Awareness around coeliac disease has increased in the last few decades and nowadays there’s a better understanding of the disease and more gluten-free products are being introduced into the market than ever before, however, there’s still a long path ahead. According to Coeliac Australia, the autoimmune disease affects an average of 1 in 70 Australians and around 80% of these are untreated or misdiagnosed with other bowel disorders such as irritable bowel syndrome (IBS). On the other hand, many of those who know about their condition find it difficult to socialise, eat out, travel and struggle to find their favourite products in the gluten-free aisle.
This week to celebrate Coeliac Awareness Week (13th – 22nd March) we’ve chatted to 4 influencers who suffer from coeliac disease or gluten intolerance about what it’s like to live with this health issue.
1. Tell us a bit about yourself
Jane @GlutenFreeJoy - I’m a small biz founder in the gluten free space for Gluten Free Joy gift hampers and events/tours and lives in Brisbane. I love blogging about my gluten free/coeliac journey, although I have found dedicating time to it a little hard to find now that the business has picked up momentum.
Elena @a_is_for_apple_au – I’m a stay-at-home mum with two boys, 4 and 9 years old. I love to cook and am very passionate about healthy eating. This has led me to starting my food blog A Is For Apple AU, which I started during the Melbourne lockdown in 2020. I also love sport, especially pilates and playing tennis with my boys.
Daphne @healthygfasian – I’m a full-time blogger with a background in Accounting and Finance. And I live in Sydney, Australia with my family. During my free time, I enjoy reading and listening to music. For regular workouts and fitness, I love to do cardio aerobics, yoga and pilates.
I am the founder and owner of Healthy gf Asian, a gluten free Asian recipes, food and lifestyle blog. My blog started in early 2014 and was crafted to educate, inform, share my recipes and offer healthy and tasty options to people on gluten free and restricted diets. Inspiring them to cook and eat a balanced diet focused on healthy food choices. You can also follow me on my Facebook page and my Pinterest account
Jane @theglutenfreeexplorer – I’m from Melbourne. I’m a teacher but also have a background in creative arts including performing arts and photography. Since being diagnosed I’ve enjoyed getting creative with cooking, baking and food photography as well as posting and writing on my blog, The Gluten Free Explorer and my social media accounts.
2. When were you diagnosed with coeliac disease/gluten sensitivity? What led to your diagnosis?
J – I was diagnosed about 20 years ago after moving to Queensland from Sydney. The high humidity exacerbated my usual low energy levels, leading to chronic fatigue. Eventual diagnosis via an endoscopy followed.
E – Although I don’t suffer from coeliac disease, I am gluten intolerant and eating gluten means I have to live with chronic pain. Prior to my intolerance diagnosis, I was diagnosed with arthritis. Cutting a very long story short, gluten causes inflammation in my joints which leads to very bad back and hip pain. Eliminating gluten from my diet made my symptoms go away and allowed me to go back to my usual active lifestyle.
D - I was diagnosed with Irritable Bowel Syndrome (IBS) and lactose intolerance by my gastroenterologist in 2009 when I was suffering from severe bloating after nearly every meal. After trying out elimination diets, my IBS symptoms did not improve.
In late 2013, I discovered that I have Non-Celiac Gluten Sensitivity (NCGS) after eliminating gluten from my diet as advised by another doctor. People with NCGS suffer from the same symptoms as celiac disease sufferers but have no intestinal damage. Normally, NCGS symptoms will settle through a strict gluten free diet.
J - I was diagnosed about 10 years ago now. What led to my diagnosis was that I was feeling extremely tired, constantly flat and often bloated. It took a long time to be diagnosed and at the time I didn’t really know much about coeliac disease and how important it was to stick to a strict gluten free diet. So safe to say it was a massive lifestyle change!
3. How did you feel after being diagnosed with coeliac disease/gluten sensitivity?
J - So much started making sense regarding life-long health issues, including iron deficiency, migraines, skin issues and mouth ulcers.
E - I was relieved to find out what caused my pain.
D - Since the diagnosis of NCGS, IBS and lactose intolerance, I have been following a gluten free and dairy free diet and my IBS symptoms have improved drastically. I am now able to eat and enjoy my meals without having to feel unwell all the time.
J - I stopped feeling so tired and flat and started to feel like myself again! I later found out that my coeliac disease was causing me to be iron anaemic so when that was sorted, it definitely helped me to slowly feel good again!
4. What resources helped you when you were first diagnosed with coeliac disease?
J - There was very little. I didn't sign up to Coeliac Australia until 10 years after diagnosis, but really wished I had from the start as they are of course a fantastic resource.
E - I had enough knowledge about nutrition to be able to change my diet myself. I also found a lot of inspiration on Instagram and on various food and health blogs.
D - Online resources like medical and health websites have helped me better understand IBS and NCGS as well as what I need to do to maintain a healthy digestive system by going on a gluten free diet.
J - There weren’t as many resources around back when I was diagnosed but doing some of my own research and reading of labels was important. Coeliac Australia was also very helpful to learn new things about Coeliac disease and how to cope with my very new lifestyle change.
