Oliver's awful indigestion was actually 'gut asthma'
00:10 GMT, 3 July 2012
00:10 GMT, 3 July 2012
There are few experiences more painful for a mother than to watch helplessly as her child suffers, and Alison Groves has had more experience than most.
Almost two years ago, she looked on in horror as her fit and sparky 11-year-old son Oliver suddenly crumpled in pain in the middle of a football match.
He forced himself to carry on for the good of his team, only to collapse again at the final whistle.
On the mend: Oliver Groves and his mother Alison. He was unable to swallow, suffering excruciating spasms and retching
It was the start of a harrowing journey involving bizarre symptoms, pain and weight loss — then, finally, the alarming diagnosis of ‘allergic oesophagus’, a condition few doctors have heard of, and which some specialists believe might be related to the rise of oesophageal cancer.
Hundreds of British teenagers have been diagnosed with the problem, in which the oesophagus, the tube which takes food to the stomach, becomes inflamed due to the immune system overreacting.
Doctors believe there are thousands more cases in which it has not been recognised.
The burning pain in Oliver’s chest was so bad that his GP sent him straight to A&E.
He was unable to swallow, suffering excruciating spasms and retching.
Yet his x-rays came back clear and doctors could not work out what was wrong.
Oliver’s condition was not considered life-threatening, so he was sent home.
But the problem did not go away. The symptoms came and went, sometimes lasting for hours.
Some attacks would even wake Oliver in the middle of the night.
His young body racked with pain, he was unable to eat for days on end and sometimes struggled to breathe.
‘Even if he could have stood the pain, the spasm was incredibly embarrassing for Oliver,’ says Alison, 44, a home help worker from Clacton, Essex.
‘It was like a dog retching, a strange, long and deep noise as if he was about to be sick.
'There was nothing I could do for him.’
Oliver was diagnosed with allergic oesophagus, or asthma of the oesophagus. The condition causes cells associated with the immune system to start growing midway between the mouth and stomach
The onset of the condition, in October 2010, led the family into a nightmare of fruitless visits to doctors and hospitals.
There were chest X-rays, barium meal x-rays — in which a radioactive dye is swallowed to highlight the gut in scans — and, more alarmingly, veiled accusations that Oliver was attention-seeking, or even being deprived of food by a mentally-ill mother.
‘He was curled up in pain and he was too sick to go to school, but the scans were all clear,’ says Alison, who is separated from Oliver’s father and lives with her partner Martin and her older son Matthew, 19.
‘I tried all sorts of remedies for stomach upsets, but nothing seemed to work. I knew he couldn’t be putting it on.
‘The symptoms were too strange and scary, and he could not have made those kinds of noises on purpose.’
Over the space of several months Oliver, who was already a slim boy, lost the best part of a stone.
‘We went to the GP and to the hospital dozens of times.
'I was pushing and pushing for answers and being constantly fobbed off.
‘At one stage they were convinced it was a hernia, so they started investigating that, but found nothing.
'My worst moment was when a locum hospital consultant accused me of making him ill by not feeding him.
‘I should have complained, but I didn’t want to make a fuss in case Oliver got even worse treatment.’
Fortunately, Alison’s parents and her two brothers, who are all senior hospital nurses, waded in to help.
They advised her to insist Oliver was seen by a top specialist in digestive problems.
Finally, he was referred to Dr Rob Heuschkel, an expert on digestive disorders in children at Addenbrooke’s Hospital, Cambridge.
A tissue sample was taken and Oliver was diagnosed with allergic oesophagus, or asthma of the oesophagus.
The condition causes cells associated with the immune system to start growing midway between the mouth and stomach.
This causes painful inflammation, as the cells attack a non-existent enemy (as happens with asthma).
The narrowing of the oesophagus can make swallowing impossible.
Allergic oesophagus is most common in teenage boys and appears to be on the rise.
This has coincided with a huge leap in a form of oesophageal cancer known as adenocarcinoma.
Cancer of the oesophagus affects twice as many people in Britain as elsewhere in Europe, and leads to about 7,000 deaths a year.
The number of cases has almost doubled in little more than a generation, and a key cause is regurgitation of acidic stomach contents into the oesophagus.
The usual treatment is a course of steroids and fluticasone asthma inhalers, which patients spray down their throats to swallow
This problem is also associated with allergic oesophagus.
‘There has been concern from some academics that allergic oesophagus might be an early trigger for the rising rate of adenocarcinoma, but we simply don’t know,’ says Dr Heuschkel.
‘Twenty years ago, no one had ever heard of allergic oesophagus, but now specialist centres across the UK are getting one or two cases a month, most of them teenage boys.
‘The assumption is it arrived in the environment recently — it could be related to diet or a fungus in the atmosphere.
'It may be Oliver inhaled something while he was playing football that day.
'We have no idea what triggers the oesophagus to react in this way, or why it seems particularly to affect boys.’
The condition was first identified in the U.S. in 1985, when a young researcher, Stephen Attwood, began investigating a cluster of young patients complaining they could not swallow properly.
Although some doctors at the time believed this was psychological, Dr Attwood, as he was then, took tissue samples that showed the rogue cells in the gullet.
But Dr Attwood, now professor of surgery at Durham University and a spokesman for the British Society of Gastroenterologists, is convinced allergic oesophagus has no connection with cancer.
‘I have spent the past 25 years on this, and I would have come across a link by now if one was there,’ he says.
But he admits he is baffled about the origins of the disease.
‘It could be food, chemicals in the water or something in the air, or it could be a spontaneous reaction of the immune system, as with other allergies,’ he says.
The usual treatment is a course of steroids and fluticasone asthma inhalers, which patients spray down their throats to swallow.
This helps relieve the inflammation, but it does not always work.
‘Although I would call this asthma of the oesphagus, that can be misleading because it doesn’t necessarily respond to the drugs you use for asthma,’ says Professor Attwood.
He helps to run the National Eosinophilic Oesophagitis Registry, set up two years ago to discover how many cases there really are.
There are 350 patients on the database, but Professor Attwood believes the real number of sufferers is ten times higher because most doctors have never heard of the condition.
Last month, details of the symptoms were presented at a meeting of the newly formed Digestive Disorders Federation in Liverpool in the hope of raising awareness.
Professor Attwood believes doctors must recognise the condition to avoid the risk of patients being wrongly treated for something else, undergoing unnecessary surgery or taking the wrong drugs.
Alison’s GP had never heard of allergic oesophagus when she told him about Oliver’s diagnosis.
But thankfully with treatment her son is feeling better again.
‘He has just been taken off the steroids at last, after taking them on and off for more than a year. He is now eating well and is completely fit and healthy,’ she says.
Doctors can’t tell if Oliver has got rid of the condition or if it will return, but Alison is optimistic.
‘Luckily, he is a bright boy and the school says he hasn’t suffered by missing so much time off.
'He is still going to take his maths GCSE a year early, and he’s doing better than ever, so I’m really pleased. We’ve got our fingers crossed.’
Families Affected By Eosinophilic Disorders is a support group for relatives of sufferers of this condition.