Picture the scenario: you have endured weeks, months or even years of anxiety, embarrassment and crippling stomach symptoms.
Every meal time sparks fear of relentless pain, sometimes extreme bloating and maybe a mad dash to the loo. At other times, even going at all can be a struggle.
Doctors seem unable to find the reason – a few tests might have ruled out ‘anything serious’ such as cancer and other diseases.
The advice? Stop drinking coffee, keep a food diary to identify ‘triggers’, and try not to worry too much.
Studies estimate that at least one in five people in the UK suffers from the irritable bowel syndrome. Many have endured countless medical checks which failed to give them answers
Google searches prove baffling too: cut carbs, fat or sugar, or invest in a subscription for dubious-looking supplements.
All of this will, undoubtedly, sound familiar to millions of Britons who have been slapped with a diagnosis of irritable bowel syndrome – more commonly known as IBS.
Studies estimate that at least one in five people in the UK suffers from the condition. And many will have tales of endless medical checks which fail to give answers.
First step? Cut down on coffee and alcohol
Although causes for IBS symptoms can be found, for some people, tests will offer no explanation for their discomfort. Nick Trott, a gastroenterology dietician, urges patients not to lose hope. He says: ‘For a lot of people with IBS, simple lifestyle changes can make a massive difference.’
First of all, says Dr Simon Smale, consider limiting some products that irritate a sensitive gut such as caffeine, alcohol, fizzy drinks and chewing gum.
Experts recommend special diets such as ‘The FODMAP diet’ – a regime low in fermentable carbs – or a gluten-free diet.
Gastroenterologist Prof Sanders explains: ‘Both of these diets should be carried out alongside a dietician to ensure you don’t end up with nutrient deficiencies.
‘FODMAP diets eliminate a range of common trigger foods, such as onions, garlic and stoned fruit, then reintroduce them to find the culprit.
‘Others will find relief from gluten-free diets because gluten-containing foods have similar compounds to those eliminated on the FODMAP diet.’
According to Prof Sanders, this relieves symptoms for approximately half of patients.
‘But it’s a tough diet as it involves a lot of eliminations,’ he warns. ‘Other lifestyle changes such as low-intensity exercises like yoga, and managing stress with talking therapies, can be helpful too.’
For years, because a physical cause is often elusive, patients were made to feel their problem was ‘all in the mind’. But today, GPs have a range of tests at their disposal that can help flag up what might be the matter.
Indeed, last month, in a review of more than 220 scientific papers, researchers at the British College of Nutrition and Health suggested that IBS was the result of not one, but more than a dozen different diseases and conditions.
The ‘catch-all’ term IBS was being used to describe illnesses that, when correctly diagnosed, require distinct treatment. They also identified a host of lifestyle factors that, if tackled, could bring about huge relief.
Lead author, nutritionist Ben Brown, even went as far as to say the term IBS should be banned to ‘prevent years of unnecessary suffering’. He added: ‘Both doctors and the patient should be digging deeper, and trying to understand why they have these symptoms.’
Professor David Sanders, a consultant gastroenterologist at the Royal Hallamshire Hospital in Sheffield, said: ‘On the outside, it seems like a single condition, but there are many different diseases that could be the cause that aren’t totally obvious at first glance.
‘Patients can also have more than one condition at the same time. That’s why it’s often hard to work out what is going on. But when we do, and are able to give effective treatment, it can transform a patient’s life.’
Here, with the help of experts who have spent decades researching and treating gut problems, we outline a few of the conditions that are commonly put down to IBS. And we offer the often simple advice about what can be done.
If you also feel tired It could be coeliac disease
Coeliac – pronounced cee-lee-ak – disease happens when the body’s immune system, which usually protects against infection, mistakenly attacks healthy gut tissue.
It does this in reaction to gluten, a protein in wheat, barley and rye – although the reason why is not known. ‘This can cause a range of gut symptoms from gas and bloating to severe diarrhoea and vomiting, which can last for several days,’ says Dr Simon Smale, a consultant gastroenterologist at Manchester Royal Infirmary.
One in four people with coeliac disease has previously been diagnosed with IBS. And while the condition is estimated to affect at least one in 100 people in the UK, only 30 per cent are currently diagnosed.
Since 2010, patients visiting their doctor with tell-tale IBS symptoms have been given a blood test for coeliac disease. However, Prof Sanders says those who were diagnosed with IBS prior to 2010 may not have been tested.
‘It’s one of the first things we try to rule out these days,’ he says. ‘But this wasn’t always the case.
‘If you’ve got IBS symptoms but haven’t been tested for coeliac disease, it’s worth going back to your GP and discussing it.’