5. What impact has having coeliac disease or gluten sensitivity had on your day-to-day life?
J - Spontaneity is of course limited. Planning and researching is needed for any social activity or travel. This was a big reason I started the Gluten Free Joy blog, and the various businesses to help other coeliacs find wonderful foodie experiences without having to miss out. It is really hard feeling isolated at social events and occasions because you can't share in the communal food experience along with everyone else, and the mental health journey of a coeliac cannot be underestimated.
E - It took me a while to adjust to my new day-to-day life, but the benefit of pain-free life was enough motivation for me to not to be too upset about the situation. My diet was always built around vegetables, legumes and healthy proteins so I didn’t miss products that contain gluten too much.
D - Biggest impact on my daily life after having IBS and NCGS is having fewer food choices especially not being able to eat gluten-based food that I used to love like dim sums, breads, pizzas, cakes, KFC etc. Very limited choices of ready-made gluten free food are available. I have to make my own meals most of the time and since gluten is added to almost all food items, I must be like a food label detective when doing food and groceries shopping.
J - Experiencing food anxiety at times, not always being able to share food, always reading labels, not having as many takeaway options as you would like, being very careful with everything I eat, always being prepared with snacks and sometimes missing out! However, always being excited to experience new coeliac safe adventures! Everyone that has Coeliac disease has different reactions if ‘glutened’ but if I am ‘glutened’ I am sick for 3 to 5 days!
6. Do you feel awareness around coeliac disease has increased in the past few years?
J - Awareness has definitely increased, but there is still a long way to go. Having Coeliac Awareness Week each year is definitely helpful.
E - I think awareness has increased in the last couple of years and there are more gluten-free products on the market, but there's certainly a need to increase the understanding that coeliac (and gluten intolerance) is not a fad diet. There are many people who think that gluten-free life is some kind of choice people make. Many people don’t take it seriously.
D - Knowledge and understanding about coeliac disease and NCGS have improved over the past few years but there is plenty of room for improvements. Especially in relation to educating family, friends, schools, universities, restaurants, shops and workplaces regarding what gluten is and the strict gluten free dietary requirements of sufferers.
J - Yes, I definitely think things have changed in the last few years and more people are aware of what Coeliac disease is. However, I think there is still a long way to go in terms of food education and awareness. Especially when it comes to cross contamination and what is safe for people living with Coeliac disease. I still meet a lot of people who don’t really understand what Coeliac disease really is.
7. Do you find it easy going out to restaurants?
J - It is usually very stressful when eating out unless you have managed to find a 100% gluten free eatery. The issue of cross contamination is very real, and the need to question staff about their specific food handling management to determine whether the meal is likely to be coeliac safe can be emotionally exhausting.
E - I find it is easy to dine out. People in restaurants are usually very friendly and helpful. I think it is also easier for me to dine out because my disease is mild compared to people with coeliac. Light contamination won’t cause me much trouble.
D - I find eating out continues to be a big challenge due to cross contamination issues as few restaurants owners and chefs fully understand what gluten really is and the fact that gluten free food needs to be prepared and stored separately in a dedicated kitchen area using different equipment and utensils away from gluten food to avoid cross contamination.
Although there are now a few gluten free restaurants and shops offering a gluten free menu in Australia and overseas, eating out proves difficult and almost impossible. This is mainly due to limited number of dedicated strictly gluten food restaurants and shops. If they serve both gluten and gluten free food, cross contamination problems remain, especially when retailers are not sure what gluten is. Ongoing education on serving gluten free food is still crucial on whether eating out is safe especially for celiac disease sufferers.
J - If it is a Coeliac safe restaurant then yes! However, most of the time I have to put a lot of time and energy into researching restaurants and their menus. I also find I have to ask many questions when I get to the eatery, sometimes they cannot guarantee gluten free options being safe for those who have Coeliac disease which unfortunately sometimes means missing out.
8. What tips do you have for people with coeliac disease eating out?
J - Obviously doing pre-research is important, asking about their specific food preparation for any gluten free options. I do use enzyme tablets whenever eating at non-100% gluten free venues, as there is always a risk of cross contamination even if you feel they have good knowledge of CC practices.
E - Always let the waiters know about your dietary restrictions. I found that people are very happy to help you to make the right choices.
D - When eating out at family or friend’s house, attending special events like weddings or birthdays, and dining out at a restaurant, always plan ahead. Keep in mind to call in advance to chat with the person cooking the food and if gluten free options will be offered to you. Take your own gluten free sauces e.g., gluten free light soy sauce in Asian restaurants, for them to cook with if possible. Ensure that you take some gluten free snacks with you at all times in case no gluten free foods are available. If you must eat out at work and can’t find gluten free food, you can cook more for dinner and take the leftovers the next day for lunch.
J - Review the menu online and or call ahead first. Don’t be afraid to ask questions. At the end of the day it’s your health at risk and you don’t want to be sick! -If you aren’t sure or you’re not comfortable it’s not worth the risk eating there! -Take snacks in case you can’t eat there.
If you’ve enjoyed this article, don’t miss out on Part 2 of the interview to find out about how our interviewees handle shopping at supermarkets and travelling abroad and some of their favourite products and brands.