It is estimated that as many as 250,000 Australians are suffering from Coeliac Disease, according to the Daily Telegraph March 12, 2007. They state that at 1 in 100 people are estimated to have the disease but only 1 in 5 are actually diagnosed. This is largely due to lack of awareness of the condition and symptoms being confused with other conditions such as irritable bowel syndrome (IBS), stress and aging.The symptoms for Coeliac Disease can include diarrhea, fatigue, constipation, weight loss, mouth ulcers, headaches and severe stomach cramps. Delayed diagnosis and long term exposure to gluten has also lead the disease to be linked to osteoporosis, infertility and multiple miscarriages and cancer. Due to the variety of non-specific symptoms it can be difficult for your GP to spot the signs for Coeliac Disease. This is why Graham Price of the Australian Coeliac Society recommends that you mention the potential of Coeliac to your GP. Although the awareness for Coeliac disease amongst GP’s has increased in recent years, there are still many people going undiagnosed as there are so many other conditions GP’s have to consider. In order to diagnose Coeliac, a blood test is taken followed by a biopsy. It is believed that while people are born with a predisposition to the disease, only 1 in 30 will develop Coeliac Disease. Environmental factors have been attributed to triggering the condition and recent research suggests delaying the introduction of Gluten products until after a baby is four months old can assist with preventing the condition.

Currently there is no cure for Coeliac Disease, but it can be managed by following a strict Gluten Free diet.

According to the Daily Telegraph “Doctor’s at the Royal Adelaide Hospital announced last year they had developed a miniature laser telescope that can provide virtual biopsies of the small bowel to give more accurate diagnosis.” And the “Royal Melbourne hospital is also involved in trials of a vaccine”

Campaigners are using Coeliac awareness week to highlight the symptoms of the condition and to try to get more “silent sufferers to receive potentially life saving diagnosis”.

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My two cents… I am continually impressed by the research, development and campaigning for Coeliac Disease. When I was diagnosed many years ago, most people had never even heard of Coeliac let alone Gluten. Now it seams a day doesn’t go by that I don’t meet another Coeliac or someone who has a friend or family member with the condition.

I recently had two Australian friends come and visit me in Canada. Before they arrived they had never heard of Coeliac, but through the course of their stay, they learnt about my condition and how to cater for a gluten free diet. When I told them this week that 1 in 100 Australian’s actually suffered from the disease, they were shocked. As avid myspace addicts they replied that it meant they must know at least 2 or 3 other people with the condition as they have almost 300 friends linked to their myspace. So we set the challenge and sure enough the next day, they found more of their friends that had or knew someone with Coeliac!

I was intrigued by our experiment and so would like to set the challenge to all my other friends; do you know someone (other than me) with Coeliac?

Only yesterday, when I was updating my blog, another friend of a friend mentioned that his girlfriend’s Dad has just been diagnosed at 60!

So talk to your families and friends and see if you can find someone else who has Coeliac, you may just be surprised by the results!

The 12th International Celiac Symposium was held in New York in Nov. 2006, organised by an Australian, Dr. Peter Green who is Director of Celiac Disease Centre at Columbia University in New York City. The high but undetected rate of celiac disease in many communities and patient groups was the topic of many of the presentations. In Hungary, community nurses used finger prick tests for celiac disease that can be read in 5 minutes to find affected children before they start school. Amongst the 2676 children tested, 1 in 73 were found to have Celiac disease. In Finland, it was reported that the prevalence of celiac disease has doubled in the last 20 years. In Sweden suffered from an epidemic of celiac disease among children born in 1993, but only half as many children born with the disease in 1999. Sweden is now recommending not to introduce Gluten into a baby’s diet until 6 months and to breast feed until at least 9 months as studies have shown that environment plays a critical role in determining whether Coeliac disease does develop.

The most interesting session was regarding initial clinic trials of a drug designed to reduce intestinal leakiness. The drug was safe and showed promising activity to reduce the damage caused by moderate amounts of gluten.

Australia is doing research work leading to the design of a Coeliac vaccine. Australia has a large footprint on the Coeliac world map. Our food labeling laws are the most advanced in the world, and our research is highly regarded.

