Archive for the ‘Real Life Stories of Coeliac Disease’ Category

You may have seen the story of Natalie on the Channel 10 News on Sunday, 14 March.  Here is the full story…..

After years of worry, Natalie was finally diagnosed with coeliac disease which is a serious condition affecting at least one in 100 children in Australia.  Sadly, four out of five children with the disease are not diagnosed.

Unfortunately, Natalie was so ill by this stage that she had to be hospitalised and fed through a tube.

“It was such a relief to know what was wrong with Natalie and to be able to do something about it,” said her Mum, Lisa.  “She was so ill when she was diagnosed that I couldn’t see that she was ever going to recover.

“But the turnaround in her health once she started treatment was immediate.  All her symptoms just disappeared and she started to eat again and put on weight.  She had so much energy it was like having a totally different child, it was as though someone had flicked a switch and she became alive again.  Her little personality started shining through for the first time in nearly two years.  I just wish we’d known what was wrong with her so much sooner.”

Paediatric Gastroenterologist, Associate Professor Don Cameron, is an adviser to The Coeliac Research Fund and The Coeliac Society.  He says that there is an urgent need to raise public awareness about coeliac disease in children, because although it is very common, it is often not diagnosed and can result in severe health complications in later life if it is not treated properly.

Associate Professor Cameron said that coeliac disease is nearly is nearly twice as prevalent as Type 1 juvenile diabetes1 and 25 times more common than cystic fibrosis2, but most people in Australia had never heard of it and diagnosis rates were very low.

“Coeliac disease affects at least one in 100 children in this country but four out of five are not diagnosed,” he said.  In fact, it is one of the most under diagnosed conditions of our time.  We call it ‘the hidden epidemic’ because most coeliacs are not diagnosed until they are adults and some are never diagnosed at all.

“But we need to put coeliac disease squarely in the public limelight because this is a very serious condition.  Not only can it cause very debilitating symptoms in children and hinder their growth and development, but if it is left untreated, it can also cause early onset osteoporosis, liver disease, infertility and cancer in later life,” he said.

Associate Professor Cameron said that coeliac disease typically starts in childhood between the ages of four and seven years old, although symptoms can present at any age, even in adulthood.

He urged parents to ring The Coeliac Awareness Hotline 1300 273 272 for more information if their child has any symptoms that could be due to coeliac disease.  These symptoms include unexplained bloating, diarrhoea and/or constipation, tummy pains, tiredness or lack of stamina, anaemia, mouth ulcers, failure to thrive or difficulty in concentrating.  “Sometimes, children with coeliac disease don’t have any obvious symptoms at all and just seem to be generally ‘out of sorts.’  Younger children in particular might just be clingy, grumpy or short tempered because they are feeling unwell and can’t explain why.”

Associate Professor Cameron said that children could not just ‘grow out of’ coeliac disease.  “This is a permanent condition which needs proper medical diagnosis and ongoing treatment,” he said.  “The good news is that diagnosis is simple and with the proper treatment, most children will start to thrive again very quickly and their risk of longer term health complications is minimised.

“Most importantly, we encourage parents not to diagnose their children themselves and not to eliminate gluten from their diet without medical advice.  Gluten is like a poison to coeliacs and parents need to learn how to manage their children’s diet very carefully under qualified medical supervision,” he said.

Associate Professor Cameron said that coeliac disease is hereditary and he urged anyone who has a relative in their family with the condition to arrange a coeliac test for themselves and their children.

Teenager Laura was five when she started to get really bad stomach cramps at night for apparently no reason.

“It was heartbreaking,” said her mum Mim.  “It went on for nearly three years and we just didn’t know what was causing them.

“Ever since she was a baby, she’d had a bloated tummy.  Then all of a sudden, she started getting these terrible tummy aches as well.  The next thing was that she became very lethargic and listless.  It’s little wonder that she became so miserable and just didn’t want to do anything or run around any more.

“We were very worried at the time because we just didn’t know what was going on.

“Finally after all sorts of investigations, Laura was diagnosed with coeliac disease and it was such a relief to know what was wrong with her and to be able to do something about it,” said Mim.

“We were shocked, but it was good to know the reason why she had been so sick for so long.  At that time, we didn’t know anything about gluten at first but we soon learned!

“Putting Laura on the new diet was the best thing we ever did - her health has improved out of sight.  Her tummy upsets disappeared and she’s a really happy person with lots of energy, she’s like a different person.  She loves athletics and playing soccer and is always on the go.  She’s never looked back since she was diagnosed and neither have we.”

Today, sisters Madison (11) and Amy (15) are happy, healthy and energetic girls, but nine years ago, it was a very different story.

Baby Madison was seriously unwell and six year old Amy had no energy at all.

“Ever since Madison was born, she had been very quiet and withdrawn,” says her mum Theresa.

“I knew there was something wrong with her but I just couldn’t put my finger on it. 

