Do you bloat after you eat bread or pasta? You may want to read this…..

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CAPTION: Pasta contains gluten which can cause bloating

When I first published this blog on non coeliac gluten sensitivity  three years ago I had no idea that it would cause such a stir and still be getting thousands of views  a week from  all over the world several years later.

As the hits grew and grew it got me thinking – if there’s this much interest  – how about a book?  My  experience as a health journalist interviewing  dozens of people with gut problems  for magazines and newspapers over 20 years had taught me that  most people with gut complaints wait an awful long time to  get to the bottom of what’s wrong with them.Some of them just give up and put up with it – letting their gut problems dictate their life and in some cases ruin it. What about if I could put all the information about gut problems in one place and help them along the way?

Luckily, I managed to enlist help and advice from Professor Julian Walters a consultant gastroenterologist at Imperial College in London and together we landed a book deal  with Hammersmith Press. Our book:’What’s Up With Your Gut? is scheduled to be published in  June 2016  and is available to pre-order at Waterstones  now https://www.waterstones.com/book/whats-up-with-your-gut/jo-waters/professor-julian-walters/9781781610671 . An e-book will be published in June too –  if you subscribe to the blog I’ll keep you updated.We hope you’ll find the book a really useful guide to all those  gut conditions that can make you feel  so uncomfortable – causing gas,bloating, diarrhoea, wind, burping and constipation. Some of the conditions the book  describes are quite easy to test for, others are diet-related or related to gut bacteria and infections or even in rare cases cancer. We’ve written the book for the millions of people worldwide like you who have troublesome guts – to help you find out what’s wrong and get your symptoms under control at long last.It’s not a replacement for seeing a doctor but it will  hopefully give you some useful pointers – in plain English too.

Now back to non coeliac gluten sensitivity……

It’s a mystery that has puzzled gastroenterologists for years. Why do they see so many patients who complain of bloating ,diarrhoea and stomach pain after eating foods  such as bread and pasta, but who test negative for coeliac disease? And more importantly why do many appear to get better when they switch to a gluten-free diet?

Yes, a minority  will test positive for coeliac disease , an auto immune condition where the body produces antibodies to gluten ,a protein found in wheat and other grains including barley and rye. The antibodies cause damage to the villi that line the small intestine (their job is to  absorb food). Eventually, the villi shrink and food and nutrients begin to pass through the  body without being absorbed leading to vitamin and mineral deficiencies.

Doctors can diagnose coeliac disease with a blood test for antibodies and a biopsy to test for damage to the lining of the gut. If patients test  positive they must avoid gluten for the rest of their lives and their symptoms will largely disappear unless they accidentally eat gluten hidden in restaurant meals  for instance.

‘Most were told they didn’t have coeliac disease and just told to get on with  it’, admits Dr Kamran  Rostami , consultant gastroenterologist at the Luton and Dunstable Hospital, Bedfordshire.’ I’ve  seen so many patients  like this, but  many of them told me they got better if they stopped eating foods containing gluten.’

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CAPTION: Is gluten causing your unexplained bloating?

Many gastroenterologists  like Dr Rostami now believe that these patients do actually have a medical condition:it’s called Non Coeliac Gluten Sensitivity  (NCGS)  and has similar symptoms to coeliac disease, but  does not appear to involve the immune system or damage the lining of the gut. Crucially though, the symptoms go away if the patients avoid foods containing gluten.

By no means all doctors believe NCGS exists – mainly because no one understands what causes it and there is no diagnostic test for it – but it is now  gaining wider acceptance , mainly due to a flurry of new research in the last three years – and doctors say this has been driven by patients.

Last November Dr Rostami wrote an article in the British Medical Journal  describing a patient who had been troubled by abdominal pain, diarrhoea ,bloating,joint pain,fatigue and many other symptoms. He tested negative for coeliac disease but his health improved dramatically after he switched to a gluten-free diet. After the article was published Dr Rostami received scores of  emails from doctors and patients wanting to know more about NCGS  and he is still receiving them.

Dr Rostami says : ‘It is now becoming clear that, besides those with coeliac disease or wheat allergy, there are patients with gluten sensitivity in whom neither allergic nor autoimmune mechanisms can be identified.

‘It has been estimated that, for every person with coeliac disease, there should be at least six or seven people with non-coeliac gluten sensitivity. Gluten sensitivity may therefore affect 6 to 10 per cent of the general population. This means approximately 4 to 7 million people in the United Kingdom have this condition, and the vast majority are unaware of their sensitivity to gluten.’

