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Do you have IBS-D, or do you have Habba Syndrome? That’s what Dr Saad F Habba would like to know. He’s coined the term Habba Syndrome to describe a condition that causes chronic diarrhea and is caused by a faulty gallbladder, and he believes that millions of IBS-D patients have been misdiagnosed and actually have Habba Syndrome.

This is the theory: when the gallbladder goes haywire, you end up with too much bile in the intestines, and the bile causes diarrhea. This, of course, is the same thing that happens to some patients who have had their gallbladders removed. The treatment is the same too, with drugs such as Questran used to bind the bile.

One particular feature of Habba Syndrome is diarrhea straight after a meal, which is called post-prandial diarrhea, and occurs because bile acids are naturally released directly after meals. This is something that many patients with diarrhea-predominant IBS experience.

Sound interesting? For me, one of the best things about this theory is that there’s a specific test that can be used to see whether your gallbladder’s gone bad. It’s called a HIDA or DSIDA scan with CCK injection, which in layman’s terms means that you get injected with some mildly radioactive stuff to highlight the bile, lie in one of those big white scanning machines, and wait while the docs study the flow of bile through your body.

This is a fairly new theory, so who knows whether we will all be having HIDA scans in the future. Theories like this tend to take years to really gain traction.

Lately, though, Dr Habba has taken his theory even further. In an article published in 2010, he suggested that IBS-D doesn’t exist at all. He studied 303 patients and concluded that 98% of them were suffering from a ‘true clinical entity’ rather than the ‘vague entity’ that is IBS.

Of the 303 patients, he concluded that 41% had Habba Syndrome, 23% had diarrhea caused by gallbladder removal, 8% lactose intolerance, 7% microscopic colitis, 4% celiac disease or gluten sensitivity, and then a handful of patients had multiple diagnoses, drug-induced bowel problems, infectious colitis or other problems. In follow-ups, 98% of patients improved significantly when their specific problems were treated appropriately.

In other words – IBS-D, to all intents and purposes, is fictional. Wow.

Now, this was only one study, and I’m sure there are many doctors who are busy refuting the theory, because that’s how medicine works. But I have to say that this is a fascinating idea, and it addresses what it is, to me, one of the stupidest aspects of the IBS diagnosis, and that is the fact that people who have their gallbladders out and subsequently suffer from bile-related diarrhea get told they have IBS. How can that possibly be called IBS? You might as well diagnose someone with IBS if they’re taking 20 laxatives every morning, as if the mere presence of severe diarrhea automatically means IBS.

It seems obvious to me that post-gallbladder removal diarrhea is not IBS-D, just as diarrhea when you’ve had half your colon cut out isn’t IBS-D, so why doctors insist on calling it IBS I have no idea.

But maybe the problem isn’t just that doctors call gallbladder-related diarrhea IBS. Maybe the problem is that they call anything IBS…and none of us have irritable bowels at all.

I’m posting a page today called simply “Please Help IBS Tales!” because that’s exactly what I need – your help.  Running a website can be tough some times.

I’ve run the site since 2003, and I don’t think it’s an exaggeration to say that I love it. It’s certainly helped me through my own IBS trials, and I think it’s helped others too. I believe that it’s a genuinely good, honest site about IBS, and that’s why I want to see it doing well.

So – please do help if you can. That might be through promoting the site on Twitter or Facebook, linking to the site from your own website, making a donation, or any other help you can offer. A full list of ideas is on the please help page.

Thanks for reading.

Can you get sickness benefits in the UK if you suffer from IBS? The answer to that is yes…but not without a fight, it would seem. One of my lovely readers, Luci, has very kindly shared her experience of applying for employment support allowance (ESA), the sickness benefit that replaced incapacity benefit in 2008.

And in case you were wondering, one way to tell if someone is sick is to check whether they’ve had a shower and painted their nails. Read on if you don’t believe me…

Sophie: Hi Luci! First of all, can you tell us a bit about your history of IBS?

Luci: I have had IBS-D for about 10 years. I don’t know what set it off but when it started it was very mild and infrequent. I thought I’d eaten something and had mild food poisoning. I went to the doctors after a few months and three or four attacks and I was told I had IBS. No examination, no referrals…I was given Fybogel and sent away.

My symptoms gradually worsened over the years and the last three or four years have been horrendous. I sometimes have diarrhea 10 times a day with abdominal pain that stops my breath. Sometimes I can barely crawl to the bathroom.

Sophie: That sounds so tough – IBS can be so difficult to cope with. Can you explain a bit about the circumstances that led you to apply for employment support allowance (ESA)?

Luci: Three and a half years ago I was told that now my daughter was 12 I would not be allowed to receive single parent income support and I would be expected to take a job or lose the benefit. I had to go to the job center to apply for jobseekers’ allowance. I was told I would have to attend interviews regularly, attend the job center every two weeks to sign on, and be seen to be actively looking for work. If I turned down any job offered my money would be cut, which would mean my housing benefit would be cut and my home put at risk.

