Coeliac disease: how to become your own health advocate

It is currently estimated that 60,000 to 70,000 New Zealanders have coeliac disease (CD) – that’s approximately one in every 70 kiwis! However, up to 80 percent of those are unaware they have the condition. People of all ages can have coeliac disease, yet the average age of diagnosis is 40.

If you understand the condition and resulting issues, then you can develop strategies for daily life.

What is coeliac disease?

Coeliac disease (pronounced see-lee-ak) is a permanent intestinal reaction to dietary gluten. With coeliac disease, the cells lining the small bowel (intestine) become damaged and inflamed. This causes flattening of the tiny, finger like projections, called villi, which line the inside of the bowel.

The function of the villi is to breakdown and absorb nutrients in food. When these villi become flat, the surface area of the bowel is greatly decreased, which interferes with the absorption of nutrients from food. This may lead to deficiencies in vitamins (such as folic acid) and minerals (e.g., iron and calcium).

Coeliac disease is hereditary, however both genetic and environmental factors play important roles in coeliac disease. The symptoms of coeliac disease vary considerably and can include fatigue, weakness, and lethargy, diarrhoea, or chronic constipation.

Getting diagnosed

A medical diagnosis of coeliac disease is key to managing and improving your health. If you suspect you have coeliac disease, it is important to first talk to your doctor. It can take some time before symptoms are identified as being caused by coeliac disease as not all people have typical symptoms. The complexity of atypical, no, or minimal symptoms means that up to 80% of people are completely unaware they have the disease.

Treatment

Coeliac disease is treated by a life-long gluten free diet. By specifically removing the cause of the disease, this treatment allows all abnormalities to recover completely. As long as the diet is adhered to strictly, patients can recover.

If you think you may have coeliac disease, a gluten free diet should not be started until you have had a diagnosis.  This is because it will interfere with getting a correct diagnosis, giving unreliable answers that can be a false negative. Simply trialling a gluten free diet and feeling better is not enough for diagnosis either – although this can indicate gluten intolerance, it does not highlight the existence of coeliac disease. A proper diagnosis is vital for ensuring you can correctly manage the disease and get your body healthy again.

The Gluten Free Diet

There are many foods you can still enjoy on a gluten free diet although it may involve more time reading labels and food packaging to make sure it’s coeliac friendly.  

Gluten free food falls into the following categories: 

Naturally Gluten Free Foods
Many foods are naturally gluten free. These include fresh fruit, vegetables, rice, potato, corn, plain meat (not sausages), fish, eggs, cheese, milk, most yoghurts, pulses (peas, beans, and lentils), fats and oils. There are many grains that are naturally gluten free, for a full list please refer to our list of Gluten Free Grains/Flours. 

Products displaying the Crossed Grain logo
These are certified by Coeliac New Zealand, and are independently tested to be safe for people, with coeliac disease and those on a gluten free diet. So, look for products that carry the Crossed Grain Logo when doing your grocery shopping, it provides assurance that a product is safe and will eliminate the need for label reading. 

Products Labelled Gluten Free
Products manufactured in New Zealand and Australia, can only be labelled ‘gluten free’ if they contain ‘no detectable gluten’. However, there are many imported products which are not labelled under the New Zealand food labelling law. 

Products that are Gluten Free by Ingredient
In New Zealand and Australia any ingredient in a product that is derived from wheat, rye, barley, or oats, must be declared on the ingredients panel. Note though that this only applies to products that are manufactured in New Zealand and Australia.

Be your own advocate

While coeliac disease is a lifelong diagnosis, it can be effectively treated with a strict gluten-free diet. Coeliac New Zealand suggests it pays to be your own advocate, even if you’ve got great support networks. Other strategies that can help include:

  • getting a prompt diagnosis
  • getting expert gastroenterologist and dietitian advice
  • exercise and mindfulness
  • self-compassion
  • making peace with the unfairness of dealing with CD
  • understanding your own temperament and how you work through challenges – make decisions about how you respond.

Who is Coeliac New Zealand?

Coeliac New Zealand is a national not-for-profit or “for purpose” organisation with a staff of three and around 40 volunteers who raise awareness, provides support, information, and resources to people with coeliac disease, their whanau, and the wider community. We support research, education, and initiatives for those working in the health sector. Coeliac New Zealand Incorporated’s (CNZ) vision is that people with coeliac disease live healthy lives every day. 

For many people with CD and their whanau, CNZ is one of the only places that understands their condition and helps them to not feel alone in managing this lifelong condition and provides coeliac safe events, social forums, a dedicated Coeliac Link magazine, an Annual Awareness Week each year in June and an informative website with relevant information.

Raising awareness about Coeliac disease is important because all ages are affected and being able to explain coeliac disease to the whole whanau, is important. The resources we provide helps people to do this. By becoming a member of Coeliac New Zealand, you are supporting the work we do in your community.

View a range of videos about coeliac disease on Coeliac New Zealand’s YouTube page.

If you’re interested in a presentation for your group or workplace about developing strategies for a coeliac safe gluten free lifestyle, get in touch with our Health Promotion Manger Lisa Jury.

Visit its website for information and to register for the 2021 Coeliac NZ Conference.

Photo by cottonbro from Pexels

About Coeliac New Zealand

Coeliac New Zealand
Coeliac New Zealand is a national not-for-profit or “for purpose” organisation with a staff of three and around 40 volunteers who raise awareness, provides support, information, and resources to people with coeliac disease, their whanau, and the wider community. We support research, education, and initiatives for those working in the health sector. Coeliac New Zealand Incorporated’s (CNZ) vision is that people with coeliac disease live healthy lives every day.

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