“She used to sit for hours on end without moving in her stroller or sleep for 12 hours at a time.  All the other mums would say how good she was, but I always felt there was something seriously wrong.  As she grew older, she was very slow to crawl and stand up and she didn’t walk until she was 15 months old.

  “When we started her on solid foods, the real troubles began.  She developed a very bloated tummy and vomited violently every time she ate.  Her food was totally undigested.  Then she would be up all night crying in pain.

“At the same time, her sister Amy was very lethargic and slept a lot too.

“We didn’t know what to do but eventually Madison was diagnosed with coeliac disease.

“I cried when I first found out.  At that stage, I didn’t know what coeliac disease was and I was so afraid she was going to die.  It was such a relief to find out that it can be controlled by something as simple as diet.

“After that, we had Amy and myself tested too and both our results were positive as well.  I didn’t know at the time that coeliac disease runs in families, but it certainly runs in ours!”

“Sam had been a beautiful chubby, healthy baby and then he started to get really sick, says his mum Louise.

“Over a period of several months, he became really thin and had a lot of bad tummy upsets and we had no idea at all what the cause was.

“Clearly, there was something very wrong. He started to lose a lot of weight and his stomach was always distended. On top of that, he was very lethargic and just wasn’t interested in crawling around or walking at all. He just used to sit quietly not moving.

“I was at my wits’ end.

“We thought at one stage he had been poisoned, he was just so sick. I just didn’t know what to do to help him get well again.”

“Eventually, after looking at all sorts of things that could be wrong, Sam was finally diagnosed as having coeliac disease.

“Because they told us it was hereditary, we immediately had the rest of the family tested and my son Benjamin and my husband Michael turned out to be coeliacs as well.

“We were so grateful to know what was wrong and how to treat it.

“Sam improved almost overnight on a gluten free diet and today, he’s just a perfectly normal teenager who is busy and active and enjoys perfect health – he rarely even gets a cold.”

Sam says “The hardest bit about coeliac disease is having to repeat what it is so many times, because most people have never heard of it!

“I have no medication, which is great, just a medical review every two to three years.”

Eating an Anzac biscuit one time before he was diagnosed with coeliac disease was an awful experience for six year old Ethan because the gluten in the biscuit made him so very ill.

The incident was the last straw for his mother, Rosalie, who was already at her wits’ end worrying about her little boy and the fact that he seemed so out of sorts all the time.

“Ethan had been a normal baby, but from the age of about 18 months old, his health started to deteriorate,” says Rosalie. He was always very bloated and he had a really rounded pot belly. He had terrible problems with constipation and he started to get very bad tummy upsets.

“He was always very tired too and then he was diagnosed with anaemia. By this stage, his growth had slowed right down. He actually didn’t grow for about a year and he was well below the percentile for his age.

“By the time he was three, he was so out of sorts all the time and something was obviously very wrong.

“Luckily, a doctor had the foresight to include a coeliac test when he was having blood tests for the anaemia.  The tests for coeliac disease came back positive.  The diagnosis was later confirmed and he started following a strict gluten free diet straight away.

“It was such a relief to know what was wrong with him and to be able to do something about it,” says Rosalie.

“Since following a strict gluten free diet, he has masses more energy and stamina and his vitality has come back. He loves playing soccer, swimming and taking dance and drama classes.

“Best of all, he’s back to the mischievous boy he used to be! His tummy upsets have long disappeared and he’s been growing at a faster rate than other kids his own age. He’s never looked back since he was diagnosed and started his new diet.”

Mother of four Fiona Kersten battled with the symptoms of undiagnosed coeliac disease for many years and ‘felt cheated at having lost those years to illness.’

Fiona remembers: “Looking back, I realised that I’d never really felt well all my life.  I’d always felt tired and had tummy upsets and it got worse when I had the children.  I was sick for the whole nine months of all four pregnancies.

“Eventually though, I was skin and bone. I had anaemia, I vomited every day and had vitamin deficiency dementia.   I couldn’t talk properly because my brain was malnourished and I avoided going to the local shops for fear of engaging in conversation.  My thinking had become so slow that I didn’t get jokes told around the family meal table.  It got to the point I was sleeping every afternoon and couldn’t work.”

Fiona’s family thought she had anexoria, some friends thought she had chronic fatigue syndrome while others suspected a mood disorder.

After multiple visits to doctors, Fiona was finally referred to a gastroenterologist who diagnosed coeliac disease.  She was then placed on a gluten free diet.  Because of the hereditary nature of the condition, Fiona’s daughter was tested and found to be a coeliac.  Thanks to early detection, she has not suffered like her mother.

“Being diagnosed and treated was the best thing I ever did.  I feel 100 per cent better than I did before and have been able to take up walking, swimming and bicycling again.  I’ve even been able to return to work part time.”

Champion kyaker Glenn Singleton is living proof of the benefits of correct diagnosis and treatment for people with coeliac disease.

