It’s amazing how the popularity and availability of gluten free foods has increased over recent years…no longer do you have to hunt for a gluten free bread mix in an obscure health food shop…these days most bakeries will provide gluten free bakery items, most cafes will do the same, the supermarkets stock an array of gluten free products and dining out has become much easier with many restaurants providing gluten free offerings.

Many more people seem to be following a gluten free diet than ever before. Those with coeliac disease must follow a strict gluten free diet to avoid causing harm to their body, but there are others who simply avoid gluten because they have bowel discomfort or simply feel better eliminating gluten from their diet. Of concern is that an increasing number of people are turning to a gluten free diet without a medical assessment and proper diagnosis. These people may either be unnecessarily restricting their diet or not be getting the appropriate medical management of their condition.

What is coeliac disease?

Coeliac disease (pronounced seel-ee-ak) is an auto immune disorder which affects 1 in 100 people, in Australia.

It is nearly twice as common as Type 1 diabetes and on a par with stroke rates.

Alarmingly, 75% of those with the condition remain undiagnosed. That is over 157,000 Australians don’t know they have it and simply either put up with feeling ‘out of sorts’ or have no symptoms at all and are walking time bombs with regards to their longer term health.

Auto-immunity occurs when the body mistakenly produces antibodies that damage its own tissues. In the case of coeliac disease, it is a chronic inflammatory disease of the small intestine (bowel) where the body mistakenly produces an immune reaction to dietary gluten, the protein fraction of the grains wheat, barley, rye and oats. This reaction damages the intestinal lining, compromising nutrient absorption, growth and development. Gluten is effectively a poison to someone with coeliac disease.

What happens?

In a healthy person tiny, finger-like projections known as villi line the small intestine (bowel). The function of the cells on villi is to break down and absorb nutrients in food. Through a microscope, the lining of the small intestine normally looks rather like shag-pile carpet, the villi making up the “pile”. The entire surface area of a healthy small intestine with normal villi is comparable in size to that of a tennis court.

In those with untreated coeliac disease, the auto immune response to gluten results in the villi becoming inflamed and the intestine has a characteristic flat appearance (like a threadbare carpet). This flattening of the villi reduces the surface area of the intestine available for nutrient absorption (to the size of a tablet or less) which causes malabsorption and leads to nutrient deficiencies and other symptoms.

Coeliac disease is a family affair

Recent medical advances have discovered that there are two genes associated with the development of this disease, HLA DQ8 and HLA DQ2. Inheriting the gene means a person has a 1 in 30 chance (approximately) of having coeliac disease. Even though the average age of diagnosis in Australia is around 40, coeliac disease typically starts in childhood between the ages of four and seven, although symptoms can present at any age.

Environmental triggers are also involved in the development of the disease. While this process is not fully understood, some environmental triggers may include

• When gluten is introduced to diet
• After a bout of gastroenteritis that doesn’t go away
• After an infection
• After taking immune stimulating drugs

What are the symptoms?

Coeliac disease may cause a number of symptoms that can be confused with other conditions like gastroenteritis, chronic fatigue and irritable bowel syndrome.

Common symptoms or outcomes include:

• Iron, folate, Vitamin B12 or D deficiency
• Anaemia
• Gastrointestinal symptoms such as excessive flatulence, abdominal pain, nausea, diarrhoea, constipation, bloating or pain
• Skin rash (dermatitis herpetiformis)
• Tooth enamel problems
• Fatigue, sleepiness
• Lack of concentration
• Depression
• Osteoporosis
• Other auto-immune disease such as type 1 diabetes
• Weight loss
• Infertility (especially in men)
• Associated cancers

Sometimes, children with coeliac disease don’t have any of these symptoms and just seem ‘out of sorts’.

How to get diagnosed

The current ‘gold standard’ diagnosis is through your doctor. It is extremely important that diagnosis is conducted under medical supervision.

Gene test

The Gene Test can assist in confirming whether HLA DQ8 and/or HLA DQ2 are present. Following release of new research findings and its launch in 2003, HLA DQ gene testing was launched in Victoria and has gradually been incorporated in coeliac disease testing. 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 (only 1 in 30 people who carry a coeliac gene will develop 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). 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.

Although coeliac disease affects men, women and children equally it appears that females between the ages of 15 and 74 account for the vast majority of individuals lodging Medicare claims for coeliac disease blood and gene tests. It would appear that children and males are tested for coeliac disease substantially less than would be expected.

How can I manage coeliac disease?

As gluten is effectively poisonous to the system of someone with coeliac disease, the only management and treatment at this time is a strict gluten free diet.

People with coeliac disease remain sensitive to gluten throughout their life, so in this sense, they are never cured. There is no correlation between symptoms and bowel damage: despite the absence of symptoms, damage to the small intestine (bowel) can still occur if gluten is ingested. A crumb of bread the size of a baby’s fingernail can damage the lining of the small bowel. The small bowel lining steadily repairs and the absorption of nutrients from food returns to normal once gluten is removed from the diet. People with coeliac disease should remain otherwise healthy as long as they adhere to a gluten free diet, however, relapse occurs if gluten is reintroduced.

