Freedom from Gluten – The Insider’s Account of a Coeliac’s Life

Signs of the Times assistant editor Daniel Kuberek speaks with Sydney mum Kylie Banks, who lives with coeliac disease.

Daniel: What is gluten?

Kylie: It’s a component in wheat to which people with coeliac disease react. For someone like me, I can’t consume it. I can’t have my food prepared where any trace of gluten is present. I can’t buy food that’s produced in the same factory that processes gluten. So, for example, rolled oats (to my understanding), they don’t necessarily have the gluten in them, but they’re prepared in the same factory as wheat. For me, I would need to buy gluten-free rolled oats—and they just happen to cost significantly more. As a rule of thumb, I just remember the acronym BROW: Barley, rye, oats, wheat. They’re the main things where you’re going to find gluten.

Daniel: What happens when you eat gluten?

Kylie: Since my diagnosis I’ve had a couple of unintentional mishaps. I ordered some chips once. I thought I’d done all my due diligence with the shop; it was early on after my diagnosis too. I said to them, “I’m coeliac, I cannot have gluten” and then I explained to them what happens when I do. Basically their chips were my only option. I asked them, “Do you have a dedicated chip frier so there’s no batter that’s going in there?” “Yep, we do, no problems.” I thought I was pretty safe.

They were really good chips and I chowed down big time. I had them in the afternoon and by that evening I was feeling absolutely rotten. I went on and did some research, turns out that a lot of chips have wheat added to them. They do it so the chips aren’t so stodgy and that’s why they taste so good too.

It took me three months to put that behind me. My stomach felt bloated—it felt like I had two or three footballs in there. Stomach pain, lots of going to the toilet, very soft faeces. I would become so tired, just absolutely smashed. There’d be days where I couldn’t get out of bed; I wouldn’t be awake until 7pm at night and then I’d be back in bed a few hours later. Also, I had a really foggy head—meaning I was ineffective at work and home. It puts a big strain on my family life. Someone’s got to pick up the slack when you’re like that.

Daniel: If that was just one instance, what would happen if you kept eating gluten?

Kylie: If I ate it on a long-term basis, I’d develop all sorts of complications. Just a teaspoon of gluten will take a coeliac more than three months to get out of their system. Coeliacs can suffer from malnutrition because they’re not absorbing the nutrients from their food. They’re susceptible to osteoporosis and also kidney failure.

I remember talking to a girl who was diagnosed when she was 18; she ended up in hospital with kidney failure because while she was studying for her high school certificate, she had a cheese toastie binge. You can be susceptible to a whole lot of cancers if you’re not dealing with your coeliac disease properly. You can also have thyroid problems. It is an auto-immune disease and there are plenty of complications that can come from that.

Daniel: It’s all about the gut and how it absorbs gluten right?

Kylie: My doctor told me in the intestine there’s these bumpy, finger-like structures called villi. They help you absorb fats, sugars and more. In someone with coeliac disease, those villi are so damaged they’re almost non-existent. Your intestine wall is almost smooth. For 12 months, I’ve abstained from not only gluten, but also dairy, sugars and fructose—all until my villi heal.

I was diagnosed earlier in 2020 and I remember getting the phone call from my GP and just hearing, “Did you know you’re a raging coeliac?” I’m sort of like, what? It had never been flagged before. My doctor said to me with these kind of test results I would’ve been a coeliac all my life.

When I told my mum, she said, “Huh, that kind of makes sense. When you were a baby, you used to get all these diabolical pooey nappies about eight times a day. We took you to a doctor and he diagnosed you with a lactose and gluten intolerance.”

They were living in Papua New Guinea at the time. She said they put me on a special diet for six months and it all seemed to clear up. So she thought I was fine and took me off the diet. But throughout my life
up until my diagnosis, I honestly thought I was going nuts. I was so fuzzy, I could not concentrate, I had the attention span of a gnat.

Daniel: Can you move from being gluten intolerant to having coeliac disease?

Kylie: Given the right circumstances— the perfect storm —including consuming large amounts of gluten for an extended period of time, combined with a huge stress increase in your life, you could move from being intolerant to coeliac. If you already have a susceptibility to gluten intolerance, you need to cut back on gluten. It’s your body’s way of saying, “I can tolerate a little bit of that, but don’t overload me with it.” You can always get tested by a doctor. Initially it’s a simple blood test, but to my understanding, coeliac disease can’t be diagnosed without a gastroscopy. They need to have a look at your intestines and your villi.

Daniel: What do you recommend to readers who might suspect they have a gluten intolerance?

Kylie: I would go and get the blood test done. Go to your GP and request they give you a referral. On
a long-term basis, you can really do some serious damage to your body if you are feeling bad and you are in fact coeliac. If indeed you are coeliac, you are going to feel so much better once your body is able to get rid of the last traces of gluten in your body and then start to repair itself.

Daniel: Where can people buy gluten-free food?

Kylie: These days, supermarkets have a pretty good health food section. There are some great wholesale distributors now that sell a lot of really good gluten-free food. You’ll also find some good food at a health food shop. But it’s important—if you are coeliac—when buying food online and you can’t read the ingredients or fine print (any “may contain” labels), you have to be careful if that is food that’s appropriate for coeliacs. You can also find some good resources on the Coeliac Australia website. They send you a box full of food as part of your membership package.

Kylie Banks is a former primary school teacher. She currently works for Mums at the Table and runs her own socially responsible corporate gifting company.

Information in this article is of a general nature and does not substitute the directions of a general practitioner. Please refer to your doctor if you have any questions or suspect you have a gluten intolerance or coeliac disease.