And how to tell if you really are one of UK’s 500,000 coeliac sufferers
FOR Lynne Mansell, the weekly food shop is a time- consuming affair. Labels must be read and the ingredients of everything, even stock cubes, must be checked.
That’s because two years ago Lynne, 56, a sheltered housing officer, was diagnosed with coeliac disease — a condition where the small intestine reacts to gluten, the protein found in grains such as wheat, barley and rye.
If someone with the condition consumes anything with gluten in it — bread, biscuits or even ketchup — the immune system responds as if under attack and produces antibodies in response, damaging the surface of the small intestine.
This typically causes symptoms such as stomach pain, diarrhoea, excessive wind, nausea, cramping, bloating, headaches and weight loss. It also leads to difficulties digesting food which can result in anaemia and tiredness.
Yet Lynne still describes the diagnosis she got four years ago as ‘a shock’ — because she had none of these.
‘I’d always enjoyed a varied diet, eating pasta, pizza, bread and lots of foods containing wheat, and I’d had no digestion issues at all.
‘The only feeling I had every so often was a fluttering in my tummy for about eight years — as if my heart was skipping or a butterfly was flapping its wings,’ adds Lynne, who lives with her husband Paul, 58, in stonehouse, Gloucestershire.
Many assume those with coeliac disease must have symptoms relating to their gut, but, as Lynne’s story shows, that’s not always so. some will have only other symptoms such as fatigue, joint pain, malaise or feeling ‘fuzzyheaded’ — others, such as Lynne, may have ‘silent’ coeliac disease, meaning they have no real symptoms at all.
‘coeliac disease is a spectrum disorder, in that people have varied symptoms both in type and severity,’ says Professor David sanders from the university of sheffield, who is an expert in coeliac disease. ‘ The trouble with this is people don’t put their symptoms down to coeliac disease, so don’t get tested.’
The treatment is to eradicate gluten from the diet.
If left undiagnosed — or if people continue to eat it — gluten damages the lining of the gut, causing problems absorbing nutrients, leading to potential issues such as weakened bones, fertility problems or, more rarely, increased risk of certain cancer such as lymphoma cancers of the gut.
In some cases, neurological problems such as loss of balance, slurred speech, numbness and headaches may develop, as well as memory and concentration difficulties. It’s not fully understood why, but the symptoms may be related to how a particular immune system reacts to gluten.
‘The longer it is undiagnosed the more damage is possible,’ says Professor sanders.
Yet it’s feared hundreds of thousands of people may have silent or undiagnosed coeliac disease. A 2001 study led by Professor sanders screened 1,200 apparently healthy adults. One per cent — 12 people — tested positive.
‘We estimate there are around 450,000 people in the uK with coeliac disease who don’t know they have it — that means 75 per cent of people with coeliac disease are as yet undiagnosed,’ he says.
‘GPs need a low threshold for testing. If a patient presents with signs of coeliac disease, or even less obvious signs such as tiredness, anaemia or “brain fog”, or has a relative with it, they should test for the disease.’ Lynne only discovered she had it after her granddaughter Daisy, eight, was told she had coeliac disease four years ago. unlike Lynne, Daisy, then three, had obvious symptoms. ‘she always had a hard, distended tummy, stomach pain and would sleep for hours. Daisy’s parents, Lynn and craig, went to the GP many times before a blood test found signs of antibodies to gluten, which was followed by an endoscopy — where a small camera is passed into the gut — and a biopsy taken to check for damage to the gut lining.
Daisy’s parents changed her diet to a gluten-free one.
During a visit, Lynne asked Daisy how she was doing. ‘she told me her tummy butterflies had gone and she felt much better,’ Lynne says. ‘It struck me. “Butterflies.” I wondered: did I have the same thing?’
Lynne’s sister, a nurse, confirmed that coeliac disease can run in families and when she told her GP they agreed to run blood tests and send her for biopsies of her gut.
This found that she not only had coeliac disease, but years of eating gluten had led to damage to her villi — the tiny finger-like protrusions from the gut wall that help with the absorption of food.
Because of the family link — a relative with coeliac disease means you have a 10 per cent risk of having it too — Lynne pushed her son craig — Daisy’s father — to be tested, too.
He was found to have ‘latent’ coeliac disease, meaning antibodies to gluten that can signify coeliac disease were found in a blood test, but biopsies showed no intestinal damage.
craig went gluten-free to eliminate the risk of future problems. Lynne saw an NHs dietitian to help sort out her diet. ‘shopping was a nightmare,’ she says, ‘then I realised: it could rule me or I could rule it.’
PROFessOR
sanders says it is vital ‘silent coeliacs’ are vigilant about their diet. ‘ It might be harder for them to maintain the motivation to stick to a gluten-free diet — because they won’t gain the reduction in symptoms that others do.
‘But it is important for them to stick to it to avoid more damage to their gut.’
Lynne now has designated gluten-free kitchen cupboards and fridge shelves. ‘Paul’s very supportive, so if I cook a roast, it will be gluten-free Yorkshire puddings and gravy and he will eat it, too.’
Lynne felt better immediately on her gluten-free diet and is ‘butterfly-free’. Now she hopes to raise awareness that coeliac disease can be ‘silent’.
‘It’s only thanks to Daisy that I was diagnosed. How many more people are there like me out there?’