Coeliac, Shmeeliac

Sue Black has a very special job. She helps people with coeliac disease understand their diagnosis and the gluten-free diet as part of her role at the Coeliac Society of Australia. There, she documents the many amazing stories she receives for the readers of the society’s quarterly magazine.

Sue speaks with Cook My Way to get the gluten-free message across to more GF eager beavers.

CMW: What exactly is coeliac disease?

SB: Coeliac disease is an autoimmune disease caused by gluten, a protein found in wheat, rye, barley and oats. Left untreated, coeliac disease causes damage to the lining of the small intestine which can result in long term health complications.

The only treatment for coeliac disease is the strict, lifelong avoidance of gluten in the diet.

CMW: What is the difference between coeliac disease, gluten intolerance and having an allergy to gluten?

SB: Coeliac disease is a well-defined medical condition. Specific tests are available to diagnose coeliac disease and appropriate medical and dietary follow up is important.

While gluten intolerance can cause unpleasant symptoms, the immune system is not involved and no physical damage is caused to the body. So the gluten free diet only needs to be as strict as is necessary to control symptoms.

Food allergy is the most serious form of reaction to food and can be life threatening. Allergies are specific reactions resulting from an abnormal and exaggerated response to food proteins. Allergy to wheat is quite rare and requires management and advice from an immunologist.

CMW: What are common misconceptions that people hold about coeliac disease?

SB: There is a misconception that a little bit is ok. Even 1/100 of a slice of bread can do damage and if continued can lead to other more serious complications.

CMW: The diet sounds close to impossible to maintain. What's it like being on a strict, gluten-free diet and how do sufferers do this?

SB: Fresh fruit and vegetables, unprocessed meats, milk and a whole range of other unprocessed foods are naturally gluten free – so this a good and healthy place to start.

Australian labelling laws also require gluten to be declared if it is present in a product, so identifying and avoiding gluten containing ingredients is easy once you know how.

For most people with coeliac disease if they stray from the diet at any stage maybe to sneak a fresh sandwich or a glass of beer, they will soon know it. So it is really not worth it.

CMW: What are the signs or symptoms of coeliac disease?

SB: The symptoms of coeliac disease vary considerably. Common symptoms include iron deficiency, gastrointestinal symptoms, headaches, osteoporosis, infertility and weight loss.

A diagnosis of coeliac disease should not be made on blood test alone. A gastroscopy should be performed to confirm coeliac disease. The most important thing to remember is to NOT commence a gluten free diet prior to being tested. If you do, the testing will not be reliable.

CMW: We all have that annoying friend who pesters waiters about menu specifics. What are the social issues they would face when eating out and travelling?

SB: To be able to ask a restaurant for a gluten free meal and explain what gluten free actually is can be hard work. However, more and more cafés and restaurants are providing gluten free options on their menus making us more confident about going out.

As for travelling, there are many countries now that have knowledge of the gluten free diet and cater accordingly. It is rare to find coeliac disease in Asia and many countries of Africa but with their newfound knowledge, travellers can visit these countries comfortably.

CMW: What are some positive things about being on a lifelong, permanent gluten-free diet?

SB: Once people have been properly diagnosed and start to follow a gluten free diet, they can have more energy, not feel so tired and may not be as irritable.

CMW: What’s your favourite naturally occurring gluten-free food?

SB: The avocado does the trick. We have not used margarine or butter for our sandwiches for years. What I haven’t tried yet and would love to find the recipe for is chocolate mousse using avocado and cocoa. Apparently, you can’t tell the difference!

Interviewed by Aimee Wagenheim

For help with adjusting to the gluten-free diet, visit www.ctrlalteat.org