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.’
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.’
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;
ALL IMAGES : SHUTTERSTOCK