The Coeliac Society of Australia offers support and advice to those who have been clinically diagnosed with coeliac disease and can be contacted via www.coeliacsociety.com.au

What about the long term?

The long term consequences of coeliac disease are related to poor nutrition and malabsorption of nutrients. Untreated coeliac disease can lead to chronic poor health, osteoporosis, infertility, miscarriage, depression and tooth enamel defects. There is also a small, but real, increased risk of certain forms of cancer such as lymphoma of the small bowel. In children, undiagnosed coeliac disease can cause lack of proper development, short stature and behavioral problems. Fortunately, timely diagnosis of coeliac disease and treatment with a gluten free diet can prevent or reverse many of these problems.

Will there ever be a cure?

Some amazing research is being conducted throughout Australia to better understand coeliac disease and discover a cure. The establishment of the Coeliac Research Fund (CRF) in 2008 was a major stepping stone in raising awareness, diagnosis rates and supporting vital research. By collaboratively working with The Coeliac Society, health care professionals and those with an interest in the management of coeliac disease, the CRF is committed to effecting change. Funding is required if the CRF are to continue to make a difference and information on how to support and find a cure can be found on the CRF website www.coeliacresearchfund.org

Coeliac awareness campaign

Coeliac Awareness Week is in the second week of March. The 2010 campaign targeted child diagnosis – the earlier a child is diagnosed the better. Coeliac disease affects one in 100 Australians, but 75% of them are not diagnosed. It is one of the most under diagnosed conditions of our time.

Ring the Coeliac Awareness Hotline on 1300 273 272 or www.coeliacresearchfund.org/kids to obtain a free brochure on child diagnosis today.

Gluten free diet

A gluten free diet is essential for everyone who has coeliac disease. Following a strict gluten free diet can be challenging particularly in social settings and there is no advantage in avoiding gluten unless you have been medically diagnosed with Coeliac disease or a related medical condition.

A gluten free diet involves choosing foods that do not contain gluten.

Gluten-containing grains include:

• Wheat (all varieties, including spelt, durum, kumut and dinkel)
• Barley
• Rye
• Oats
• Triticale, and
• Derivatives of these products, eg. Malt derived from barley.

Food products that are sources of gluten:

• Breads and cereals made from these grains
• Most breakfast cereals
• Wheat flour (including wheaten cornflour, dinkle, kumut, spelt)
• Wheat pasta, noodles
• Semolina, couscous, burghul, stuffing
• Wheat biscuits, cakes, pastry, scones, communion hostsWheat crumbed and battered foods
• Wheat pastry foods e.g. pies, pizza

Fortunately there are a great range of alternative gluten free products now available. This will enable you to make the transition from a wheat-based diet to gluten free easily without sacrificing good nutrition or enjoyment of food. Specialty gluten free products include gluten free pasta, breakfast cereals, breads, crispbreads, sweet biscuits and many others. The health food section of the supermarket, health food stores and other specialty outlets will stock a variable range of gluten free foods.

Gluten-free grains and starches:

• Rice (all forms, even glutinous)
• Corn/maize
• Potato
• Soy
• Tapioca/cassava
• Arrowroot
• Buckwheat
• Sago
• Lentil/pea (besan, urid, gram flour)
• Amaranth
• Lupin
• Sorghum
• Quinoa
• Millet

A gluten free diet involves a lot more than just avoiding regular bread and wheat based pasta. It is very involved. Despite this, there are plenty of foods you can still enjoy! For example, many food groups are gluten free already. The gluten free diet permits fruits, vegetables, plain meat, fish and chicken, legumes and lentils, most dairy foods, oils and margarines.

Gluten may also be present in other foods such as confectionery, sausages and smallgoods, sauces, dressings and other condiments, canned soups, stock cubes, malted and cereal drinks, yeast extract spreads, soy milk, custard powder, icing sugar mixture, baking powder, beer, medications, etc.

People with coeliac disease can buy three types of gluten free foods:
1) those that are naturally gluten free i.e. fresh fruit & vegetables, unprocessed meats etc.
2) those that are clearly labeled on the packet as being gluten free
3) those that are determined to be gluten free by reading the ingredients of a packaged food, and confirming that each individual ingredient is gluten free, to then know that the whole product is safe.

Identifying “type 3” foods above can be a challenging task! Understanding ingredients is a necessary skill and must be taught properly. To help ensure you are enjoying your diet safely and you are educated about making the correct choices and enjoying a good variety of foods, it is recommended you see a dietitian with experience in coeliac disease.

**Tables above are general in nature. People requiring a gluten free diet should check the ingredients of every food they consume to ensure suitability.

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