London actress and writer Daniella Isaacs, 28, endured crippling stomach pain and felt sick after eating for most of her teenage years due to coeliac disease
Prof Sanders warns patients who think they may have the problem NOT to go gluten-free before seeing a doctor. ‘If you stop eating gluten, it renders the blood test we use for coeliac disease ineffective – you need to be actively reacting to gluten for the test to come back positive. You might still have coeliac disease, but because you’re not reacting to it, the test gives a false negative.’
If the blood test is positive then a biopsy – a small tissue sample – is taken from the gut. This is carried out via an endoscopy, which involves a tube being inserted into the stomach and upper part of the gut via the mouth.
‘If this is positive, patients will need to go on to a gluten-free diet,’ says Prof Sanders. ‘It’s not easy, as gluten is found in all sorts of non-obvious places – wheat flour is used as thickeners in sauces, for instance. But sticking to this diet helps resolve symptoms. The damage caused by the disease also raises the risk of some types of bowel cancer and vitamin deficiencies, and cutting out gluten reduces this risk. Patients do find if they accidentally eat gluten, symptoms can be severe. So they have to be vigilant.’
If symptoms start after a milky drink it could be you are lactose intolerant
About five per cent of Britons are lactose intolerant. It means the body doesn’t produce enough of an enzyme called lactase, which digests lactose, the sugar in dairy. Symptoms usually come on a few hours after consuming milk, yogurt or cheese as the undigested lactose causes the intestines to go into overdrive, producing fluid to try to dilute it. The sugars also begin to ferment, producing gas. The result? Classic IBS symptoms.
About five per cent of Britons are lactose intolerant. It means the body doesn’t produce enough of an enzyme called lactase, which digests lactose, the sugar in dairy
Intolerance usually first emerges in older children and young adults as the amount of lactase you produce decreases as you get older. The amount of dairy that must be consumed to trigger symptoms varies, so the condition isn’t always obvious. A smaller number of people get symptoms because they are believed to be intolerant to gluten – not to be confused with coeliac disease, as described above.
Lactose intolerance is diagnosed with a breath test that looks for gases produced by fermenting lactose. This is performed by a specialist after referral from a GP. If the result is positive, patients are advised to cut out dairy. ‘Even people who are intolerant can actually tolerate some lactose in their diet,’ says Prof Sanders. ‘Those who can’t stomach a glass of milk find they can manage a dash in tea, or some cheese, for instance.’
Gluten intolerance is more complex, as there are no reliable tests for it. ‘Once coeliac disease is ruled out, we might supervise a gluten-free diet in patients who feel they are intolerant. This can help in about half of cases,’ adds Prof Sanders.
If there’s blood in the loo it could be Crohn’s disease or colitis
Crohn’s disease and ulcerative colitis are the two most common types of inflammatory bowel disease – a term used to describe conditions that cause the digestive system to become inflamed. Both diseases are the result of the immune system going haywire and attacking healthy gut tissue, causing permanent damage. Experts are still unsure why this happens.
Crohn’s disease can affect people of all ages, but symptoms usually begin in childhood or early adulthood. Symptoms include pain and swelling in the tummy, diarrhoea and extreme tiredness. You may also notice blood in your stools.
Under national guidance, doctors should be on the look-out for inflammatory bowel disease when a patient has symptoms of IBS.
Diagnosis includes blood and stool tests that can be done by GPs, and investigations involving a camera in a fine tube that is inserted into the upper digestive system via the mouth, or into the lower part of the system, via the back passage.
Tissue samples may also be taken from the gut lining.
‘Both Crohn’s and ulcerative colitis are incurable but drug treatments are highly effective,’ says Prof Sanders.
‘Despite this, patients can have flare-ups where symptoms are worse, followed by periods when things are not so bad.’
For those who get worse symptoms, surgery might be recommended – about half of Crohn’s patients need an operation to remove parts of the gut that have become damaged beyond repair. ‘There is hope, and treatments are moving on all the time,’ says Prof Sanders.
If you can’t stop rushing to the loo it could be bile acid malabsorption
As many as a third of people diagnosed with IBS could actually have a condition called bile acid malabsorption.
Bile is a substance that breaks down food and removes waste products after eating. Once it has done its job, bile is reabsorbed into the liver.
But if the bowel is inflamed, damaged or too much bile acid is produced, digestive problems can occur.
Dr Smale says: ‘People with bile acid malabsorption tend to have watery diarrhoea.’
Causes include bacterial or viral stomach illnesses and removal of the gall bladder, the small pouch-like organ in the digestive system that stores bile.