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CAPTION: Is  the bread  basket to blame?

 What should you do if you think you have  NCGS?

Perversely, the advice is to carry on  eating foods containing gluten  at least until you can get tested for coeliac disease. ‘ It’s very important coeliac disease is eliminated first ‘, advises Professor David Sanders , a consultant gastroenterologist at the Royal Hallamshire Hospital , Sheffield, and chair of the charity Coeliac UK’s Medical Advisory Board.’ If this been eliminated then it might be worth a patient being put on a trial of a gluten-free diet – in my experience it does help in many cases.’

Today, I’ve written about the experiences of  50-year-old Sue Clark from Luton in the Daily Mail Good Health section http://www.dailymail.co.uk/health/article-2439660/How-wheat-intolerant–know-If-youre-feeling-bloated-tired-victim-hidden-epidemic.html Sue was recently diagnosed with NCGS , after suffering from bloating, fatigue  and diarrhoea since the age of eight. Sue had been told she had “grumbling appendix” as a child  when she suffered tummy cramps. Later she was told it was Irritable Bowel Syndrome that was to blame and  told to eat a high fibre diet which made her symptoms worse. In her thirties her GP just dismissed her symptoms as signs of stress.

But after seeing Dr Rostami earlier this year and testing negative for coeliac disease,Sue was eventually diagnosed with NCGS and switched to a gluten-free diet. Now her symptoms have disappeared. She’s got her energy back , has lost two stone and has no more stomach pain or diarrhoea. She just wishes she’d been diagnosed years ago .

The worrying thing is that there could potentially be millions of people just like Sue in the UK .If you know someone this article could help – please tell them  about  the site as this is exactly the reason I write this blog – to help people find out what’s up with their health.

In case you’re interested here are some other links to other articles I’ve written about gut problems;

http://www.dailymail.co.uk/health/article-2255492/Bile-acid-diarrhoea-For-40-years-doctors-said-I-IBS-In-fact-hormone-problem-cured-simple-pill.html

http://www.dailymail.co.uk/health/article-1350238/Feel-bloated-Cramps-The-problem-BRAIN.html

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You’ve been told you have IBS but could you have BAD ?

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CAPTION: Always on the loo?

Until a few weeks ago I’d never heard of bile acid diarrhoea (let’s call it BAD). Despite writing about all manner of tummy upsets for quite a while now – including Irritable Bowel Syndrome (IBS), Crohn’s disease and ulcerative colitis to name but a few – I’d never come across this particular gut nasty.
But then I spoke to Professor Julian Walters, professor of gastroenterology at Imperial College, London, and learned that up to 500,000 people in the UK who have been diagnosed with Irritable Bowel Syndrome – may actually have BAD instead.
Why does it matter? Well, according to Professor Walters, BAD is comparatively easy to treat and there’s a diagnostic test and effective medicine you can take for it – where as the diagnosis and treatment for IBS is far more complicated and seems (to a layman like me at least) to be a more let’s suck-it-and-see-if-it-works approach.

Why don’t more people know about BAD?

I can’t be the only one who is wondering why BAD is not on the radar of more doctors(and patients). By contrast, coeliac disease has become fairly well-known now as has Crohn’s disease. But BAD affects potentially far more people, so why is there is no information about it?
‘Most patients – and doctors – are unaware that bile acid diarrhoea even exists and that there is a diagnostic test and effective drug treatment available,’ explains Professor Walters.
‘IBS is estimated to affect four million adults in the UK; of those 1.3 million have diarrhoea as the predominant symptom. However, its cause is often difficult to diagnose and patients may undergo several investigations, including those for inflammatory bowel disease, colonic cancer, coeliac disease and chronic infections, without a definitive cause being identified or effective treatment.’

Freedom after 48 years

Judith Fulton who I interviewed for the Daily Mail Good Health section http://www.dailymail.co.uk/health/article-2255492/Bile-acid-diarrhoea-For-40-years-doctors-said-I-IBS-In-fact-hormone-problem-cured-simple-pill.html suffered from unexplained daily bouts of watery diarrhoea for over 40 years. She had countless tests including the invasive kind most of us would rather avoid if it isn’t absolutely necessary – doctors just said it was IBS though -and they offered her no treatment.
When Judith read about Professor Walters’ research though it was a light bulb moment and she tracked down his email on the internet and asked him for a consultation. She was later diagnosed with BAD and after treatment with the drug cholestyramine (Questran) her symptoms disappeared within a few weeks. After forty-eight years of suffering she is now free to leave the house without researching where the nearest toilet is. That’s what I call a result and partly why Judith was willing to be interviewed about such an embarrassing health problem – she wants more of us to know about it.
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CAPTION: FREEDOM TO GO OUT WITHOUT RESEARCHING THE NEAREST LOO

