This condition affects millions of Britons, and is easily misdiagnosed

Then, three years ago, she was diagnosed with bile acid malabsorption

She was diagnosed by her GP several times, often making matters worse

Millions of people in the UK are living with mystery gut problems they struggle to get diagnosed correctly.

They’re often told they have irritable bowel syndrome — for which there’s no specific treatment — but experts believe a significant proportion may actually have other conditions that, unlike IBS, can be tested for and even cured.

That’s the thinking in a new book, co-authored by a leading gastroenterologist, which suggests this misdiagnosis means patients can spend years without treatment — or receiving the wrong treatment, which could make symptoms worse.

Michelle O’Connor was one of those affected. For 22 years she struggled with debilitating gut symptoms.

‘My stomach bloated so much people asked me if I was pregnant, and it was also really painful,’ recalls Michelle, 43, a nurse from Matlock, Derbyshire.

Millions of people in the UK are living with mystery gut problems they struggle to get diagnosed correctly

She also had to often rush to the loo because of diarrhoea. Michelle first saw her GP about her symptoms when she was 18, but it proved to be just the first of a series of frustrating experiences.

‘At first I was told that it was irritable bowel syndrome and I should eat more fibre, but this made my symptoms worse.

‘At another stage I was given loperamide pills to control my diarrhoea.

‘On many occasions my GP said my symptoms were down to being “too stressed” and other times he said I was suffering from depression and panic attacks.’

Over the years she had tests for coeliac disease and lactose intolerance, as well as two colonoscopies — where the bowel is examined using a flexible tube with a camera at the end — to check for Crohn’s disease.

She was also tested for overgrowth of candida (a yeast) but the results were negative.

By her mid-20s Michelle’s symptoms had worsened. ‘I worked on a gastroenterology ward and remember thinking that my problems were worse than the patients’.

‘Sometimes I’d have up to ten bouts a day of diarrhoea, including at night. It left me feeling drained.’

Over the next decade Michelle’s long-term relationship broke down — partly because of the stress of her illness.

She also made the difficult decision not to have children ‘because I thought I’d be too ill to look after them’.

Then, three years ago, Michelle’s cousin, a medical sales rep, heard a gastroenterologist speak at a meeting about severe IBS and urged Michelle to seek a referral.

Michelle O’Connor was one of those misdiagnosed with irritable bowel syndrome. For 22 years she struggled with debilitating gut symptoms

The specialist arranged six tests, including one for bile acid malabsorption (also known as bile acid diarrhoea), a condition that affects up to a million Britons.

It’s caused by an excess of bile acid, which is produced by the liver to break down fats.

The result was positive and Michelle is now having treatment that’s dramatically improved her symptoms.

‘When I found out about how common this condition is I wondered why no one tested me earlier,’ says Michelle, who last year helped set up a charity to raise awareness of the problem.

In fact, this is just one of number of relatively unknown but surprisingly common gut complaints that could be the root cause of mystery symptoms such as bloating and diarrhoea in millions, according to Professor Julian Walters, a consultant gastroenterologist at Imperial College Healthcare in London, and co-author of What’s Up With Your Gut?

‘Bile acid diarrhoea, for instance, is estimated to be the cause of a third of irritable bowel cases where diarrhoea is the predominant symptom,’ he says.

However many patients are not referred early enough for tests and the condition often goes undetected.

After some testing, Michelle was diagnosed with bile acid malabsorption (also known as bile acid diarrhoea), a condition that affects up to a million Britons

One survey of 706 British gastroenterologists found only 6 per cent of patients referred to them with chronic diarrhoea had been tested for bile acid malabsorption as a first-line investigation.

‘I see an endless stream of patients told they had IBS or chronic constipation, for instance, often suffering years of misery with their symptoms but simple tests could pinpoint the real cause,’ says Professor Walters.

‘The problem is they often end up being given treatments that could make their symptoms worse. But with the right treatment, their symptoms often clear up.’

Here we look at seven little-known, but common, gut conditions. Could one of these explain your symptoms?

GLUTEN INTOLERANT BUT DIDN'T KNOW

Suffer from abdominal pain, bloating and diarrhoea? And any of the following?: ‘Foggy’ brain, eczema, headaches, fatigue, joint and muscle pain, depression and anaemia.

These are symptoms linked to non- coeliac gluten sensitivity (NCGS), a form of food intolerance that disappears when you avoid foods containing gluten (a protein found in wheat, barley and rye).

It’s similar to coeliac disease — an autoimmune condition where the body produces antibodies to gluten, damaging the gut.

Non- coeliac gluten sensitivity (NCGS) is similar to coeliac disease — an autoimmune condition where the body produces antibodies to gluten, damaging the gut

Non-coeliac gluten sensitivity was only first recognised the mid-Eighties, but between four and seven million Britons could be affected, with many not realising it, according to a paper published in the BMJ in 2012.

