Have you noticed that many more people seem to be following a gluten free diet than ever before? Perhaps you are too? However dietitians are concerned at the increasing number of people turning to a gluten free diet without a medical assessment and proper diagnosis. Why? Because you may be unnecessarily restricting your diet or more importantly not be getting the optimal medical management. In coeliac disease (pronounced seel-ee-ak) strict adherence to a diet is crucial to long term health, but there are many so traps and tips to learn…it’s not just as simple as staying away from breads and cereals. Alarmingly, 75% of people with coeliac disease remain undiagnosed and there is a need for early diagnosis in children. That is over 157,000 Australians. To coincide with Coeliac Awareness Week (second week of March), we take a closer look at the steps you should take.
About our expert:
Karen Inge Accredited Practising Dietitian
High-profile Accredited Practising Dietitian Karen Inge is an active and passionate board member of Coeliac Research Fund. Well known as a media commentator and the nutrition writer for the Australian Women’s Weekly, she also presents a regular segment on Melbourne radio station 3AW. You can listen live during the segment at: www.mytalk.com.au/Stations/Talk/3AW Karen’s publications include ‘Let’s Eat Right! For Families’, ‘Food, Fitness and Feeling Good’, ‘Food for Sport’ and contributions to ‘Clinical Sports Nutrition’.
How can I get diagnosed?
The current ‘gold standard’ diagnosis for coeliac disease is through your doctor. It is extremely important that diagnosis is conducted under medical supervision.
Gene Test
Recent medical advances have discovered that there are two genes associated with the development of coeliac disease, HLA DQ8 and HLA DQ2. Inheriting the gene means a person has a 1 in 30 chance (approximately) of having coeliac disease. The Gene Test can assist in confirming whether HLA DQ8 and/or HLA DQ2 are present. Over 99% of coeliac disease is associated with genes for HLA DQ2 or DQ8; two in three Australians do not have these genes and are effectively unable to have or develop coeliac disease. The gene test is not diagnostic but can be used to exclude coeliac disease.
Blood Test
If both or either of the genes are present it is recommended that a GP arranges a blood test if coeliac disease is suspected. It is important to be ‘gluten challenged’ when taking the test, that is, having eaten the equivalent of 4 slices of wheat bread a day for 6 weeks prior (2 slices a day for children). Do not commence a gluten free diet prior to being tested for coeliac disease. If a gluten free diet has been adopted, the tests used to diagnose coeliac disease will be unreliable, and may be falsely negative. If the test comes back positive, your GP will arrange further tests. Coeliac disease should not be diagnosed by blood test alone.
Biopsy
Following a positive blood result, or if a GP still suspects coeliac disease, referral to a gastroenterologist is then arranged so that biopsies of the small intestine can be taken to confirm a diagnosis of coeliac disease and to ascertain the extent of damage present. This is a simple day procedure requiring only a light anesthetic. A diagnosis of coeliac disease can only be made by small bowel biopsy.
Where to get help?
The Coeliac Society of Australia offers support and advice to those who have been clinically diagnosed with coeliac disease and you are encouraged to become a Member to receive the most up to date info.
Your gastroenterologist will refer you to a Registered or Accredited Practising Dietitian. In Australia, dietitian Sue Shepherd has pioneered many fabulous resources including cookbooks and gluten free expos. You can sign up for the Shepherd Works Irresistibles e-newsletter that also includes info on fructose intolerance and irritable bowel syndrome.
Coeliac Awareness Week
The 2010 campaign targets child diagnosis – the earlier a child is diagnosed the better.
In children, undiagnosed coeliac disease can cause lack of proper development, short stature and behavioral problems. Sometimes, children with coeliac disease don’t have any of these symptoms and just seem ‘out of sorts’. Fortunately, timely diagnosis of coeliac disease and treatment with a gluten free diet can prevent or reverse many of these problems.
In Australia ring the Coeliac Awareness Hotline on 1300 273 272 or visit www.coeliacresearchfund.org/kids to obtain a free brochure on child diagnosis today.
Editor’s note:
Thanks Karen. It’s so valuable to hear about the current diagnostic steps and the important work you are doing with the Coeliac Research Fund. We hope you can share more updates with us soon.
So over to you, we’d love to hear your comments. Any other tips, hints or experiences with the process of diagnosis? Any RD’s or colleagues with insights on diagnosis in your part of the world? Any gluten free recipes or tips?
