Coeliac Disease is not just a fad

Imagine being in a supermarket and not being able to buy a loaf of bread, cake, or packet of biscuits that you can eat without it causing stomach bloating, intense pain, mouth blisters, and diarrhoea.

Imagine trying to make a loaf of bread that doesn’t taste like cardboard or over-cooked porridge and only rises to half the size of a normal loaf. My attempts were laughingly described by my family (and me) as “stodge”.

Imagine going to a café or restaurant and the only gluten free item on the menu is salad, or asking if your meal selection could be made gluten free would lead to a bewildered look and a shake of the head. This was the predicament I found myself in thirty-one years ago when I was diagnosed with Coeliac Disease. After years of having symptoms that didn’t seem to have a medical explanation I’d become quite ill and was losing weight fast, so to finally have an explanation was a relief. My gastroenterologist said that my body had obviously been trying to cope with gluten all my life but had eventually given up.

I’d never heard of coeliac disease before but quickly learned that it’s a common but under- diagnosed immune-based condition in which the immune system reacts to gluten by attacking itself. This results in inflammation that can lead to many different symptoms. At last I understood the reason for many of the health problems that had plagued me.

I joined the Queensland Coeliac Society, attended their yearly conferences, and learned a lot about this mysterious disease. At one conference the then-president of the Australian Coeliac Society (now Coeliac Australia) revealed how when he was in medical school there was little taught about coeliac disease but when he entered private practice he had some coeliac patients and he took an interest in them. He said it was lucky he had, because it led him to realise that he was also a coeliac.

Another member said she was one of eleven children and nine of them were coeliac. No, it’s not contagious, but it does run in families, though not everyone at genetic risk will develop the disease.

The Society Secretary at the time also revealed that her only symptom was anaemia, but her doctor knew that was a symptom of coeliac disease and sent her to a specialist for confirmation. Other symptoms are abdominal pain, anxiety, bloating, brain fog, depression, diarrhoea or constipation, fatigue, although not everyone will have all of these, and some people might only have one or two.

The genes that make a person susceptible to coeliac disease also make them susceptible to many other immune conditions, such as autoimmune thyroid disease and type 1 diabetes. There’s also the chance of long term health conditions such as osteoporosis, liver disease and infertility.

I eventually became a regional Area Contact and organised monthly get-togethers to help other newly diagnosed coeliacs discover the world of “gluten free”. It was interesting to hear the stories that had led to their diagnoses. One woman had a friend who was diagnosed and realised she had the same symptoms but her doctor told her she couldn’t possibly have it because she was too healthy and not skinny and sick. She persisted, and he finally did the blood test and endoscopy and apologised to her when there was a positive result.

A man in his thirties who’d been too sick to work for some months got tested because his sister had been diagnosed coeliac, but his tests were negative. He did, however, go gluten free and within a couple of months was well and able to go back to work. I queried the Coeliac Society about this and was told that he was probably ‘gluten sensitive’.

Another woman had three children who’d been diagnosed, and she was desperate to find more gluten free recipes that they would eat. She said she could tell if her son had swapped his gluten free lunch for another kid’s “normal” one at school because he would be a “little shit” when he came home.

Approximately 1 in 70 Australians have coeliac disease, but only 20% of these are diagnosed. Which means the vast majority of Australians who have coeliac disease don’t yet know it. Knowledge of, and research into, coeliac disease has come a long way since I was diagnosed.

My diagnosis also led to discovering two of my three children are also coeliacs. Two grandchildren are also dealing with having to be gluten free, but with the growing number of gf products available now, and the willingness of restaurants to adapt their menus, they have far more choices than the “stodge” that was my introduction to eating gluten free.