The Silent Coeliacs

By Katie O’Neill

Seated inside a cafe, next to a display cabinet overflowing with cakes and pies, Kelly Henderson breathed in deeply. Her nose lingered over a warm piece of cherry pie in front of her. She scooped a large piece of pie into a mound of vanilla ice cream and shovelled the whole thing into her mouth. She closed her eyes and leaned back in her chair with a sigh. “Yep. Going to really miss this,” she said.

This was a last supper of sorts for Henderson, triggered by a surprise phone call from her GP two weeks previously. She had been feeling run-down and tired and had gone to her family doctor, who had suggested running a panel of blood tests.

When the GP phoned with the results, they showed low iron, B-12 and vitamin D, which explained her tiredness, but it was what he said next that surprised her.

“He told me my blood test had come back strongly suggestive of coeliac disease,” said Henderson, “and sent me a referral to a gastroenterologist to confirm. To be honest, I didn’t really know what coeliac disease is. When I got off the phone I had to google it.”

Coeliac disease is an auto-immune disease, meaning that the body falsely alerts the immune system to create antibodies that would normally be used to fight foreign cells, but that instead attack healthy cells within the body. In coeliac disease, the trigger for this attack is the protein gluten, found in wheat, barley, rye, oats and malt. When the body finds gluten in the digestive tract, even in trace amounts, it sends these antibodies to attack, causing damage to the small intestine. This can present in physical symptoms including bloating, diarrhoea, constipation, stomach cramps and even a severe itching rash.

What surprised Henderson the most, as she ran down the list of symptoms, was that she had none of these physical manifestations.

The last (gluten) supper. Picture: Kelly Henderson

“I have never reacted to eating bread or any kind of gluten. I literally have toast for breakfast every morning. It was so strange to me that I’d tested positive for this disease that reacts to gluten, but I don’t react to it at all.”

Henderson didn’t realise it at the time, but her experience is consistent with a growing number of people diagnosed with coeliac disease that do not experience classic reactive symptoms. They are often referred to as silent coeliacs. These people are often late to get a diagnosis because their symptoms appear slowly after years of gluten exposure and often don’t relate to the digestive system at all.

When antibodies attack the small intestine, they damage the villi – tiny finger-like projections that coat the walls of the intestine and which help transfer nutrients into the bloodstream. Eventually, these villi atrophy and the small intestine can no longer effectively absorb nutrients. The follow-on effect is a myriad of symptoms caused by malabsorption, including anaemia, depression, chronic fatigue, bone density loss, mouth ulcers and fertility issues.

For Henderson, the knowledge that her body was undergoing continual internal damage was sobering but hard to reconcile with the loss she felt. In the cafe, she scraped the last crumbs from her plate and sighed. She had finished her last supper and tomorrow she would begin her lifelong gluten-free diet.

“People think it’s not that big a deal,” she said. “Just don’t eat bread and pasta. But that’s not it. Gluten is in everything. It’s in soy sauce, curry, noodles, fried batter, and it’s even in stupid unnecessary things like ice cream and chocolate. And ‘cause no one gets that even a crumb of gluten can affect you, there are hardly any safe places to eat out that treat the whole thing seriously. It just feels like it’s going to be really hard.”

Penny Dellsperger is an accredited dietician and health advocacy expert at Coeliac Australia. In both of these roles, she has seen many newly-diagnosed coeliacs and is familiar with the sense of mourning that silent coeliacs like Henderson go through.

“Some people may have been sick for a long time,” said Dellsperger. “So for them it’s actually a relief to find an answer to why they’ve been sick and to know … ‘if I do this, I will get better’.

“But for other people, I think there is often a lot of grief and denial. That transition to gluten-free is hard. It’s not an easy diet. Especially initially, when there is a lot to learn and that transition can be quite difficult for some people. It’s something that impacts you every time you eat. So it’s always there. It’s always on your mind.”

Henderson is not alone in her surprise diagnosis. While it is estimated that 1 in 70 people have coeliac disease in Australia, the figure is distorted by the fact that approximately 80% of people suffering from the disease remain undiagnosed, many of them silent coeliacs.

“That’s why we refer to coeliac disease as a bit of a clinical chameleon,” said Dellsperger. “Because it does seem to mimic the symptoms of lots of other things. And often coeliac disease is not the first thing people think of with those sorts of symptoms.”

Regardless of the presentation of symptoms as classical, non-classical, or even asymptomatic, all coeliacs suffer from some amount of villi atrophy in their intestines. And the consequences of not treating the disease through diet management are severe.

“There are various long-term complications that we need to manage the risk of. So, with osteoporosis, around 75% of adults with coeliac disease will have some impact on their bones when first diagnosed. There is an increased risk of other autoimmune conditions, like thyroid disease and type 1 diabetes. There is also a small but real increased risk of some types of cancer and liver disease if coeliac remains untreated.”

In her freshly-scrubbed, sunlit kitchen, Henderson checked on the gluten-free chocolate cake which was rising in her oven. It was three weeks since she started her new diet and although she was coming to terms with her new lifestyle, she admitted she still found it difficult.

“Some of the gluten-free alternatives at the supermarket are pretty ordinary,” Henderson said. “A lot of things taste dry and stale compared to the original version. I am definitely cooking at home more. And I get pretty frustrated that people don’t seem to understand coeliacs. I went into a cafe yesterday and the gluten-free slice was touching a non-gluten-free cake, which makes them inedible for a coeliac.”

Over at Coeliac Australia, there is hope for the future as they raise awareness of coeliac disease for food manufacturers and commercial kitchens, so that coeliac-safe practices are adopted. They are also raising awareness both with GPs responsible for diagnosis and with the general public, in the hope of reaching the 80% of as-yet undiagnosed coeliacs in the country.

“I think if we had everybody diagnosed then people would take it more seriously,” said Dellsperger. “It would be recognised as a real condition. With your doctor, it would be more of a routine thing, so there would be better management as well.”

And Henderson was not without hope either.

“It’s strange. Already, I feel more alert and more able to think clearly than I have in a long time. I am starting to wonder what else I’ve thought was normal that might disappear as my body heals.”

As she pulled the chocolate cake out of the oven, she contemplated whether the diagnosis was worth it.

“Absolutely. I can’t pretend it has been easy. But knowing how damaged my body is, and how much healing is ahead – it’s the most important thing that has ever happened to me. Everyone says how much better it is now than it was 20 years ago. There is more research, more food options, more recognition. I think it will just keep getting better in the future.”

Feature image: The difference between healthy villi (left) and atrophied villi (right) as found in someone with coeliac disease. Picture:

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