But the condition is controversial — some doctors are sceptical about it and suggest that it is, in fact, IBS.

Others believe that it isn’t gluten that causes the symptoms, but FODMAPs (Fermentable Oligosaccharides, Disaccharides, Monosaccharides And Polyols).

These are sugars found in foods, including onions, garlic, apples, pears, honey and wheat; some people are also affected by dairy.

The theory is that FODMAPs are poorly absorbed in the intestine and enter the colon where they are fermented by the bacteria, causing bloating, wind and diarrhoea.

If the patient is wrongly diagnosed with irritable bowel and told to eat more fibre, this could make their symptoms worse.

Gluten can be found in most breads and pastries, and is a mixture of two proteins most commonly present in wheat

Is there a test? No, but doctors say it’s important to be tested for coeliac disease before cutting out gluten. Tests for that include a blood test for antibodies to gluten and a follow-up biopsy.

Treatment: It’s as simple as avoiding gluten. But there are differing degrees of severity, explains Professor Walters. ‘Some people can tolerate small amounts — it’s not like coeliac disease where no gluten at all can be tolerated.’

DOES FIBRE MAKE THINGS WORSE?

People with constipation are generally told to eat more fibre and use laxatives, but if you have slow transit constipation, which causes infrequent stools and bloating, this won’t make any difference — and usually make it worse.

The condition can start in childhood or later in life.

Chronic constipation affects two million people, but between 15 to 30 per cent (up to 600,000 people) are thought to have the slow transit form. It can be mistaken for IBS where constipation is the predominant symptom.

It occurs when the nerves and muscle in the gut wall don’t work efficiently, so food and waste aren’t propelled at normal speed.

People with constipation are generally told to eat more fibre and use laxatives, but if you have slow transit constipation this won’t make any difference — and usually make it worse

When those affected are advised to eat a high-fibre diet to tackle constipation, the fibre overloads the bowel and it can’t shift it. Waste then builds up, causing constipation, bloating and pain.

Is there a test? Doctors can perform a transit study where patients swallow tiny plastic markers that are tracked by X-rays three days and then five days afterwards to see how quickly they move through the gut.

Treatment: This can include drugs called 5-HT4 receptor agonists — such as Resolar — which stimulate cells in the intestine involved in moving food and waste through.

Another treatment available is biofeedback, a combination of specialist dietary advice and exercises to help promote normal reflexes and not rushing to go.

BACTERIA GROWING IN THE WRONG PLACE

Small intestinal bacterial overgrowth, or SIBO, causes weight loss, bloating, fatigue and often anaemia, as well as fatty stools and diarrhoea.

Estimates vary but SIBO is thought to affect between 12 to 80 per cent of IBS sufferers.

It’s caused by too many bacteria growing in the small intestine, the part of the digestive tract that connects the stomach and large intestine (or colon). This can interfere with normal digestion.

Small intestinal bacterial overgrowth, or SIBO, causes weight loss, bloating and often anaemia, as well as fatty stools and diarrhoea

SIBO might be behind many cases (up to 80 per cent) of irritable bowel, according to Dr Mark Pimentel, an associate professor at Cedars Sinai Medical Center in Los Angeles, who has published several scientific papers on this in the prestigious New England Journal of Medicine and the American Journal of Gastroenterology.

Is there a test? Dr Pimentel favours a breath test, which measures levels of hydrogen after the patient has consumed a sugar solution — the gas is produced by gut bacteria.

If hydrogen levels rise 30 minutes to an hour after taking the sugar solution - too soon for the food to have reached the large intestine - this is evidence there are bacteria in the small intestine, But Some experts believe this test is flawed and will lead to false positives.

A more invasive option is to collect juices form the small intestine via an upper endoscopy — where a camera is inserted in the throat.

Often patients are SIMPLY offered a trial of treatment if the condition is suspected.

Treatment: SIBO responds well to antibiotics, including one called Rifaximin which is not currently licensed in the UK for this condition.

Patients treated with Rifaximin reported improvements in symptoms that lasted for more than 12 weeks after stopping treatment, according to Dr Pimentel’s research.

He says this treatment may ‘reset the gut’s microbial diversity’.

Professor Walters says other antibiotics, such a ciproflocacin and doxycycline, can be helpful to people with SIBO.

TROUBLED BY TOO MUCH BILE

Bile acid malabsorption (or bile acid diarrhoea, BAD) is sometimes preceded by abdominal bloating or cramping pains.

The diarrhoea occurs in urgent, watery bouts (up to ten bouts a day are not uncommon — it can also occur at night, another clue); it may be acidic.

It’s thought to affect up to one million Britons but is often misdiagnosed as IBS.

It is caused by an excess of bile acids, which are made by the liver to absorb fats.

‘In BAD, instead of the majority of bile acids being recycled s they should, they pass into the colon, stimulating the production of salts and water secretion and this results in chronic watery diarrhoea,’ says Professor Walters.