I was terrified. I had to tell this total stranger about my IBS, in detail, which was intensely embarrassing for me. She informed me that if I felt I was too ill to work then I should be claiming employment support allowance or ESA. So that is what I did – and so began the battle, just when I was at a very low ebb and least able to fight.

Sophie: Can you tell us about the application process for ESA?

Luci: I filled in a form (which was about the size of War and Peace!) and started receiving a low, basic rate. I was told that if I passed the medical the money would go up. About five months later I received a letter informing me that I would need to attend a medical in Brighton, about 45 minutes drive away from Eastbourne where I live.

I phoned the Department for Work and Pensions (DWP) to explain that I barely leave the house, don’t even travel into town without someone with me, don’t own a car and don’t use public transport due to my IBS being sudden and unpredictable. They told me I would need a doctor’s letter stating this, and getting that was a job in itself as I needed to organize a lift to and from the doctor’s.

The response to the letter was that they didn’t deem it necessary to give me a home visit but would pay for a taxi to and from the medical center. I was absolutely dreading it but they made it very clear that if I did not attend I would automatically fail the medical and would lose the money.

My advice to others – do NOT personally attend medicals! If you normally do not travel you must push for a home visit. If you attend the medical center and you then claim you do not normally travel you will fail the medical. ‘You got to the medical, so you can go to work’, so don’t struggle! Insist on a home visit. I wish I’d known that. Needless to say, I failed the medical.

Sophie: What happened after you’d failed the medical Luci?

Luci: I appealed. This is a daunting process but while your appeal is being processed they have to pay you. It’s a very low rate but at least I knew we would be able to eat and my rent would be paid. Six months later I received a tribunal date.

I had to go to a very posh hotel conference room in my home town. There was a judge and a doctor in attendance. I was asked several very personal questions over about half an hour. I had as evidence a letter from my GP who knew me very well stating that it would be quite impossible for me to attend work with any regularity due to my IBS being so severe and so unpredictable.

The doctor commented that (and I quote), ‘You seem clean and washed, your nails are painted, I think you are simply lacking confidence and a job would be good for you.’ That was that. I had failed the appeal. I was totally devastated, utterly undermined, and I felt like a lazy, workshy scrounger.

I phoned the DWP and as I was now suffering from depression and worsening IBS I was told to reclaim, which you can only do if your condition has worsened or you have a new condition. And so the process all began again. I was absolutely as low as I could be.

I was sent, over the next six months, to a dietitian, a gastroenterologist, and for cognitive behavioral therapy or CBT, all the while trying tablet after tablet to combat depression. And all the time I was dealing with ever increasing IBS symptoms. No wonder I was depressed! As far as the specialists were concerned there was nothing wrong with me. This conclusion was not going to help my next appeal…

Sophie: How did you prepare for the appeal?

Luci: I started to collect evidence. Letters and summaries from all the specialists I had seen. Most did not want to write letters and most would not commit to directly saying I could not work. Those that did would say things like, ‘It would be difficult’ or simply wouldn’t say either way. So I started to keep an IBS/depression diary: details of toilet visits, pain, quality of life…everything. It was not easy. I wanted to be brave and try to put on a brave face and constantly had to remind myself to stick to the facts.

I submitted the diary as evidence. I insisted on a home visit for my next medical, asking my doctor for a very specific letter stating that a home visit was needed. I did not try to ‘be brave’. I was very ill on the day and as uncomfortable as it was I did not get dressed, I did not tidy up. It wasn’t easy. I so wanted to keep going and carry on despite the pain, but I also wanted to show how I would be normally.

When the doctor arrived I was marked down because I got to the front door to answer it within a few seconds and had no difficulty walking from the door to my sofa, 10 feet away from my front door. I was marked down because I offered the doctor a cup of tea, which I made properly with no problems. I was marked down for watching TV (showing I could sit for long periods without discomfort), I was marked down because I have a dog and usually managed to walk him for five minutes a day. It’s a crazy, crazy system.

Needless to say, I failed the medical and received only six of the 15 points I needed to qualify, so again I appealed. After about five months I got the new appeal date. In Brighton.

I got yet another doctor’s letter stating I could not attend. Another two months went by and I got my hearing moved to my home town. Not easy, but better. Do-able with help from a friend with a car and lots of patience!

I was preparing to face defeat as I simply could not do this anymore. About two years had passed since this whole saga began and I was truly done. I was in the conference room with a judge and a doctor again. I was asked a handful of questions, 10 minutes, no longer. They thanked me for attending and said, ‘We are both in agreement that you should have been given ESA last year and can’t understand why it was disallowed.’ And promptly overturned the decision and awarded me ESA. Just like that.

I was so shocked I burst into  tears. They were very nice and gave me a tissue and allowed me a few minutes to compose myself. I’m now waiting (three weeks later) for the DWP to sort out the paperwork, but hey…I won!

Sophie: What difference has receiving the ESA made to your life?

Luci: I keep reading the letter, over and over! I think I’m going to frame it! I can now face my future without worrying about losing my home or where the next meal is coming from. It’s that simple. I am in the work support group of ESA which means I will have a case worker who will speak to me regularly and work out if there is any work I can do around my condition.