A bit about bile acid (before we go on)

I won’t bore you with a full blown biology lesson, but in a nutshell: bile acids are essential for digestion and absorption of fats and fat-soluble vitamins in the small intestine. The liver produces large amounts of bile acids which flow into the intestine every day, but only relatively small quantities are lost from the body. This is because approximately 95 per cent of the bile acids are recycled back to the liver from the ileum (part of the small intestine). But in bile acid diarrhoea – bile acid is overproduced and the excess bile passes into the colon causing watery diarrhoea.
Bile acid diarrhoea is also associated with Crohn’s disease, a chronic severe condition characterised by inflammation, ulcers and bleeding that may affect any part of the gastrointestinal tract, including the terminal ileum (the end of the small intestine). This is because Crohn’s causes inflammation and reduces absorption of bile in the intestine and this sometimes necessitates removal of the ileum. This is referred to as bile acid malabsorption as bile is not as absorbed as well in the intestine.
‘In idiopathic bile acid diarrhoea though – patients don’t have a problem with absorbing the normal amounts of bile produced, explains Professor Walters.’Their diarrhoea is triggered by a hormone disorder which causes overproduction of bile and it is this excess bile which causes the diarrhoea – this is an important distinction,’ explains Professor Walters.

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CAPTION: Bile acid is produced in the liver

Hormone deficiency is the cause

Professor Walters conducted research which found that the trigger for idiopathic BAD (from an unknown cause not related to Crohn’s disease) is a deficiency in a hormone called FGF19, which normally switches off bile acid production when bile acid is reabsorbed.
‘At the moment we don’t know why this happens – it doesn’t appear to be genetic although some patients report their symptoms started after a gastrointestinal infection.’

Symptoms
Unfortunately the symptoms of BAD can be hard to distinguish from diarrhoea caused by IBS.These include up to ten watery bowel movements every day, usually with an urgent need to go and frequently resulting in accidents or faecal incontinence. There is also some bloating and abdominal discomfort.

Diagnosis and treatment

Unlike IBS though, there is a diagnostic test available for BAD. It’s called the SeHCAT test(which stands for selenium-labelled synthetic bile salt) and involves two full body scans seven days apart. In a person with normal bile acid production more than 15 per cent of bile is detectable in the body after seven days, but in people with BAD this figure can be as low as one to five per cent.
Once diagnosed with BAD patients can be prescribed cholestyramine and around two-thirds of patients are reported to respond – although this admittedly may take some time until the correct dosage to control symptoms is found.
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CAPTION: What’s really causing your upset tummy?

Hang on a minute though…..
As with many things in medicine though, not everyone agrees. The National Institute for Clinical Excellence, for instance, recently decided although it was’promising’ there was insufficient evidence to recommend the SeHCAT test. Professor Carole Longson, NICE health technology director, said there was also little evidence of the clinical effectiveness of the drugs used to treat the condition and also whether bile acid diarrhoea is a primary or secondary condition.

Professor Nick Read,a gastroenterologist and adviser to the IBS Network is somewhere in between the two camps. He doesn’t believe BAD is a medical condition in its own right – just a symptom of IBS diarrhoea, but on the other hand he says he prescribes cholestyramine frequently to people with IBS where diarrhoea is their predominant symptom and it works really well. He told me:’I find that cholestyramine is an effective drug which mops up bile acid in the intestine. I’ve seen patients who have had diarrhoea for years dramatically improve using this treatment.’

Whatever the mechanism – the upshot is if you’ve had diarrhoea for years and been given an IBS diagnosis and told to live with it, you might want to ask about getting a SeHCAT test. Just like Judith the test (and the treatment) might give you your life back.

Watch Professor Walters here: http://www.youtube.com/watch?v=-O3uR0iDObw

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Here’s some more of my articles about gut health you may want to read.
http://www.dailymail.co.uk/health/article-2194464/My-doctors-orders-Crisps-doughnuts-strictly-veg.html
http://www.dailymail.co.uk/health/article-1350238/Feel-bloated-Cramps-The-problem-BRAIN.html
http://www.dailymail.co.uk/health/article-1313821/For-TEN-YEARS-Lucy-told-worry-stomach-cramps-In-fact-chronic-disease-eating-away-gut.html