Coeliac disease is a medically diagnosed condition of an intolerance to gluten in the diet. Gluten is the protein component of wheat, rye, barley and *oats. In people with coeliac disease, after consuming gluten, the small intestinal lining (villi) becomes inflamed and the normal appearance changes so that it has a flattened appearance. A strict gluten-free diet can reverse these abnormalities, and is the only recognised treatment for coeliac disease.
*Note: Oats are considered to contain gluten in Australia, but some other countries do not consider there to be gluten in oats.
Prevalence of coeliac disease is likely to be underestimated in Australia, and is probably in the order of 1 in 70, with diagnosis rates increasing. Coeliac disease also occurs in 10% of first-degree relatives. More than 99% of people with coeliac disease have the genetic profile of HLA DQ2 or DQ8.
For additional information, take a look at the Coeliac Card
It is becoming increasingly evident that there is indeed a broad spectrum of presentations of coeliac disease. Increasing numbers of adults are being diagnosed, whereas years ago it was considered to be a disease that was only diagnosed in children. Coeliac disease can present at any age, and the variability and often vagueness of symptoms can present a diagnostic challenge to many medical practitioners.
Presentation can include gastrointestinal symptoms such as:
Alternatively, it may present with no gastrointestinal symptoms at all.
Other symptoms can include:
The gold standard for diagnosis is a small bowel biopsy (the doctors will look for histological evidence of villous atrophy +/- infiltration of lymphocytes). This involves a special camera being passed down the oesophagus, past the stomach, and into the first part of the small bowel. There, small samples of the lining of the small bowel are taken and investigated under the microscope. If the biopsy samples show flattening of the lining, then it confirms coeliac disease.
There are some blood tests that can be performed to help screen for coeliac disease in “at risk” populations (eg. family members, people with diabetes, etc). However these are generally not ideal for diagnosing coeliac disease, as there can be false positives and false negatives. Blood tests including IgA tissue transglutaminase antibody tests and IgG Deamidated Gliadin Peptide can be ordered (“coeliac serology”). A Total IgA antibody test should also be performed to help validate tissue transglutaminase results. The small bowel biopsy is still considered the best method for diagnosing coeliac disease.
Once the diagnosis of coeliac disease has been made, the following tests are recommended if not already completed: full blood examination, iron studies, folate, vitamin B12, zinc, vitamin D levels and bone mineral density. Some people with Coeliac Disease can also have lactose intolerance, fructose malabsorption, problems with their thyroid gland (underactive, overactive), diabetes, etc, and may require further investigation.
There is no role for a trial of Gluten-Free diet without a preceding biopsy.
It is important that people in the process of being investigated for coeliac disease continue to eat gluten in their diet. If they remove gluten from their diet (eg. trial a gluten free diet) before being properly diagnosed, they can reduce their chances of being diagnosed, as the villi/lining can start to repair. Small bowel biopsies of a person who has already started the diet might then show to be normal – but this may not be an accurate result as the villi may be repairing. Therefore, all people who look suspicious for coeliac disease (eg. have symptoms, etc) should still be eating gluten whilst being investigated by their doctor(s).
Coeliac disease is a life-long condition and there is currently no cure. The only treatment available is a diet free from all gluten. A gluten-free diet for coeliac disease prevents further damage to the intestinal lining, allowing villi to heal so that nutrients from food can be properly absorbed. People need to follow the diet even if they are not unwell with symptoms. It must be strict and life long – people cannot take a break every now and then and have a bowl of regular pasta, or a slice of regular bread.
Ongoing monitoring is important. People’s villi usually grow back and return to normal, but time for this to occur can range from months to years. People need to remain on their diet for life – even if the villi grow back. In this sense, people are only treated, they are not cured. The diet is for life (until a cure is found – and the doctors are working on it!)
If left untreated, people with coeliac disease can be at an increased risk of bowel cancer, osteoporosis, infertility, miscarriages and chronic ill health. The risk of all of these returns to normal on a gluten free diet.
The gluten-free diet is a life-long diet, and strict dietary compliance is essential, even in the absence of symptoms. A gluten free diet involves a lot more than just avoiding regular bread and wheat-based pasta. It is very involved. Despite this, there are plenty of foods you can enjoy! As the diet must be strict and life-long, but to also help ensure you are enjoying your diet safely, it is recommended you see a dietitian with experience in coeliac disease.
All people diagnosed with coeliac disease are encouraged to join Coeliac Australia (www.coeliac.org.au). There are organisations for each State, providing a valuable source of support and new food product information. Members receive a quarterly magazine, handbook and ingredients book. Events such as cooking demonstrations, group dietitian sessions, children’s camps, and social evenings are regularly offered. As information about the gluten-free diet can change over time, maintaining membership of Coeliac Australia should be for the long-term, to ensure ongoing access to up-to-date information.
The gluten-free diet can be challenging and difficult, especially for the first few months following diagnosis, but it progressively becomes easier with familiarity with the diet and as the foods available grows over time. To assist further, Dr Sue Shepherd has created hundreds of great tasting gluten-free recipes, available in her cookbooks, which can be found in the online shop click here
For expert dietitian advice, please book an appointment with one of the Shepherd Works dietitians on +613 9890 4911, or click here to submit an appointment enquiry online.
Day time and early evening appointments are available. For people who live interstate, overseas or are unable to make it to one of our practice locations, Shepherd Works offers a phone consultation service – please phone +613 9890 4911 to arrange.