What is coeliac disease?

Coeliac disease (pronounced SEE-lee-ak) is an autoimmune disease that is triggered by gluten and affects your small bowel (part of your digestive system). If you have coeliac disease and eat foods that contain gluten, your immune system reacts to the gluten and causes damage to your small bowel.

Gluten is a protein found in grains such as:

• wheat (including spelt)
• rye
• barley

Coeliac disease affects people of all ages and genders. It runs in families and can develop at any age.

What causes coeliac disease?

If you have coeliac disease, your immune system's response to gluten causes damage to the small intestine (small bowel). The tiny, finger-like projections lining your bowel are called villi. If you have coeliac disease, the villi become inflamed and flattened (known as villous atrophy). This lowers the amount of nutrients and minerals your bowel can absorb from food.

It's not yet known why people develop coeliac disease, but there are factors that can increase your risk.

Coeliac disease is a genetic condition which means it can be passed down through the family. If you are diagnosed with coeliac disease, you should tell any family members who share your genes (parents and siblings) so they can also be tested. A parent, sibling or child of someone with coeliac disease has a 1 in 10 chance of developing it too.

Having certain genes (HLA-DQ2 and HLA-DQ8) makes it more likely that you will develop coeliac disease. However, most people with one or both genes don't develop coeliac disease. This means that both a person's genes and their environment play a role in triggering coeliac disease.

You're also more likely to get coeliac disease if you have certain health conditions including:

• type 1 diabetes
• ulcerative colitis
• neurological disorders such as epilepsy
• thyroid disease
• Down syndrome

What are the symptoms of coeliac disease?

People with coeliac disease may have severe symptoms, or they may have no symptoms at all.

Common symptoms that affect the gastrointestinal tract (gut) include:

• diarrhoea or constipation
• pale stools with an unpleasant smell that are difficult to flush
• nausea and vomiting
• flatulence (passing wind) and bloating
• abdominal pain or discomfort

Other symptoms and problems can include:

• low weight or slow weight gain in children
• fatigue (feeling tired)
• weight loss
• severe or persistent mouth ulcers
• irritability and depression
• developmental delay or delayed puberty in children
• unexplained iron, vitamin B12 or folate deficiencies

Many of these symptoms may also be caused by other conditions. However, coeliac disease is often not diagnosed, so it should be considered as a possible cause of your symptoms.

Up to half of people with coeliac disease don't have any symptoms, but their bowel may still be damaged by the condition.

Symptoms of coeliac disease can be different in children. Find out more about coeliac disease in children.

When should I see my doctor?

You should see your doctor if you have symptoms of coeliac disease, especially if you have a family history or you have risk factors.

Coeliac disease is a serious medical condition that affects people for their whole life, so it's important to get an accurate diagnosis from your doctor.

If you think you may have coeliac disease, don't stop eating foods containing gluten until you've been officially diagnosed. Stopping gluten can make the tests needed for diagnosis less accurate.

You should also ask your doctor about being tested for coeliac disease if you have:

• early-onset osteoporosis
• unexplained infertility
• liver disease
• Down syndrome or Turner syndrome
• dermatitis herpetiformis (a skin condition linked with coeliac disease)
• autoimmune disease such as type 1 diabetes or thyroid problems
• unexplained neurological (nerve) symptoms

How is coeliac disease diagnosed?

Your doctor will ask about your symptoms and perform a physical examination. If your doctor suspects coeliac disease, they may refer you for tests such as:

• Blood tests — These are used to check for antibodies to gluten in your blood (known as coeliac serology). This is a screening test only. If your blood test is positive, your doctor will confirm the diagnosis with a small bowel biopsy.
• Gastroscopy with small bowel biopsy — This is used to diagnose coeliac disease.
• Genetic tests — If the diagnosis is uncertain, your doctor may refer you for genetic testing. A negative genetic test can be used to rule out coeliac disease but can't confirm a diagnosis.

Beware of alternative diagnostic methods such as:

• hair analysis
• stool-based tests
• iridology
• Vega testing

These tests are unreliable and may delay diagnosis or give you an incorrect diagnosis. Alternative diagnostic methods can cause you to get treatments that you don't need or that don't work.

How is coeliac disease managed?

Coeliac disease can't be cured, but it can be managed with a strict, lifelong gluten-free diet.

Your sensitivity to gluten will never go away. Removing gluten from your diet is the only way your small bowel can heal and stay healthy.

You should follow a gluten-free diet, even if your symptoms are mild. Mild symptoms don't mean you have a mild disease.

You should see your doctor regularly after your diagnosis. Most people with coeliac disease have blood tests at least yearly to monitor their condition. Your doctor may also refer you for another small bowel biopsy 1 to 2 years after diagnosis to make sure that your bowel is healing.

Gluten-free diet

Maintaining a gluten-free diet involves reading and understanding food labels.

Foods can only be labelled gluten-free in Australia if they don't contain any detectable gluten, oats or malted ingredients.

Oats don't have gluten, so many people do not need to avoid them. But oats have a protein called avenin, which some people with coeliac disease might react to. Also, oats can be contaminated with gluten when they are processed. If you have coeliac disease, speak to a dietitian before eating oats.

Most packaged food in Australia must list ingredients from grains that contain gluten on their ingredients list. Alcoholic beverages aren't included in this labelling law. This means you need to learn which drinks are gluten-free. For example, all regular beers contain gluten.

Your state coeliac association or a dietitian can help you learn which foods are gluten-free.

You can also look for the 'crossed grain' logo on packaged foods. This logo means the product has been reviewed and approved by Coeliac Australia and is suitable for a gluten-free diet.

Living with coeliac disease

If you are diagnosed with coeliac disease, it can seem overwhelming at first to start a lifelong gluten-free diet.

Here are some tips for making this change easier:

• Choose foods that are naturally gluten-free like fruits, vegetables and meat.
• Take it one meal at a time and start with simple swaps such as gluten-free bread or pasta.
• Read the ingredients list on packaged food.
• Keep gluten-free snacks handy.
• When you're eating out, ask the staff about the ingredients and how the food is prepared.
• Find a supportive community to connect with others with coeliac disease, such as Coeliac Australia.

What are the complications of coeliac disease?

The changes in the small bowel caused by untreated coeliac disease can cause less absorption of nutrients. This can cause nutritional problems such as iron-deficiency anaemia and vitamin deficiencies.

Untreated coeliac disease also increases inflammation in the body. This can increase your risk of developing inflammatory conditions in many other areas of the body, including your:

• skin
• joints
• bones
• liver
• pancreas
• thyroid gland
• nervous system

It also increases your risk of bowel lymphoma (a type of cancer) and fertility problems.

Can coeliac disease be prevented?

It is not possible to prevent coeliac disease.

Factors such as when you give children gluten for the first time and how long you breastfeed don't change your child's lifelong risk of developing coeliac disease.

However, early diagnosis and treatment can reduce the chance of experiencing complications of coeliac disease.

Resources and support

Coeliac Australia supports Australians with coeliac disease. Contact your state coeliac organisation for advice and ongoing support by calling 1300 458 836. Become a member for access to research, support, recipes and news.

Making an appointment with a dietitian who specialises in coeliac disease is also useful. They can:

• explain what a gluten-free diet involves
• plan your gluten-free diet with you
• teach you how to read food labels
• make sure you can maintain a balanced diet
• determine if you need dietary supplements

You can find an Accredited Practicing Dietitian through the Dietitians Australia website or at 1800 812 942.

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with you 24 hours a day, 7 days a week.