Nuisance child No, my son's allergic to bread: Why experts think many 'unruly' youngsters may simply need a change of diet
21:48 GMT, 9 April 2012
21:48 GMT, 9 April 2012
Taylor, pictured with his mother, is a different boy since his diagnosis
When she arrived at school to find her tearful six-year-old son standing next to an exhausted teacher, Crette Berry’s heart sank.
It was last June and the second time she had been called to collect Taylor in as little as a fortnight.
Once again, his uncontrollable behaviour had pushed his teachers to their limit.
Barely a day passed without Taylor
kicking, biting and hitting other children, shouting at teachers and
hiding under tables in lessons.
Taylor had been causing problems since starting school two years earlier.
he was facing suspension.
At home, things were not much better, with
Taylor fighting with his siblings and being rude and defiant to his
‘I’d never imagined my child would even get near being suspended. I felt deeply ashamed,’ says Crette.
‘At home, we’d tried methods such as time out and taking away toys in an attempt to encourage him to behave. Nothing worked.
'We were desperate for anything that would make the difference, even if that was suspension.’
But Taylor’s unruliness was not down to a lack of discipline.
In fact, he had coeliac disease — an allergy to gluten, a protein
formed in wheat, barley and rye — and the boy’s behaviour was simply a
result of total exhaustion.
With depression and irritability a known symptom, experts are warning that many children and, indeed, adults may have been mistakenly diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) when, in fact, they are suffering from the allergy.
Crette got to the truth about what was wrong with her son only because of her own intuition.
'I'd often look at him and think: “He is not well.” He was exhausted all the time, with dark circles under his eyes,' said Crette Berry on her son Taylor
‘I was constantly frustrated and angry with Taylor,’ says Crette, who lives in Marschapel, Lincolnshire, with her partner Gary, 37, a joiner, and their other children Elliyah, nine, and Amayah, two.
‘But at the same time, I’d often look at him and think: “He is not well.” He was exhausted all the time, with dark circles under his eyes.
'Every night after school he would slump on the sofa with no energy to do anything.
‘There was one heartbreaking occasion last summer when he asked me for help to stop him being naughty.
'He said to me “It’s my brain making me do it”, as though he was powerless to control himself. I began to think perhaps he had ADHD.’
For months, Crette’s concerns fell on deaf ears, both with the GP and specialists who dismissed any possibility of an illness.
Even Taylor’s father believed strict discipline would eventually change his behaviour.
Desperate, Crette began to research what could be behind her son’s symptoms.
‘I looked online and drew up a list of different conditions that could be causing Taylor’s behaviour, cross-referencing the causes and symptoms with what I could see in him,’ she says.
‘Coeliac disease stood out because it is associated with anaemia, and Taylor was pale and exhausted.’
Coeliac disease is an auto-immune disease caused by an intolerance to gluten, which is in a wide range of foods from bread to pasta, and is often used in foods such as fish fingers and sausages.
Having immediately changed Taylor's diet to exclude gluten, Crette noticed an improvement in her son's behaviour within a week
When sufferers eat gluten, it triggers an auto-immune reaction that damages the villi, the finger-like protrusions that line the small intestine.
The damaged and inflamed villi are unable to absorb food properly, causing stomach cramps and malnutrition as well as anaemia, tiredness, vomiting and depression.
In January, Crette’s theories were proved right. After her GP referred Taylor for a gut biopsy, the diagnosis of coeliac disease was confirmed.
‘Coeliac disease affects around one in 100 people,’ says Norma McGough at Coeliac UK.
‘But only about 10 to 15 per cent of people with the condition are clinically diagnosed. It is important health-care professionals consider all the different manifestations of coeliac disease and not just the most obvious ones of stomach problems.
'Then at least it can be ruled out as the cause of problematic behaviour conditions such as ADHD.’
Several studies have found an association between ADHD and coeliac disease.
In a German study of 67 people with ADHD, 15 per cent tested positive for coeliac disease — significantly higher than in the general population.
Researchers at the Psychiatric Hospital of Rodewisch found that once these subjects started a gluten-free diet, there was a significant improvement in their behaviour.
Another study, at the Hospital of Bolzano in Italy, looked at the incidence of ADHD in people newly diagnosed with coeliac disease.
It assessed 132 patients and reported that ADHD symptoms are markedly over-represented among untreated coeliac disease patients.
Coeliac disease is an allergy to gluten, a protein formed in wheat, barley and rye
Again, they improved quickly after changing their diet.
‘There have been studies where behavioural change for the better has been observed in children post-diagnosis with coeliac disease,’ says Norma McGough.
‘However, it’s important to say we don’t yet have conclusive evidence of a firm link between coeliac disease and ADHD.’
Dr Nick Read, a gastroenterologist and psychotherapist, agrees.
‘In the studies, the response to a gluten-free diet is probably too quick to be caused by an improvement in general nutrition, and therefore it may be that having (coeliac) disease, which in itself causes malaise, slight fever and discomfort, induces distraction and lack of focus.’
Peter Whorwell, professor of medicine and gastroenterology based at Wythenshaw Hospital, says: ‘Emerging evidence shows that coeliac and ADHD are associated.
'I wouldn’t want to raise hope, but if someone came to me with a child showing ADHD symptoms and asked me to test for coeliac, I’d consider it most definitely worth doing.’
There is no cure for coeliac disease. The only treatment is lifelong adherence to a strict, gluten-free diet.
Otherwise, the disease can lead to malnutrition, osteo-porosis, bowel cancer and infertility.
Having immediately changed Taylor’s diet to exclude gluten, Crette noticed an improvement in her son’s behaviour within a week.
‘He’s getting rewards at school instead of being excluded from class for bad behaviour. The teachers say he is transformed,’ she says.
Taylor’s problems began in September 2009, when he started school.
‘I’ve since learned coeliac disease can lie dormant and be triggered by stress, so it’s possible the upheaval of starting school started it,’ Crette says.
She also noticed her son’s growth slowed.
‘He didn’t lose weight, but he didn’t put it on as expected,’ says Crette.
‘I was worried, but the GP didn’t seem to think this was a concern.’
By March 2011, Taylor was put on the Special Education Needs register. But at home, Crette was continuing in her research online.
‘The more I looked into his symptoms of tiredness, irritability and inability to concentrate, and illnesses that could cause anaemia, the more coeliac disease seemed to be a probable diagnosis.
‘I arranged to see another paediatrician and this time I demanded coeliac disease screening.
'Three weeks later, it was confirmed that Taylor was anaemic and likely to have coeliac disease.’
One of the problems in diagnosing coeliac disease is the different manifestations it takes, says Norma McGough.
‘On average, our members spend 13 years from having problems to getting a diagnosis,’ she says.
‘There needs to be a better awareness of the symptoms of coeliac disease, including behavioural problems.’
Taylor follows a strict diet — with gluten-free cereal or bread for breakfast and gluten-free pasta for dinner.
‘I feel so guilty we couldn’t have helped him sooner,’ says Crette. ‘But at least we have a diagnosis.
‘If I hadn’t persisted with my research, he most likely would have been diagnosed with ADHD.
'Had that happened, his problematic behaviour, and that label, would have stuck with him for the rest of his life.’
For more information, log onto coeliac.org.uk or call 0845 305 2060.