Brenda Denyer, 61, from Surrey, had been diagnosed with coeliac disease – but still suffered symptoms
Sitting in a taverna in Greece, Brenda Denyer saw nothing on the menu that she was allowed to eat.
The retired medical secretary had recently been diagnosed with coeliac disease, an autoimmune condition where the immune system reacts to gluten — a protein in foods containing wheat, barley or rye.
The immune system’s reaction damages the gut lining, causing bloating, nausea and diarrhoea.
A gluten-free diet is essential to prevent further health problems, such as osteoporosis. This means coeliacs must avoid standard bread, pasta and flour.
By the time of her holiday three years ago, Brenda, 61, from Knaphill, near Woking, in Surrey, had been gluten-free for three months.
‘I tried to explain to the waiter and he brought a piece of grilled fish — the only thing on the menu he thought suitable. I was so despairing, I ate lots of ice-cream for dessert.’
But after the meal, even though it had been gluten-free, Brenda had terrible stomach cramps and diarrhoea. ‘I didn’t doubt I had coeliac disease as two tests had confirmed it,’ she says. ‘But I did wonder if something else was going on.’
It was. Like an estimated 40 per cent of people diagnosed with coeliac disease, Brenda had also developed lactose intolerance.
Lactose is a type of sugar found in cow’s milk and dairy products, and intolerance to it is a common complication of coeliac disease. But experts say patients are not warned about it and suggest some who think they are lactose-intolerant could have undiagnosed coeliac disease.
Coeliac disease is thought to affect around one in 100 people in the UK, but an estimated 500,000 are unaware they have it, according to the charity Coeliac UK.
Brenda’s problems began nine years ago when she developed stomach cramps and diarrhoea.
‘The GP told me I had irritable bowel syndrome (IBS) and to eat a high-fibre diet,’ says Brenda, who is married with two grown-up children. She was also prescribed the anti-spasmodic medication colofac and peppermint oil to soothe the pain — neither of which worked.
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For six years, Brenda put up with her symptoms. ‘I didn’t go back to the GP, as I knew there was no cure for IBS. Eating out was a nightmare as I’d always end up in the toilets, but I carried on making high-fibre food choices, believing I was doing the right thing for my IBS.’
Three years ago, her symptoms worsened and she also began to feel constantly nauseous.
‘Even though I hadn’t changed my diet, I started to lose weight — around half a stone within three months — and I felt totally drained. I would be asleep within minutes of coming in from work. I knew something was wrong. I convinced myself I had bowel cancer.’
After three weeks of this, in March 2013, Brenda went to see another GP. Blood tests and a biopsy of her gut lining revealed coeliac disease.
The consultant said it was important to exclude gluten because, beyond the symptoms, prolonged damage to the gut lining can affect absorption of calcium, leading to osteoporosis.
Like 40 per cent of people diagnosed with coeliac disease, Brenda had also developed lactose intolerance. Coeliac disease is thought to affect around one in 100 people in the UK, but an estimated 500,000 are unaware they have it, according to the charity Coeliac UK
Professor David Sanders, a gastroenterologist and chair of Coeliac UK’s Health Advisory Council, also says that continued bowel inflammation can, in rare cases, lead to cancer.
Brenda began a gluten-free diet straight away. ‘I’d been led to believe I’d feel like a new woman and my symptoms would disappear but, while I felt better, I still had diarrhoea and nausea.’
Six months after going gluten-free, and 12 weeks after her experience in Greece, Brenda saw an NHS dietitian, who recommended keeping a food diary. ‘When the dietitian looked at it, she suggested I might also have lactose intolerance.
‘This made sense, because my symptoms were particularly bad after I had gluten-free cereal with milk or ate a rice pudding or yoghurt. She ordered a blood test — which confirmed this.’
Experts estimate 10 per cent of caucasians and 40 to 50 per cent of people from India and Asia are lactose intolerant because of an inherited genetic defect. There is also secondary lactose intolerance, which can be triggered by damage to the gut through coeliac disease, inflammatory bowel disease (such as Crohn’s) and, sometimes, food poisoning.
Lactose will normally be broken down by the enzyme lactase, found in the gut lining, but any of these conditions damage the gut so you don’t produce enough, meaning lactose is undigested, causing bloating, cramps and diarrhoea.
Despite it being a common complication of coeliac disease, patients are not always told about it, says Dr Kamran Rostami, a consultant gastroenterologist at Milton Keynes University Hospital.
What’s more, Professor Sanders says lactose intolerance could be a sign of undiagnosed coeliac disease. ‘If someone is diagnosed as lactose intolerant, it’s worth investigating to see if the underlying cause might be coeliac disease or some other form of gut damage.’
The good news is secondary lactose intolerance linked to coeliac disease or another issue is usually temporary. ‘The gut heals after a few months if the patient avoids eating gluten and lactose,’ says Dr Rostami.
Cow’s and sheep’s milk have the highest levels of lactose, with lower levels in butter, margarine and cheese.
‘The best way to tell if someone is lactose intolerant is to advise them to cut out milk and dairy products and see what happens over the next few months,’ says Dr Rostami.
‘If a patient with coeliac disease is still experiencing adverse symptoms on a gluten-free diet, I suggest avoiding lactose products to give the gut time to start producing lactase again. Many patients reintroduce dairy products later.’
Professor Sanders says they should wait until all symptoms disappear, adding that unlike coeliac disease, where not even a tiny amount of gluten can be tolerated, there are degrees of lactose intolerance — so if you don’t eat many dairy products or don’t drink up to a pint of milk a day, you might not have symptoms.
Brenda’s problems improved after switching to lactose-free milk and avoiding cheese, ice-cream and gluten. She now eats small amounts of dairy products with no problems, suggesting her gut is making lactase again. ‘I’ve got my life back,’ she says.
For more information visit: coeliac.org.uk