Glenn, who represented Australia in six world kayaking championships and 31 World Cups, has won seven National Australian Open titles, the K2 1000m Gold and the 2003 World Cup.  He also qualified for Australia for the Beijing Olympics in the K4 1000m.

“Despite being a pretty fit bloke, I was always tired and had an aggravated gut a lot of the time.  On top of that, I had anaemia and had been nutrient deficient for years,” says Glenn.

“I used to put it down to the fact that I was training pretty hard and pushing my body a lot.

“I’d tried a lot of things, but eventually, my GP said “We need to do something different here,” and sent me to a gastroenterologist for tests.  That’s when I found out I had coeliac disease.
 
“As a 26 year old guy who loves his food, I was really worried about how I’d cope, especially as an athlete who ate mountains of bread, pasta and cereals before training!

“But I was relieved to find out what was wrong and since following the gluten free diet, the difference in my general wellbeing has been huge.  I’ve put on 10 kilos and went from training once a day to four times a day with no ill effects whatsoever. 

“But the best thing was that I improved my time by a whole 15 seconds, which was a massive increase.

“And these days, I’ve gone from someone who didn’t know much about cooking to being a pretty dab hand in the kitchen even if I say so myself!  I’m always developing new gluten free recipes to keep my diet interesting and tasty. “

 Chris is a professional fire fighter who loves playing with his small son and building and flying gliders with this wife in his spare time.

But life wasn’t always so good.  When he was 44, Chris became seriously ill and no one knew why.  He was chronically tired and lost a massive 10 kilograms in weight in a matter of weeks.

“It was so serious I was getting ready to sell the house and the plane because I thought I was going to die,” he said.

“Looking back, the problems really started back when I was a baby.  I used to get terrible tummy upsets even back then but the specialists said there was nothing wrong.  Then as I grew up, it just became worse.  Wind was a problem too, I was known for being able to clear a fire station in seconds!

“But all of a sudden, my health took a real nose dive.  The tiredness became so severe I couldn’t work, the tummy upsets were continual and my concentration was shot to pieces, I couldn’t remember even the simplest things.  Then I developed huge lymph nodes.  The specialist said he’d never seen lymph nodes that big in his life before and I thought I probably had lymphoma.”

“At that stage, I thought I was a dead man walking.” 

After a lot of tests, Chris was diagnosed with coeliac disease.

“It was such a relief to know I was going to be ok,” he says.  “Within five days of eating gluten free I felt better.  The tiredness disappeared, the tummy upsets stopped, I put on 13 kilos and best of all, my lymph nodes settled right down.

“I just wish I’d known what to do so much sooner.”

“Some days I was so tired I could hardly get out of bed in the mornings,” says Meg.  “But I’m a pretty positive person and you just push through it as much as you can.

“But then I started to feel really sick whenever I ate anything.  It was like car sickness and sometimes the nausea was so bad I just wanted to lie down and die.  Then I started losing weight too - I went down from 52 kilos to just 45 kilos.  I’m 156 centimetres tall so I looked all skin and bones.

 “I thought I had a stomach virus and I just kept going.  Then you start to put it down to all sorts of things like not eating properly and trying to pack a lot into a day.  But things just didn’t get any better, no matter what I did.

“In the end, I realised that there had to be something seriously wrong but I still had no idea what it was.  It took me six months of medical tests to find out.”

“Looking back, I started to put all the pieces together and it made sense.  I remember one time when I had a big bowl of spaghetti the night before a tennis match and the next day, instead of being full of energy, I could hardly move.  It also explained why I always felt worse at the weekends because that was when I would have cereal for breakfast. 

“The day I stopped eating gluten, I felt 100 per cent better.  The tiredness and lethargy just disappeared as did the stomach pains and nausea.  I started to put on weight and look human again.

“But I felt unwell for a long time before I was diagnosed.”

Helen’s a busy historian  and spends a lot of time in archives, she work as a freelance historian, has written a book and even runs cemetery tours!

Nowadays she has a busy job as Mayor – chairing all official council meetings, meetings with community groups, other local government & state and govt reps, lobbying for Council, promoting environmental and heritage.

However, she didn’t always have such energy.  Helen was diagnosed with a wheat allergy 20 years ago and omitted wheat from her diet but kept eating rye!  It wasn’t until Christmas Eve  2005 that her diagnosis of coeliac disease was finally confirmed.

Prior to that Helen was losing weight, had a bloated tummy, bowel upsets, felt tired and had chronic constipation all her life.  Her GP ordered a colonoscopy and Helen asked for a blood test.

After starting the gluten free diet she felt wonderful and found the change to the new regime easy as she was used to omitting wheat.  The tiredness and tummy symptoms are now gone.  In fact the distended tummy went in a matter of only a few days and Helen now has so much more energy.

Helen finds the Coeliac Society a tremendous help with the practical advice and restaurant listings to her her manage her coeliac disease.