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Research
Coeliac disease has been
recognised as an under researched and greatly underdiagnosed disease.
The Coeliac Society is keen to
encourage research regarding coeliac disease, dermatitis herpetiformis, the
gluten free diet and any associated conditions. We actively support and have
representation on the Australian and New Zealand Coeliac Research Fund (ANZCRF)
which has been formed to work towards a cure and other ethical forms of
treatment of coeliac disease.
The research fund has included
education about coeliac disease within the medical profession as one of its
major activities.
Peter Gibson, Chair of ANZCR
wrote the following article for the March 2007 edition of The Australian
Coeliac magazine –
What it Means to be at the
Cutting Edge
It is likely there is a commonly
held misbelief that "We know all that we need to know about coeliac
disease - we know its cause (gluten) and we know its treatment (gluten free
diet)? What else can we possibly gain from further research"?
The effects of this way of
thinking are complacency and lack of progress. These lead to laziness and
boredom in health professionals, sufferers may just unquestioningly accept
'their lot', and it may foster lack of interest from politicians and the food
industry and, most importantly, contribute to continuing unresolved issues for
those intimately associated with coeliac disease. If research was not
occurring, we would still think that coeliac disease was rare, the range of
gluten free foods would be like it was 20 years ago, and many sufferers would
still be treated for their irritable bowel or chronic fatigue syndrome with
poor outcomes.
What would it mean to people if
Australia was leading the world in research into coeliac disease? First,
coeliac disease would create interest and excitement, and this in turn would
mean that health professionals would be better informed, would more rapidly
reach the diagnosis and would have a greater chance of being right up-to-date
with developments and improvements in practice. Secondly, it would mean that
sufferers may not accept being 'just alright' but would expect excellence in
health and want the latest in medical, dietary and other management. Thirdly,
governments would be interested in what sufferers and their families thought of
them and the food industry would see opportunities for expanding markets and
products. Finally, hope and optimism would replace frustration and irritation
amongst those where ongoing issues cannot be currently resolved.
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Enter the ANZCRF
The Australian and New Zealand
Coeliac Research Fund (ANZCRF) was set up a few years ago to move Australian
doctors and researchers from stagnation to the cutting edge of coeliac disease.
In its short life, it has been successful in stimulating interest and research
into coeliac disease in two important ways:
1. It has provided much needed
funds for specific research projects. For example:
Work from dietitian Sue Shepherd has
studied for the first time the details of what untreated/undiagnosed coeliac
disease does to the composition and physiology of the body, and how a gluten
free diet influences changes seen. This work has, amongst other things,
enhanced our understanding of what damage is or is not done, and how it repairs
or otherwise over one year of the gluten free diet. Analysis of this detailed
study is still in progress. Results will be reported in a later edition of The
Australian Coeliac.
Dr Jason Tye-Din, Consultant Gastroenterologist and Dr Bob Anderson, Consultant Gastroenterologist and Immunologist have been fine mapping the details of how gluten stimulates the immune system
to cause damage to the bowel. This work is pivotal to the development of
coeliac vaccines, the ultimate prize.
Greg Tanner from the CSIRO is
examining how to produce non-toxic cereals that behave like gluten-containing
cereals and produce the bread slice that can, in the words of Sue Shepherd,
'wrap around a sausage'.
2. It has worked to enhance
professional education about the disease.
This has been achieved by direct
educational events where members of the Fund have lectured Gastroenterologists,
Physicians, General Practitioners and Dietitians. More recently, an educational
CD-ROM, providing the latest information in assessing and diagnosing coeliac
disease, has been produced. This will provide an important educational source
particularly for Primary Care Doctors (GPs).
Such exciting work has been
possible largely because of the generosity of members of The Coeliac Society
and the food industry. Many thanks to all those who have supported the Fund.
The quest continues and we hope your donations will be an annual event.
Peter Gibson
Chair / ANZCRF
Vist the ANZCRF website.
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