Coeliac disease: a hidden issue in New Zealand


Above: Auckland Kids’ Club members enjoy a great day making gluten free pasta, pizza and muffins.

Tens of thousands of Kiwis are suffering from coeliac disease unknowingly. A recent Australian population study has revealed that coeliac disease is 40 percent more prevalent in women and 25 percent more prevalent in men than previously thought.

Dr Bob Anderson, a New Zealand gastroenterologist involved in the research, said that if a similar study was conducted in New Zealand it would likely identify 65,000 Kiwis have the disease, yet 75 percent have no idea about it.

What is coeliac disease?
Coeliac disease is a permanent, autoimmune disorder caused by an intolerance to gluten which is found in wheat, barley, oats and rye.

This intolerance to gluten causes the body to produce antibodies which damage the lining of the small bowel and make it impossible for the body to absorb vitamins, minerals and other nutrients from food. Both genetic and environmental factors play important roles in coeliac disease and coeliac disease is hereditary.

Each year thousands of new cases of coeliac disease go unnoticed because the symptoms and diagnosis of the disease are not clear cut. Symptoms can occur in all groups and may include diarrhoea, fatigue, weakness, bloating, nausea, flatulence, weight loss or constipation. All of which are common symptoms of a wide range of conditions.

‘Thousands of people go to their GP each year because they feel sick and tired,” says Coeliac New Zealand president Terry Hoskins.
“Being sick and tired are symptoms of so many conditions as well as our ever-increasing busy lifestyles. However, if someone has been this way for a long time they should ask their GP for further investigations to be done,” he said.

Early diagnosis is essential
As coeliac disease prevents the absorption of essential nutrients, long-term risks from undiagnosed or untreated coeliac disease may include chronic poor health, osteoporosis, infertility, depression, dental problems and may increase the risk of gastrointestinal and oesophageal cancer.
In children long-term risks include a lack of proper development, short stature and behavioural problems.

It is important that if you think you have coeliac disease to first talk to your doctor. You should mention if a relative has coeliac disease and/or dermatitis herpetiformis (an associated condition) or if you or a family member has been treated for anaemia. There are number of ways that you can test for coeliac disease:

  • Blood tests
  • Biopsy/endoscopy
  • Gene testing
  • Treatment

After a confirmed diagnosis, coeliac disease is treated by a lifelong gluten free diet. By specifically removing the cause of the disease, this treatment allows all abnormalities, including the lining of the small bowel to recover completely.

As long as the diet is adhered to strictly, no problems should occur.  An initial few weeks on a gluten-free diet which also has a low cow’s milk content (to lower the lactose sugar intake) may be warranted as this will allow the bowel lining to recover and replace its normal quantity of the enzyme lactase, which splits or digests lactose sugar before absorption.

In a small number of coeliacs the enzyme lactase may slowly recover and the need for low or no cow’s milk content in the diet may persist for some time.

Diagnosis of Coeliac Disease

If you suspect you have coeliac disease, it is important that you should stay on a normal gluten-containing diet.

A gluten free diet should not be started as it will interfere with establishing the correct diagnosis. A diagnosis cannot be made simply by you trialling a gluten free diet and feeling better/symptom free. If a gluten free diet has already been adopted, the tests used to diagnose coeliac disease are unreliable, and can be falsely negative.

If gluten has been removed from the diet, a normal diet must be resumed for at least six weeks before testing. During this ‘gluten challenge’, a minimum of four slices of wheat based bread (or equivalent) should be consumed each day (for adults) (two slices of wheat based bread each day for children).

It is important the gluten challenge is carried out properly to ensure reliable testing results.

Auckland Kids’ Club enjoy a family day of fun and gluten free food in the park.

Auckland Kids’ Club enjoy a family day of fun
and gluten free food in the park.

Coeliac Disease myth busters

There is a lot of conflicting and outdated information about coeliac disease. Here are some common misconceptions.

‘Coeliac disease is rare’…MYTH
Research shows that in fact coeliac disease affects 1 in 100 people in NZ, making it much more common than previously thought. Under-diagnosis is a significant problem, with only 1 in 8 people being diagnosed.

‘Coeliac disease is a simple food intolerance’…MYTH
Coeliac disease is not a food intolerance or a food allergy. It’s an autoimmune disease which means the body’s immune system reacts to gluten by attacking its own tissues. In coeliac disease, eating gluten causes the lining of the gut (small bowel) to become damaged and may affect other parts of the body.

‘Only children get coeliac disease’…MYTH
Coeliac disease can develop and be diagnosed at any age. It may develop after weaning onto gluten containing cereals, in old age or any time in between. Coeliac disease is most frequently diagnosed in those aged 40-60 years old. Diagnosis is often delayed; Coeliac research shows the average time is takes for people to get diagnosed is 13 years.

‘You have to have gut symptoms such as diarrhoea to have coeliac disease’…MYTH
Coeliac disease is known as a ‘multi-system’ disorder, which means that symptoms can affect any area of the body. Symptoms differ between individuals in terms of type and severity, and not all symptoms of coeliac disease are gut related. Click here to see a list of the symptoms of coeliac disease.

‘You have to be underweight to have undiagnosed coeliac disease’…MYTH
Recent work has shown that most people with coeliac disease are of normal weight or overweight at diagnosis. Body weight alone should not be used to decide whether or not you should be tested for coeliac disease.

‘You can ‘grow out’ of having coeliac disease’…MYTH
Coeliac disease is a life-long condition. The gluten-free diet is the complete treatment for coeliac disease. If gluten is introduced back into the diet at a later date, the immune system will react and the gut lining will become damaged again. If someone following a gluten-free diet is re-tested for coeliac disease (antibody blood test, gut biopsy) the tests would be expected to be negative. This does not mean they no longer have coeliac disease, it simply means they are sticking to the gluten-free diet. This is because there is no gluten for the immune system to react against, and hence no coeliac antibodies in the blood. Taking gluten out of the diet allows the damage to the gut lining, detected by the gut biopsy, to heal.

‘A breadcrumb won’t hurt someone with coeliac disease’…MYTH
Even very small amounts of gluten can be toxic to people with coeliac disease. Taking sensible steps to avoid cross contamination with gluten is therefore important.

Top tips include:
• Keep cooking utensils separate during food preparation and cooking
• Avoid frying food in the same oil that has previously been used to cook gluten containing foods
use a clean grill, separate toaster or toaster bags to make gluten-free toast
• Use separate breadboards and wash surfaces thoroughly

‘Coeliac disease only affects people of European origin’…MYTH
Coeliac disease affects all ethnic groups, and is common not just in Europe and North America, but also in countries of southern Asia, the Middle East, North Africa and South America.

Coeliac New Zealand (CNZ)

CNZ is a not-for-profit organisation formed in 1973 to promote the welfare of children and adults who have been medically diagnosed with coeliac diease, dermatitis herpetiformis and persons who on medical advice are required to follow a gluten free diet.

CNZ works closely with a huge variety of stakeholders including members, health professionals, educators, government and gluten-free manufacturers.

CNZ have 42 support groups nationwide with more than 3000 members.

Coeliac New Zealand will  be at the Gluten Free Food & Allergy Show in Hamilton on March 21 and 22.



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