The former runner Yvonne Murray has all the determination you’d expect of
someone who has won a gold in the Olympics, but even her resolve and
determination faltered as she struggled to save her daughter’s life in the
face of medical bureaucracy.
“I was so proud of every medal I won,” she says, recalling the six-year period
from 1988 when she amassed gold, silver and bronze medals in the European,
Commonwealth and Olympic games. “But nothing matched the elation that my
husband Tom and I felt when our daughter Laura was born in 2001.”
Now 6, Laura is the picture of health, and it’s hard to imagine her being
desperately ill, with no one able to diagnose the problem. It took nearly
two years for her to receive the diagnosis that was to transform her life
and prospects.
“Things started to go wrong gradually,” says Murray. “Starting nursery at 18
months seemed to make Laura contract endless infections, which happens to
many toddlers. However, Laura was having real difficulty shaking these off
and, at the age of 2, she was almost permanently on antibiotics. Her growth
slowed and her weight dropped, and we were at the doctor’s surgery on a
monthly basis.”
She was constantly sick with diarrhoea and stomach pain, crying in pain, and
lethargic and miserable. Murray had read up on coeliac disease, an
inflammatory bowel condition caused by eating some foods, and was convinced
that Laura was showing symptoms of it.
So when, in December 2003, she was admitted to hospital for tests, Murray
suggested the possibility of coeliac to the consultant. However, her
response was that Laura wasn’t presenting with any of the classic symptoms.
And still the condition remained undiagnosed.
Most people digest gluten – a protein found in grains such as wheat, barley
and rye – without a problem. But when people with coeliac disease eat it,
the villi, the tiny filaments lining the small intestine, which play a
significant role in digestion, become damaged and inflamed. That means they
can’t absorb food properly, commonly causing diarrhoea, bloating, mouth
ulcers and malnutrition. The problem for sufferers is that just a tiny
amount of gluten can cause problems, and the protein finds its way into
hundreds of types of processed foods that don’t obviously contain grain:
sausages, soups and sauces, for example.
Anyone, at any age, can develop coeliac disease. But if a child has it, and it
is left untreated, he or she can suffer from weight loss and stunted growth.
It is only now that Murray is aware that lack of information about the
condition – and how its symptoms can vary from person to person (see box) –
can lead to slow diagnosis, which can be very dangerous.
It wasn’t until February 2004, when Laura was nearly 3, that the hospital had
finished its process of elimination and did a blood test for coeliac
disease. They had to wait three weeks for the result: it was positive. But
that was not the end of the family’s terrible journey. There was a further
12 week gap before the diagnosis could be confirmed with an endoscopic bowel
examination, and for treatment to commence.
“That was us at rock bottom,” says Murray, who thought that Laura might die.
“We weren’t allowed to change her diet until the diagnosis had been
confirmed. We had to keep feeding her the food that was poisoning her and I
remember cooking her pasta and crying because I knew it would make her
worse. No one should have to go through that.”
Finally treatment began and, within a fortnight, Laura was transformed into a
different child. “She was doing laps of the living room,” says Murray.
After the diagnosis, Murray became involved with the support group Coeliac UK
and talked to a mother who had had a similar experiences. “She had gone back
and forward with her young son to the health visitor and her GP because he
was so seriously ill,” Murray says. Eventually he was taken to hospital, so
emaciated that if they hadn’t got help when they did, the family were told
by their consultant that their son would have died within a fortnight. “We
need to educate people about this condition so everyone is alert to the
possibility of their child suffering from it,” she says.
Murray is careful about how she puts her feelings into words. She did feel a
dull relief at being proved right all along, but she was so exhausted when
the diagnosis was confirmed that all she really felt was relief that Laura
was recovering. The determination that served her so well in her running
career wasn’t enough when faced with medical experts.
“When you’re in a situation where other people have control, especially in the
care of your child, it isn’t easy to persist,” she says. “I am a great
believer in parental instincts, but at the same time you’re dealing with
specialists with knowledge and experience. You want to work with them but my
suggestion of coeliac disease was dismissed out of hand.”
At 2, Laura weighed only 20lb, the same as when she was 9 months old. Four
years later, Murray still finds it difficult to fight back tears as she
talks about it. “Coeliac disease isn’t some faddy eating style; it’s a
serious condition that can trigger dreadful problems,” she says.“It can be a
challenge making sure that children follow a gluten-free diet but as more
and more people become aware of it we can stop families going through the
agony we did.”
What is coeliac disease?
Coeliac disease is not an allergy but an auto-immune disease, which means the
body produces antibodies that attack its own tissues. It is gluten that
triggers the antibody attack.
A home test called the Biocard Celiac Test will soon be available over the
counter at pharmacies. It is available online at www.coeliactest.co.uk.
The most common age of diagnosis is between 40 and 50. More women than men
have the disease diagnosed.
Gluten occurs in breads, pasta, cakes, pastries and some cereals and beer.
There’s evidence that 1 person in 100 in the UK has coeliac. It takes 13
years, on average, from the onset of symptoms for the disease to be
diagnosed.
Coeliac UK helpline: 0870 444 8804; and visit www.coeliac.co.uk
Could you have it?
CLASSIC SYMPTOMS
These are the “typical” symptoms, but the charity Coeliac UK says they are
not necessarily the only, or most common, ones: Diarrhoea; steatorrhoea
(pale, greasy stools that float); abdominal pain or cramps; excessive wind
or bloating; weight loss; anaemia
ATYPICAL SYMPTOMS
Other symptoms can include: Constipation; vomiting; hair loss; mouth
ulcers; recurrent miscarriage; loss of feeling in the limbs; migraine; joint
pain; late menstruation