About six per cent of patients diagnosed with diarrhoea-dominant IBS are estimated to have a different condition – pancreatic exocrine insufficiency. This occurs when the pancreas does not produce enough enzymes.
‘This deficiency can mean you don’t digest food properly, which can lead to IBS symptoms,’ says Prof Sanders.
If bile acid malabsorption is suspected, a gastroenterologist will carry out an investigation called a SeHCAT study.
This involves swallowing a capsule containing synthetic bile acid, as well as a small amount of radioactive tracer.
Two scans are then carried out, a week apart, to measure how the body is processing bile.
Medication, most commonly a drug called cholestyramine, may be prescribed too. Dr Smale says: ‘This is an awful problem – patients spend their lives worrying about where the nearest loo is.
‘But drug treatment is effective, and can give people their quality of life back.
‘A low-fat diet can also help.’
Exocrine pancreatic insufficiency can be tested for using a stool test, which checks a patient’s enzyme levels.
‘Pancreatic enzyme supplements, taken when eating, can replace the enzymes that are lacking,’ Prof Sanders says.
If you feel bloated after eating bread it could be due to a bacterial overgrowth
There are millions of microbes – bacteria, fungi and viruses – living inside the human gut and they play a key role in digestion and immunity. If food begins to move too slowly through the digestive system, bacteria can grow out of control. This can cause an imbalance in the internal ecosystem – known as small intestinal bacterial overgrowth, or SIBO.
Early signs are abdominal pain, queasiness, fatigue, bloating, passing a lot of gas, and diarrhoea or constipation.
The condition can worsen, hindering nutrient absorption. This could lead to weight loss or anaemia because your body does not get enough fuel or iron.
If you feel bloated after eating bread it could be due to a bacterial overgrowth.Early signs are abdominal pain, queasiness, fatigue, bloating, passing a lot of gas, and diarrhoea
Some studies suggest up to 80 per cent of those diagnosed with IBS have SIBO.
It is commonly seen in those who have coeliac disease, too.
According to Dr Smale, symptoms can be particularly acute after eating lots of carbohydrates such as bread, pasta and rice.
‘Carbohydrates are broken down sugars in the stomach, which then ferment,’ he says.
‘This process produces gas, which leads to bloating and sometimes belching as well.’
Over-the-counter medicines including proton pump inhibitors, which are sometimes prescribed to stop heartburn and indigestion, could also trigger the condition.
This is because they can reduce acid in the stomach that normally kills bacteria, helping it to grow in places it wouldn’t normally.
A gastroenterologist can diagnose SIBO with a breath test, which involves swallowing a drink containing a sugar and then breathing into a balloon every 15 minutes for about three hours.
If the sample contains hydrogen or methane, it can indicate SIBO.
‘This is another tricky one to diagnose, as tests are not all that reliable,’ says Prof Sanders. ‘Once we’ve ruled out most other things, we may try it.’
A course of antibiotics can be prescribed to clear up the problem, but it is possible that the bacteria may regrow and symptoms return, requiring further medication.
I suffered for years before I learned I had coeliac disease
For most of her teenage years, Daniella Isaacs endured crippling stomach pain and felt sick after eating. Meal times were a nightmare – extreme bloating would set in even before her plate was cleared.
The 28-year-old actress and writer from North London says: ‘I was constantly battling an aching feeling in my stomach, no matter what I ate.
‘I felt nauseous and horrendously sick, but I wouldn’t actually throw up.’
London actress and writer Daniella Isaacs, 28, endured crippling stomach pain and felt sick after eating for most of her teenage years due to coeliac disease
At the time of her GCSE exams, aged 16, she’d lost a significant amount of weight – so much so that her teachers began to worry. ‘Everyone thought I wasn’t eating, but I was.’
She eventually sought the help of her GP, who diagnosed IBS and anxiety and prescribed antidepressant medication. ‘I was anxious but I knew the real problem was my stomach,’ says Daniella. Then, while at university in Bristol, her symptoms became unbearable. She says: ‘The sickness got worse and I started to feel chronically exhausted.
‘There was a period when I was napping about three times a day just to keep up with my work.’
Exasperated, she returned to her GP for a second opinion, and was then referred to a gastroenterologist.
Finally, he performed an all-important blood test and delivered a diagnosis of coeliac disease – and Daniella was put on a gluten-free diet. ‘I was so relieved,’ she says. ‘Cutting out gluten made a difference straight away.
‘Suddenly I had the energy to go out with friends like a normal person. Even now, ten years later, my stomach is so sensitive.
‘I still get very bloated after eating – possibly because I was eating gluten for a long time before I was diagnosed. But these days it’s much easier to manage.’