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
Reblogged this on whatsupwithyourhealth.wordpress.com and commented:
This article now regularly gets about 500 views a week from all over the worlds so I’m shamelessly reblogging it as there is obviously a lot of interest in this subject. Anyone want to give me a book deal?
I have a 14 year old autistic son who had severe food intolerance St birth that landed him in special care. I have been diagnosed with cfs and fibromyalgia that fluctuates wildly. Doctors described it as atypical as I can be superbly fit for ages then really ill and unable to walk due to severe ataxia and vertigo. Things deteriorated very badly recently. I then found that when I was diagnosed with fibro the specialist had advised the GP to test for coeliac antibodies, which they failed to do. I switched to a gluten free diet as an experiment and the symptoms subsided hugely and within days. The GP is now testing both me and my son for coeliac but says that at the very least gluten intolerance is implicated. My other son suddenly developed severe allergies too. Shame nobody made the connection for so many years.
Thanks for your feedback Jo hope this article was of use to you.
I recently tested negative for celiac disease. But I keep getting bloated when eating ANY kind of bread, pasta, etc.. I do not know what to do or how to help myself. Please help me. I’ve been suffering by this for years now, and no one has been able to help.
See you doctor and ask about whether its worth trying a gluten free diet. Some gastroenterologists say even if a person tests negative for coeliac disease it’s possible they may have non coeliac gluten sensitivity and their symptoms improve when they follow a gluten free diet. If anyone reading this hasn’t been tested for coeliac disease though – doctors will advise you to carry on eating foods containing gluten until you have been tested.
Hi im 48 yrs old , when i eat food my stomach , swells either on tje ldeft or right. I then massage and and it moves. I suffer from constipation, lately there was blood in my stool, but it has stopped certain cause me to have stomach cramps,
Had a blood test today .bloated stressed after food got diarrhea straight after eating had ibs 10 years .bread makes me look pregnant. Pains in tummy.iam 50 yr old female. Worried.
I’m a 27 year old male. I’m active, a runner, and been an athlete most of my life. But after almost every meal I ate (for as long as I can remember), my stomach would bloat, I’d get tired and sluggish, and feel like I was in a daze for the remainder of the day. I’d wake up most mornings tired, with sever joint pain in the knees, ankles, and hands. I never bought in this “gluten sensitivity” stuff until I got tired of feeling like crap all the time and tried it. I can’t tell you how much better I feel having cut gluten out of my diet. It’s been 6 months for me. It’s incredible and worth trying, despite the jabs friends and family members may take at you for having a “gluten sensitivity.” Benjamin Franklin said this, and I think it’s worth remembering, “Eat to please thyself, but dress to please others.” Eat for yourself. Eat what makes you feel good. Cut out what makes you feel bad. Listen to your body. Cutting gluten out of your diet is worth trying if you’re tired of feeling bloated, sluggish, or experiencing joint pain every day.
Over 8yrs ago I went to my doctor with this problem, whenever I ate bread, pasta, cakes, or sauces made with flour I would bloat out and look about 8months pregnant. My hubby and children found it highly amusing that as I burped my stomach shrunk back to normal size, however the pain sometimes was excruciating. Doctor tested me for coeliac disease and when it came back negative he told me it must be IBS, I argued for months that it was not IBS but sadly was never given any acknowledgement to the fact that when I did not eat the above foods I would be absolutely fine. Since then I have just managed myself to the best I can, however dinners out have been problematic and required me going home immediately after to deal with the onset issues that I knew would arise within a few hours. Finally you have given me a diagnosis that sounds so much like what I suffer with, now I can go to my new doctor and bring this to their attention and hopefully get on track to sorting myself out. Thank you so much for this article. (Student nurse)
Thanks Heidi – glad it was helpful and don’t forget you can read more about this in my book ‘ What’s Up With Your Gut? ( Hammersmith Books) available on Amazon.
Suffered for decades with these symptoms after eating – bloating, wind, extreme discomfort as stomach swelled up and felt like my insides were being squashed upwards through my throat. Occurred around 2- 3 hours after eating and most painful phase lasted 3 hours before settling down. It’s horrible to go through it, especially at night, robbing you of sleep and rest. Doc diagnosed IBS and gave me a website to read up on it. Anyway, I recently had 2 weeks off bread, cakes, crisps biscuits, pasta, sandwiches, processed foods etc. in desperation and ate basically only fruit, veg, dairy, meat and salad. No symptoms, and the best weeks sleep i have had in years- I was literally a different person – reduced fatigue, happier etc.. Went out for a meal the weekend after and had a sticky toffee pudding – wham, bent double with the same disabling symptoms 2 hours after. I’m back on the wagon, but boy, do I miss Marmite toast! My only tip to help prevent symptoms at night is to eat a slice or 2 of lemon – peel, seeds and all – seems to kill off the reaction for me.
Thanks for your comments Toby, worth asking your GP for a test for coeliac disease ( assuming you haven’t had one already?).
That was very informative. The strange thing for me is if I eat a couple of slices of bread from the bakery I have no problems. However, when I eat pitta bread and pasta I get bloated.
Thank you for writing such a helpful article.
Thank you for your response.
It is an interesting article! I believe I have NCGS, because I have the same symptoms after eating rice, pasta and bread while my celiac test was negative!
Is it a permanent decease or it will be gone after stop eating pasta, rice and bread for sometime?
Thanks you so much for the article!,
Thanks for your feedback Mahn , glad it was useful, if you’re interested in reading more you can buy my book ‘ What’s Up With Your Gut?, published by Hammersmith Books and available to buy on Amazon in paperback or as an e-book.
I have several auto immune disorders from Psoriatic Arthritis, IBS, Lichen Sclerosus, a thick coating on my tongue, to numerous allergies to moulds, blue cheeses, tree pollen, etc. For years I have suffered bouts of diarrhoea when eating out, after eating fish in batter, etc which doctors have put down to the IBS and getting older. I often look 8 months pregnant but after a bout of particularly bad stomach pains and diarrhoea I checked a cereal I had always eaten to find it now contained wheat and barley in a new recipe. I decided to cut out gluten and Hey Presto! Bloating, stomach cramps, tongue coating and diarrhoea have stopped in just a week. Reintroduced some bread, in the form of sour drought and within and hour looked expectant again. I don’t know if it is the food stuffs, chemicals used on them when growing or the processing but something is definitely going on for so many people to be getting these symptoms.