Bile acid malabsorption (or bile acid diarrhoea, BAD) is sometimes preceded by abdominal bloating or cramping pains

There are three different types of BAD but by far the most common is thought to be triggered by a deficiency of the hormone fibroblast growth factor 19, which switches off BILE production.

In healthy people, when bile is reabsorbed by the intestine, the body makes more of this hormone.

But in people with BAD, less of the hormone is produced, in turn resulting in more bile being produced than the intestine can absorb.

Eating fibre, as people with these symptoms are often advised, can make it worse by increasing bowel movements.

Is there a test? Yes — the SeHCAT test involves taking a drug called selenium-labelled synthetic bile salt, a man-made bile salt that contains a radioactive tracer that shows how well the drug is retained by the body (and therefore, how well bile acids are reabsorbed by the body).

In someone with normal bile function, more than 15 per cent of SeHCAT is detected in the body after seven days, having been absorbed over and over again.

In someone with normal bile function, more than 15 per cent of SeHCAT is detected in the body after seven days

But in people with bile acid diarrhoea it can be as low as 1 to 5 per cent.

The National Institute for Health and Care Excellence says the £200 test should only be used in research settings because there’s insufficient evidence that it’s useful and cost effective.

But many gastroenterologists were surprised by this decision, according to Professor Walters.

He says the SeHCAT test is still cheaper than a £500 colonoscopy, which patients with BAD are often given.

‘We hope the guidance will be revised,’ he says.

Treatment: Drug treatments for BAD contain a resin which binds to bile acid in the intestine to form an insoluble substance which can be passed out in a stool.

Side-effects can include flatulence and bloating — but with the correct dosage these disappear.

‘I start patients on a low dose of powder or pills and gradually increase them until symptoms are under control — sometimes it can take three to six months to get this right,’ says Professor Walters.

IBS SYMPTOMS CURED IN WEEKS

Weight loss, bloating, pain with chronic, severe, watery diarrhoea could be a sign of microscopic colitis, an inflammatory bowel condition which is estimated to affect between 300,000 and 600,000 people in the UK.

It is three times as common in women as men and is sometimes mistaken for IBS.

It’s caused when the bowel doesn’t absorb liquid from waste efficiently, causing more water to flow through the colon.

One theory is that it’s triggered by certain drugs including non steroidal anti-inflammatories (such as ibuprofen), proton pump inhibitors (given for acid reflux) and aspirin.

IBS is caused when the bowel doesn’t absorb liquid from waste efficiently, causing more water to flow through the colon. Possible causes include cigarette smoking

Other possible causes include cigarette smoking or a reaction to an infection.

Is there a test? The condition can be detected via a biopsy during a colonoscopy – the colonoscopy itself it not enough.

‘This condition can be easily missed unless biopsies are also taken during colonoscopy,’ says Professor Walters.

Treatment: Budesonide, a type of steroid tablet, can rapidly clear up microscopic colitis within three months but some patients may need to take it for several years.

IS IT LINKED TO CANCER THERAPY?

LEGACY OF RADIOTHERAPY Radiotherapy to the pelvic area for cancer can damage the tissue, causing bowel and bladder symptoms months or even years after treatment, so the cause isn’t always obvious. Symptoms can include bloating and noisy rumblings, abdominal pain, trouble controlling your bowels, diarrhoea and constipation. Around 240,000 people are thought to be affected. Is there a test? They check your medical history. But scans may show scarring and fibrosis of pelvic tissue. Treatment: Drugs, dietary advice, pelvic floor exercises and antibiotic treatment may all help symptoms. Specialist treatments include hyperbaric oxygen therapy, where patients breathe in oxygen at higher concentrations to boost blood flow in damaged tissue. The Pelvic Radiation Disease Association — www.prda.org.uk/ what-pelvic-radiation-disease — can offer advice about referrals. Advertisement

Radiotherapy to the pelvic area for cancer can damage the tissue, causing bowel and bladder symptoms many months, even years, after treatment, so it’s not always obvious what’s causing them.

Symptoms can include bloating and noisy rumblings, abdominal pain, trouble controlling your bowels, diarrhoea and constipation.

With many more surviving cancer, pelvic radiation disease, as it’s known, is on the increase: around 240,000 people are thought to be affected.

Is there at test? Diagnosis is made by taking a medical history - but scans may show scarring and fibrosis of pelvic tissue.

Treatment: Drugs, dietary advice, pelvic floor exercises and antibiotic treatment may all help symptoms.

Specialist treatments include hyperbaric oxygen therapy, where patients breathe in oxygen at higher concentrations, boosting blood flow in damaged tissue.

The Pelvic Radiation Disease Association — pdra.org.uk — can offer advice about referrals.

Adapted from What’s Up With Your Gut by Jo Waters and Professor Julian Walters is published on October 12 by Hammersmith Press at £14.99.