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Condition
Coeliac disease
Coeliac disease is common, most people who have it do not know, and the symptoms can be anything from bloating and diarrhoea to tiredness and low iron with no gut symptoms at all. Getting the diagnosis right matters, because the treatment is for life. In Sydney, A/Prof Kariyawasam confirms the diagnosis with biopsies taken at gastroscopy and follows people up afterwards.
What coeliac disease is
Coeliac disease is an immune reaction to gluten, a protein in wheat, barley, rye and oats. In people who are genetically susceptible, gluten triggers inflammation that damages the lining of the small bowel and reduces its ability to absorb nutrients. About one in 70 Australians has it, but only around one in five of those have been diagnosed.
It is not an allergy and not the same as gluten sensitivity or intolerance. It runs in families: parents, brothers, sisters and children of someone with coeliac disease have a much higher chance of having it too and should be tested.
The symptoms, including the ones outside the gut
Some people have obvious gut symptoms: diarrhoea, bloating, wind, abdominal pain or weight loss. Many do not. Coeliac disease can show up instead as:
- iron deficiency that does not respond to tablets
- tiredness, low vitamin B12 or folate
- early osteoporosis
- abnormal liver tests
- an itchy blistering rash called dermatitis herpetiformis
- symptoms that have been put down to irritable bowel syndrome
How it is diagnosed
Do not stop gluten before you are tested
Both the blood test and the biopsy depend on the immune reaction to gluten. On a gluten-free diet they can return to normal and the diagnosis can be missed. If gluten has already been stopped, Coeliac Australia advises adults to eat about 10 grams of gluten a day, roughly four slices of wheat bread, for at least six weeks before testing.
- Blood tests: tissue transglutaminase antibodies, with total IgA to make sure the result can be trusted, and sometimes other antibodies.
- Gastroscopy with biopsies from the duodenum confirms the diagnosis. It is a short procedure under sedation. There is more on the gastroscopy page.
- Gene testing for HLA-DQ2 and DQ8 cannot diagnose coeliac disease, but a negative result makes it very unlikely. It is useful when gluten has already been stopped or when the other tests disagree.
How coeliac disease is treated
The treatment is a strict gluten-free diet for life. There is no safe amount of gluten for someone with coeliac disease, even without symptoms, because the damage continues. A dietitian experienced in coeliac disease makes an enormous difference, particularly in the first months.
Most people feel better within weeks, although full healing of the bowel lining can take much longer in adults.
Follow-up
Follow-up checks that the diet is working and looks for the complications of coeliac disease:
- repeat antibody tests, which should return to normal on a strict diet
- a follow-up gastroscopy with biopsies at about 12 months, to confirm the bowel lining has healed
- iron, vitamin B12, folate, vitamin D and calcium
- a bone density scan, as bone thinning is common at diagnosis
- vaccination against pneumococcus, as coeliac disease can reduce the spleen's function
- testing of first-degree relatives
If symptoms persist or come back despite the diet, the most common reason is gluten getting in unnoticed. Other conditions that travel with coeliac disease, such as microscopic colitis, lactose intolerance or bacterial overgrowth, are also considered, and an earlier repeat gastroscopy may be needed.
Where coeliac disease is diagnosed in Sydney
A/Prof Viraj Kariyawasam is a consultant gastroenterologist and hepatologist. Coeliac testing, confirmation and follow-up are handled at consultation in Norwest, Rouse Hill, Pennant Hills and Macquarie Park.
The gastroscopy with duodenal biopsies is performed at Norwest Private Hospital, Macquarie University Hospital and Pennant Hills Day Surgery. A referral from your GP is needed for a consultation.
Related pages
Common questions
The questions people actually ask, answered plainly.
I have already gone gluten-free. Can I still be tested?
Yes, but the blood test and biopsy are only reliable while you are eating gluten. Coeliac Australia advises adults to return to gluten for at least six weeks before testing, aiming for about 10 grams of gluten a day, roughly four slices of wheat bread. A gene test can help decide whether this is worth doing, because a negative result virtually rules out coeliac disease. A positive gene test does not confirm it.
My blood test was positive. Do I need a gastroscopy?
In adults in Australia, yes. The biopsy confirms the diagnosis before committing to a lifelong diet and gives a baseline for follow-up. Keep eating gluten until it is done.
Is coeliac disease the same as gluten intolerance?
No. Coeliac disease is an immune reaction that damages the small bowel and has long-term consequences if untreated. Gluten sensitivity causes symptoms without that damage. The tests are designed to tell them apart, which is why they need to be done before stopping gluten.
Should my family be tested?
Yes. Parents, brothers, sisters and children of someone with coeliac disease have a much higher chance of having it, often without symptoms, and should have a blood test.
Can a little gluten hurt if I feel fine?
Yes. Damage to the bowel can continue without symptoms. A strict gluten-free diet is the only treatment, and there is no safe threshold for someone with coeliac disease.
Can I eat oats?
Possibly, but discuss it with your doctor first. Oats contain a protein called avenin that some people with coeliac disease react to, and ordinary oats are often contaminated with wheat. Coeliac Australia now encourages people to talk to their medical team about whether pure, uncontaminated oats suit them. In Australia, foods containing oats cannot be labelled gluten free.
Can you develop coeliac disease as an adult?
Yes. It can develop at any age, and many people are diagnosed as adults, some with only mild symptoms or none. About one in 70 Australians has coeliac disease, and most of them do not yet know it. A normal blood test in the past does not rule it out if new symptoms or low iron appear later.
How long does it take to get better on a gluten-free diet?
Symptoms often start to settle within weeks, but full healing of the bowel takes much longer, particularly in adults. Blood tests are usually repeated every few months at first, then yearly once things settle. A follow-up gastroscopy is usually done at about 12 months to confirm the bowel has healed.
Why do I still have symptoms on a gluten-free diet?
The most common reason is small amounts of gluten getting in without you realising, from sauces, stocks, shared toasters or eating out. The bowel can also be slow to heal, and sometimes another condition is responsible. Talk to your doctor rather than cutting out more foods yourself. A review with a dietitian who knows coeliac disease and a repeat blood test are sensible first steps.
Do I need a separate toaster or kitchen?
You do not need a separate kitchen, but a few habits help. Use your own toaster or toaster bags, keep your own spreads or use a clean knife each time and drain gluten-free pasta in a separate colander. Clean benches, boards and utensils before preparing your food. Sharing a dishwasher and oven is fine, because gluten spreads by direct contact rather than through heat or steam.
Where these figures come from
- Coeliac Australia
- Gastroenterological Society of Australia, patient information
- healthdirect, coeliac disease
- Coeliac Australia, gluten challenge
- Coeliac Australia, oats
- Coeliac Australia, managing cross contact at home
This page is general information. It is not advice about your own situation, and it is not a substitute for seeing a doctor. If you have symptoms, see your GP.
Make an appointment
Appointments are booked through the rooms directly. Have your GP referral ready when you call or ask your GP to send it ahead. Urgent inflammatory bowel disease, rectal bleeding and positive bowel screening referrals are prioritised.
Norwest & Rouse Hill (02) 8530 1800 Pennant Hills (02) 9875 2311 Macquarie Park (02) 9812 3880