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)

Article Date: 5/3/2009

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Article Comments

Comment from: Anita McCrohan | 3/5/2009 12:45:49 PM
Everyone who is diagosed with Coeliac Disease, join the Coeliac Society in your home state. They have a wealth of knowledge to help with the first step to a healthy lifestyle, it's not so bewildering then.

Comment from: Julie Kievel | 3/5/2009 1:05:18 PM
My brother had coeliac disease from when my mum stopped breast feeding. He is nearly 49 now. He could only keep down baked beans and plain mashed potato. That kept him going.

Comment from: daniel | 3/5/2009 6:09:50 PM
yeah i have coeliac it sucks big time but some of the foods are actually better for you than nomrals you dont eat as much junk food as someone that isnt effected by this disease but im 17 ive ahd it since i was in grade for i live with it on the odd occasion i stray from my diet but i try not 2 other than that its not 2 hard 2 live with... =)

Comment from: Mandy | 3/5/2009 9:53:54 PM
I suffered all of my life but was all ways told it was in my head. Then after my first born when I was 20 the symptoms was realy bad with bloating, gut cramps, migrains, what I called a fogy fealing and gaining lots of weight with no reason and many more symptoms. I was still told that there was nothing wrong with me. I had a iradolagest(spelling)put me on a gluten free diet, my symptoms went away and life became bearable till I eat anything with gluten in it I know about it with in 15-30 min. Then when my second child came along we had a lot of problems with her very misable not growing well and eczema that was taking over her body again we were told time and time again there is nothing wrong she will grow out of it. That is where out of desperation we put her on gluten free diet and she got better, her eczema went away. We know when she has had anything with gluten in it as she starts to get eczema again with gut pains.

Comment from: Cheryl Walker | 3/13/2009 12:42:05 AM
Some times people can have coeliac for years and not be diagnosed . My mum was in her late 50's early 60's before she was diagnosed yet from my understanding it is a disease you have for life from birth ????

Comment from: Teresa | 3/13/2009 1:13:35 PM
Our 16 yr old daughter was diagnosed with fibromyalgia and nothing could help alleviate her extreme pain. In talking with a gp who had an interest in naturopathy and had just diagnosed an elderly patient with coeliac, he suggested we try gluten free. WHAT A CHANGE!!! Her symptoms ceased after a month or so. Now when she has eaten something glutenised she knows about it. Her pain levels rise sharply and feels generally unwell with gut ache and the rest that goes with that. Her bloods before she went gluten free had indicated she was slightly anaemic - nothing else to indicate coeliac.

Comment from: prathap kumar | 3/13/2009 1:24:36 PM
good

Comment from: Jenn | 12/29/2009 4:28:47 PM
I had itchy blistering rashes on the bottom of only my left foot for more than 20 years. All sort of diagnosis' which were unrealistic, from soap to heat rash.(affecting only one foot? don't think so). i was reading an article on Coeliac disease in 'body and soul' in the Herald Sun when the light went on!" That's what i have!". I haven't looked back. I feel better, am happier, less depression, reduced seizures from Epilepsy, AND look younger! But it does get depressing when one opens the cupboard and there isn't anything in it to eat. Literally . Roll on immunisation! :)