Here are just a few of the activities on for Australian Coeliac Awareness Week: Queensland * Delectable gluten free morning tea – bring a friend! Monday When: 10.00 am, Monday 19th March, 2007 Where: Grand Ballroom, Stamford Plaza Hotel, Cnr Edward & Margaret Streets, Brisbane * Chinese Gluten Free Dinner At Lido’s When: Friday, 16th March Where: Lido’s Chinese restaurant Moores St, Acacia Ridge Cost: $29.00 * An Information Morning For Members Only It is a great opportunity to ask some questions about gluten free food and labeling. Bring along your ingredient list. There will be light refreshments. When: Saturday, 17TH March, 2007 Where: Ground Floor 25 Evelyn St, Newstead For more information contact the Queensland Coeliac Society

New South Wales & Australian Capital Territory
* Canberra Support Group had a Gluten Free Food Fair over the weekend.
* Dubbo group have a information table at Dubbo Centro on Wednesday 14
* The Hills District have a stand at Stockland Mall from 17-20 March.
* All week the Health Food Store in the Port Pacific in Port Macquarie will be taking free blood tests to help with diagnosis of Coeliac Disease and will also have Naturopaths on hand to answer questions.

South Australia
* All day seminar (6 professional speakers) March 15, at St Xavier’s Church Hall Cnr Wakefield St & King William St, Adelaide

Victoria

* 13/3/07 Gluten Free Diet the Healthy Way discussion with Dietitian Melanie Nichols
* 14/3/07 Multi Purpose Bread Mix & more demonstration by Well and Good
* 15/3/07 Free fun cafe style sampling of new Freedom Foods range
* 17/3/07 Gluten Free Bus Shopping Tour Download flyer
* 19/3/07 Discussion and Demonstration Children Treats

The Gluten Free Bus Tour
Saturday March 17, 2007
Departing 10am Caulfield Railway Station
Returning approximately 4pm
Cost $60 per person including lunch
To book contact the Victoria Coeliac Society

“Come join us for a gluten free shopping tour and stock up. Departing from Caulfield Railway Station at 10.00am. Travelling to Gluten Free foods in Mornington. Followed by a two course lunch at The Grand Hotel in Mornington, then onto a Gluten Free Cash and Carry (Orgran) and finishing up at Sunnybrook.”

Each state society holds events through local support groups targeting doctors, restaurants, food retailers, manufactures and the general public. Their objective is simple – spread the word about Coeliac disease and the requirements of a gluten free diet.

Although I am in Canada and cannot be part of all the festivities back home I thought I would spend this week reporting on the various events and activities and do my little bit to help increase the awareness of Coeliac disease.

Below is an interesting article from the Australian Coeliac Society, which talks about the prevalence of Coeliac disease in Australia and the effects it has on our society.

The gluten free diet is not a fad diet for over 250,000 Australians!

Coeliac Awareness Week
13 – 20 March

Medical practitioners and the food and catering industry need to be aware that for many Australians the gluten in wheat, rye, barley and oats is not food, but poison.

Coeliac Disease is now recognised as an underdiagnosed life long disease affecting over 250,000 Australians (prevalence 1:70-250 caucasians and west Asians) with a range of presentations.

How much of a burden to society is untreated coeliac disease?

We do not have the answer yet but we can say that we are working towards it and other important economic questions needed to be answered about coeliac disease. The Australian New Zealand Coeliac Research Fund has recently commissioned the School of Population Health, University of Melbourne to undertake an important project. Over the next twelve months, they will quantify, in health and economic terms, the full impact of coeliac disease, in Australia and New Zealand and identify useful priority areas for future research.

Some of the clinical features that prompt screening for coeliac disease are family history of coeliac disease, unexplained anaemia, fatigue, nutrient deficiency, diarrhoea, constipation, irritable bowel type symptoms (although gastrointestinal symptoms may not be present), osteoporosis, growth and developmental delay in children, recurrent mouth ulcers, unexplained neurological complaints, infertility and recurrent miscarriage, skin rash – typically itchy and blistering. Coeliac disease is associated with a range of conditions which include type 1 diabetes, thyroid disease, liver enzyme disturbance, colitis and other autoimmune diseases.

Don’t trial a gluten free diet

A gluten free diet should never be started before an endoscopy and blood tests, as it will interfere with establishing the correct diagnosis or may delay the diagnosis of another condition with similar symptoms.

If you would like further information you can contact –
The Australian Coeliac Society on +61 2 9411 4100 or info@coeliac.org.au