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My family's story

in Stories
26 May 2014
 

I was diagnosed with coeliac disease nearly 30 years ago, when I was 30 years old. At the time, there had not been any other coeliacs diagnosed in my family. My parents were both from large families, my mum was one of 10 children of Scottish parents and my dad, one of 11, had an Irish father and his mother was of German descent. Both my maternal grandparents died of cancer in their early 70s.

I am the youngest of four children. As a young child, I wouldn’t say that I was unwell, although I recall regularly having ‘tummy pains’, several visits to local GPs, and varying theories, usually constipation or grumbly appendix.

I had my first two children in 1976 and 1977. My third pregnancy ended in a late miscarriage of a healthy baby in 1979. At the time, there was no reason identified. I had two more children in 1979 and 1982, without any further difficulties.

As my husband was a teacher, we spent the years 1978-1988 moving around Queensland teaching in rural areas. In 1981, whilst holidaying in Cairns, I became unwell with severe stomach pain. A local doctor there suggested a barium meal x-ray. As a result of this, I was prescribed medication, usually used to treat stomach ulcers, to treat ‘irregularities’.

Towards the end of 1983, I was suffering from such acute tiredness that I was struggling to keep going during the day. In early 1984, I went to the local doctor, in the town we were living, after not being able to control either the tiredness or the feeling of weightlessness in my arms. I would actually feel as if my arms were floating up beside my body. Blood tests revealed anaemia and he sent me to Brisbane for a gastroscopy thinking I may have an ulcer. As a result of that visit, I was diagnosed with coeliac disease. I still recall the phone call from the gastroenterologist telling me that a biopsy had shown I had coeliac disease. He asked had I heard of it, and then said basically stop eating bread, cake and biscuits straight away and don’t drink whiskey or beer! He then advised I contact the Coeliac Society and visit my local doctor for more advice.

The next day I did both those things. I joined the Queensland Coeliac Society (now Coeliac Queensland). I started to research myself and slowly developed an understanding of what being a coeliac entailed. In the town I was in, there was no availability of gluten free products as such, but of course, there was plenty of fresh produce available. Within two weeks of diagnosis, I discovered what it was like to feel ‘normal’. I was amazed to discover that the whole population didn’t feel as I had felt all my life, which was ‘unwell without knowing it’.

We were told at the time of my diagnosis that there would be a strong chance that some of our children would also have coeliac disease, and to be aware of that. Shortly after my diagnosis, our eldest daughter often complained of stomach pain. The local doctor decided we should take her off dairy to see if the problem could be resolved!

In 1986, we transferred to another town in Western Queensland. We made a decision to take our four daughters to Brisbane to consult a gastroenterologist for advice on whether they should be tested for coeliac disease. The local GP could not have been more helpful and shortly after that process began our eldest daughter, Cassie, and our third daughter, Aimee, were both diagnosed with coeliac disease. They were 10 and 7 years old at the time. The other two, aged 9 and 4, were tested shortly after and both biopsies were negative.

We began our journey of eating gluten free in earnest at this point. I had not really bothered much with bread, etc., just for me and had been happy to do without some things, as obtaining ingredients was such a challenge. My wonderful mum used to post and rail gluten free flours and any treat she could find, and then I discovered a company in Victoria that would send me supplies. It was expensive, but I was determined that our girls would have ‘party food’ at parties and all the regular flour containing foods that we all take for granted every day.

We moved back to Brisbane in 1988 – Expo year. What a year it was for us. We would head in to Southbank after school with our stock of gluten free chicken pies that we would make on the weekend and have a wonderful time exploring and having picnics.

The whole family ate those pies as they were so good!

In the mid 1990s, one of my mother’s brothers was diagnosed with coeliac disease. I’m not sure of his age at the time, but I think he would have been about 80 years old. His granddaughter has since been diagnosed as well. I also had a cousin, on my mother’s side, diagnosed about the same time. I am unaware of other diagnoses in the ‘cousin’ area, but as I have such a large number of cousins, I could well be unaware of others diagnosed with coeliac disease.

In about 2001-2, my mum started to lose weight dramatically, with no obvious cause. She was 81 years old. She had a blood test that was negative for coeliac antibodies. However, the gastroenterologist decided on a biopsy, which was positive. Despite being a wonderful gluten free cook for us for many years, she didn’t enjoy the gluten free diet, but her health did improve dramatically. I recall that when I was a child, she used to stand at the fridge freezer scraping ice off the freezer walls and eating it - this would be a daily occurrence and I often wonder if this was a ‘coeliac symptom’ all those years ago. I also recall reading a similar story in a past issue of The Australian Coeliac magazine of unusual ‘ice eating’. She was also very anaemic and I remember her having regular iron injections in the 1960s. Sadly, she passed away in 2008 from an unrelated cause.

In early 2003, at the age of 26, after some months of being unwell, our second daughter, Kylie, was diagnosed with coeliac disease, following positive blood tests and a subsequent biopsy.

My sister, Muriel, was diagnosed with coeliac disease after an ‘acute health event’, which saw her in Toowoomba hospital in early 2005. She was 57 years old at the time. At this stage, none of her immediate family has been tested.

My eldest brother died in 1990, aged 46, after a prolonged illness involving cirrhosis of the liver. The cause of the cirrhosis was never identified. He had tested negative for coeliac disease at some stage after my diagnosis and during his illness. I’m not positive how that test was done. He had found that while living for a short time in Japan and not consuming any gluten, his health seemed to improve.

Our youngest daughter, Jess, had another biopsy at about 19 years of age. It was negative. She has since had a positive gene test. She is unwell whenever she eats gluten and now, at age 29, eats a gluten free diet. She is reluctant to be retested, as she has no desire to eat the gluten necessary for testing!

We now have eight beautiful grandchildren and the cycle continues. Two of these have now been diagnosed with coeliac disease. One was aged 4 and the other aged 5 at the time. I imagine that there will be future diagnoses as well, but we feel well equipped to cope with this eventuality.

The advances in gluten free food availability over the last 30 years have been staggering. It’s progressed from having to make everything in the home kitchen with limited ingredients, to a huge range a gluten free products both as ingredients and also ready-made. I still find the home-made products best, but at least now there is a choice.

In 2010, I was fortunate to be involved in the first phase of the vaccine trials in Brisbane. Even if these treatments being investigated now are of no benefit to me, I have a generation of little people coming on who will benefit from these new findings. I follow the research being done now with great interest. I think we owe so much to the people who are dedicated to trying to solve the mysteries of this and other conditions in an effort to improve outcomes for so many of us.

This is the story of my family. There will be many similar stories out there. I can’t imagine what my journey would have been like without the support of Coeliac Queensland. My membership over the last 30 or so years has been a wonderful investment in time and money, and I look forward to many more years of positive involvement with Coeliac Queensland.

by Glenys Love (Member of Coeliac Queensland)

(This article appeared in the September 2012 issue of The Australian Coeliac magazine)

 

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