Coeliac disease

Sounds like 'see-lee-ak'

Coeliac disease is a permanent autoimmune disorder that causes a reaction to gluten, which is found in wheat, barley, rye and oats.

This page focuses on coeliac disease in general. Find out about coeliac disease in children.

Key points

  1. The immune reaction makes part of your gut inflamed and can lead to a range of symptoms and nutritional problems.
  2. Coeliac disease can develop at any stage in life. It has a strong genetic tendency, so often runs in families.
  3. It affects at least 1 person in 70, although perhaps as many as 4 out of 5 people who have the condition don’t know they have it.
  4. Because the symptoms are similar to those of other gastrointestinal (gut) diseases, diagnosis of coeliac disease can be difficult. 
  5. There is no known cure, but following a gluten-free diet allows most people to return to normal health.

What is gluten?

Gluten is a protein that is found in many grains such as wheat, barley, oats and rye. These grains are often used to make breads, pasta and cereals. Because many corn and rice products are produced in factories that also manufacture wheat products, they can also be contaminated with wheat gluten.

Hidden sources of gluten include additives such as modified food starch, preservatives and stabilisers made with wheat. Gluten may also be found in everyday products such as medicines, vitamins and lip balms.

What causes coeliac disease?

Coeliac disease is caused by an abnormal reaction by your immune system to the protein gluten.

  • Your immune system mistakes gluten as a threat to the body and, in an attempt to protect your body from the threat, it creates special gluten-fighting antibodies to fight it.
  • In your gut, these antibodies cause inflammation and flattening of tiny, finger-like projections called villi, which line the inside of your small bowel.
  • The villi are responsible for absorbing nutrients and minerals from food.
  • Damage of the villi can lead to nutritional deficiencies (low levels) of iron, folic acid and calcium.

If undiagnosed, the condition can cause long-term poor health and other less common effects such as:

It's important to see your doctor if you think you may have the condition.

Who gets coeliac disease?

Coeliac disease can develop at any stage in life, from infancy to old age. It occurs in family groups and has a strong genetic tendency.

  • Around 10% (1 in every 10) of all first-degree relatives (parents, brothers, sisters or children) of people with coeliac disease also have the condition.
  • If one identical twin is affected, the other twin is almost certain to be affected.

Environmental factors are also believed to play a role in the development of the condition, although the exact nature of these remains unclear.

What are the symptoms of coeliac disease?

The symptoms of coeliac disease are different for everyone, depending on your age and degree of damage to your bowel. They can be similar to those of several other conditions, such as irritable bowel syndrome, which can complicate diagnosis.

In adults, common symptoms include:

  • diarrhoea, which may begin at any age and is often present for years prior to diagnosis – it may first appear after other illnesses such as a tummy bug (gastroenteritis) or following significant health events such as surgery or pregnancy and childbirth
  • tiredness, weakness and lack of energy
  • weight loss
  • constipation (some are more likely to experience constipation rather than diarrhoea)
  • flatulence (wind, gas) and abdominal tightness
  • cramping and bloating
  • nausea and vomiting.

Anaemia is also more common in people with coeliac disease, particularly anaemia due to iron or folic acid deficiency. The anaemia will either not respond to treatment, or will come back after treatment until the underlying cause (ie, coeliac disease) is identified and treated.

Less commonly, adults may experience:

  • easy bruising of your skin
  • ulcerations and/or swelling of your mouth and tongue
  • miscarriages and infertility
  • low blood calcium levels with muscle spasms
  • vitamin B12, A, D, E and K deficiencies
  • skin rashes such as dermatitis herpetiformis
  • altered mental alertness
  • bone and joint pains.

Symptoms in children

In children, symptoms do not appear until gluten-containing foods are introduced into the diet. It is also possible for symptoms to appear later. The common symptoms include:

  • large, bulky, foul-smelling bowel movements (poo, stool)
  • diarrhoea or constipation
  • poor weight gain
  • weight loss in older children
  • iron deficiency anaemia
  • stunted growth
  • bloated tummy, pain and flatulence
  • nausea and vomiting
  • irritability.

