standards
•  The provision of excellent resources and support for those diagnosed
•  Prompt dissemination of new research findings

Challenges:

•  To improve the diagnostic rate
•  To fund support for coeliac patients as well as research
•  To educate the medical and catering industry

Australia has world leaders in coeliac research

Exciting research is taking place in Melbourne, led by Dr Robert Anderson PhD FRACP, which is focused on the development of a coeliac vaccine that would target the disease-causing T cells that are reacting to the toxic fragments of gluten to make them gluten ‘tolerant’.

What a difference a diagnosis makes

Charlotte became ill in July 2006. At first it seemed that she was suffering from a bad gastro bug and was hospitalised for dehydration. Whereas most kids bounce back quickly from these bouts of illness, Charlotte remained sick for months with vomiting and diarrhoea most days. She would not sleep longer than a couple of hours at night, either waking up screaming and unable to be settled, or else she would start to gag in her sleep followed by projectile vomit.

The paediatrician diagnosed Charlotte’s illness as behavioural and prescribed ‘behaviour modification therapy’. Being labelled a behavioural case made it harder to get a correct diagnosis.

Charlotte’s mum came in contact with a wonderful paediatric nurse, who agreed with her that Charlotte’s symptoms were not behavioural and encouraged her to follow her instincts until an answer is found. Eventually they got to see a paediatric gastroenterologist at the Children’s Hospital who immediately suspected coeliac disease. After a blood test, endoscopy and biopsy they had the diagnosis within a week.

Unfortunately by this time Charlotte was malnourished and had stopped walking, crawling, and had become socially withdrawn. Her little body was so wasted except for her huge distended tummy. It was heartbreaking to think she had suffered over such a common disease. The relief of finally being listened to, taken seriously, and getting a diagnosis that is so manageable was overwhelming. Charlotte is now doing amazingly well, catching up on her walking, talking and busily exploring her world.

(Source: The Coeliac Society of Australia: March 2009)