How is coeliac disease diagnosed?

Because the symptoms of coeliac disease are similar to those of many other gastrointestinal diseases, the diagnosis of coeliac disease can be challenging. Blood tests and a gene test can screen for who is most likely to need a bowel biopsy, which is the only way of knowing for certain whether someone has coeliac disease.

It is important to keep eating gluten until after diagnosis. If the gluten-free diet is started before diagnosis, this may affect the accuracy of investigations such as blood tests and biopsies.

Feeling better on a gluten-free diet is not enough to confirm the diagnosis of coeliac disease.

 

Diagnostic tests for coeliac disease

Blood tests
  • A range of blood tests that measure antibodies to gluten are a useful way of identifying who might need further tests.
Bowel biopsy
  • The only way of knowing for certain if someone has coeliac disease is by showing that the lining of your small bowel is damaged. 
  • This is done performing a bowel biopsy, a procedure in which a tiny sample of your bowel lining is taken for analysis.
  • If a diagnosis of coeliac disease is made, the small bowel biopsy will sometimes need repeating at some point after starting a gluten-free diet, to check that your bowel lining is recovering.
Gene test
  • A gene test is available that can help identify people who may be at risk of developing the condition, but on its own is not enough to confirm the diagnosis.
  • This test is most helpful when it is negative, because this means it is 99% certain that you won't develop coeliac disease.

How is coeliac disease treated?

There is no known cure for coeliac disease. The only treatment is following a gluten-free diet, which allows most people to return to normal health.

  • A gluten-free diet means a lifelong, no-exceptions diet, leaving out all foods containing wheat, rye, barley, triticale and oats.
  • Oats can cause a reaction in some people with the condition, so they are not safe to include in a gluten-free diet even if they are labelled as ‘gluten-free oats’.
  • Children and younger people recover quite quickly after starting a gluten-free diet (usually within 6 months), but older people may take longer to recover.
  • Nutrients such as iron, folic acid and some vitamins may need to be replaced at the start of treatment.
  • It can be a good idea to cut down on cow’s milk in your diet at first, so your bowel can build up its levels of the enzyme lactase, which helps you digest the lactose in dairy products. Read more about lactose intolerance.

If you have coeliac disease and eat gluten, damage to your small bowel will still happen, even if you don't have symptoms. For this reason, you must stay on a strict gluten-free diet for life.

What are the autoimmune conditions associated with coeliac disease?

People with coeliac disease are genetically predisposed to developing some other autoimmune conditions, or already have these conditions when they are diagnosed with coeliac disease. This is because it is likely there is a common gene link between these conditions.

The associated autoimmune conditions include:

So if you have coeliac disease, talk to your GP about whether you have the symptoms of any of these conditions, particularly thyroid disease, as this is the most common.

Support

For more information, contact Coeliac New Zealand, a support group for adults and children with coeliac disease.

  • Membership benefits include a regular magazine, along with telephone support and assistance.  
  • New members are provided with a manual containing information on the condition, the gluten free diet, where to shop, recipes and helpful advice to make the change from gluten to gluten-free as easy as possible. 

You may be able to get a subsidy for your gluten-free food and a disability allowance to help with your health-related costs. Read about subsidies and allowances for coeliacs

Learn more

What is coeliac disease? Coeliac New Zealand
Coeliac disease overview University of Chicago Celiac Disease Center, US

Reviewed by

  Dr Derek Luo is a consultant gastroenterologist at Counties Manukau Health and has also been in private practice since 2011. He has a broad interest in general gastroenterology and hepatology and has a sub-specialty interest in pancreatic and hepatobiliary disease.
Credits: Health Navigator Editorial Team. Reviewed By: Dr Derek Luo, MBChB (Otago) FRACP, Consultant Gastroenterologist Last reviewed: 23 Sep 2016