It’s not compulsory work, they don’t cut your money and they very much work around me, which is what I want, to feel I am at least some use to society as a whole and not just ill and forgotten.

Sophie: Are there any tips you can give to other people who are applying for ESA?

Luci: Get the evidence. Any and all. Pester, telephone, visit in person, but get it! Don’t struggle through. They need to see you for what and how you are. Yes it’s embarrassing and very uncomfortable but they must see you at your worst. Don’t say ‘I’m fine’ when you are not!

It has been the most difficult time for me but all things considered I have now got the support and help I need, so as much as I would HATE to do it all again I have to say it was worth it, although you may have got a different answer during the process!

Sophie: Just one more question – I keep reading terrible things about the company ATOS that carries out medical assessments for the benefits system in the UK. Do you know if you were assessed by ATOS?

Luci: Yes, it was ATOS that carried out my medical assessment, and yes, they have an awful reputation. Many ‘trick’ questions like ‘Do you enjoy watching the soaps on TV?’ If you answer ‘yes’ to this question it is assumed you can sit comfortably for half an hour so are capable of work.

You don’t even realize at the time that these are questions relating to your claim/medical, it’s done in such a way that you think the doctor is simply being chatty and nice. Don’t be fooled! It’s a terrible system.

They don’t take into account good days and bad days so, when you are asked questions about your health you need to tell them the way you feel on a bad day. It’s a real minefield. As I said before, if you attend your medical assessment at one of ATOS’s medical centers you’ve probably already lost. If you can get there you can get to work. Crazy. Hope I haven’t rattled on too much!

Sophie: Luci, thanks so much for taking the time to share your experience. It’s awful that ill people have to go through this kind of ordeal just to get some help, but I’m so glad your appeal was successful in the end.

If any readers have experiences of the benefits system in the UK or elsewhere, please do share them in the comments section.

In my last blog entry I wrote about the low FODMAPs diet that seems to be gaining in popularity among IBS sufferers. The diet basically involves avoiding a certain type of carbohydrate to stop fermentation in the gut. One of my lovely readers, Bernadette, has tried the diet with great success and has kindly answered a few questions about her own FODMAPping experience.

Sophie: Hi Bernadette! Can you tell us a bit about your IBS background please?

Bernadette: I have had IBS-C for 26 years, and I first heard about fructose malabsorption in 2005. Fructose is the M in FODMAPS as it is a monosaccharide, a single sugar. It is found in all fruit and some vegetables, honey and high fructose corn syrup. I had a breath test for fructose malabsorption which measured the amount of hydrogen my body produced after eating fructose, and this test was negative.

A few years later (2007) I had a new GP who, after hearing my symptoms of bloating, pain, constipation etc, thought I should have another breath test for fructose malabsorption, but this time one that measured methane, as she thought I might be a methane producer and not a hydrogen producer.

I had a lactulose breath test to check whether I produced methane or hydrogen when fermentation was happening in my gut – nobody can digest lactulose, so it gives a baseline level. You produce both gases naturally, but some people produce more methane than hydrogen, and some more hydrogen than methane, and very high levels of either gas indicate high levels of fermentation.

The lactulose test showed that I was producing too much methane, and so I had another breath test specifically for fructose malabsorption, but this time one that measured my levels of methane after I had ingested fructose. This test was positive.

Interestingly, they say that methane producers are more likely to have constipation than diarrhea as a symptom. I was also tested for lactose intolerance, and that test was positive as well.

At this time I heard of the Royal Prince Alfred Hospital (RPAH) elimination diet from a girl doing the breath test at the same time. This is a very strict, low food chemical diet, where you limit the food chemicals salicylates, amines and glutamates. I had allergy problems as well as bowel symptoms, so I thought this may be more relevant to my allergy and gut problems.

I went to an allergy specialist here in Melbourne who supervises this diet, and I found the diet helped my allergy symptoms but not my gut symptoms, although the RPAH diet does help some people with gut symptoms. There is debate over here in Australia as to which is the better diet, the RPAH diet or the low FODMAPs diet. Some dietitians prefer one over the other, and a few are trying both.

Sophie: When did you first hear about the FODMAPs diet?

Bernadette: After trying the low food chemical diet for six months and still suffering from gut pain, bloating and constipation, I went to a dietitian who specialised in fructose malabsorption. By this time the research had advanced to the FODMAPs diet although the research was new so not all foods had been tested yet. They are slowly testing all the foods against the diet here in Australia.

When I tried the FODMAPs diet I found a definite improvement in my symptoms. After more than 20 years I wasn’t in pain and I could see a direct relationship between the foods avoided and my gut reactions. I feel very angry to think of all those specialists who told me my IBS was due to stress.

Sophie: What foods do you have to avoid?

Bernadatte: It is said that onion is the food that most commonly causes symptoms. This is one of the hardest things to avoid in everyday life as a lot of processed foods have onions or onion powder in them, and most restaurants use onions extensively in their cooking. Other vegetables to avoid are garlic, asparagus, sugar snap peas, legumes and lentils.

A few of the fruits to be avoided are apple, pear, watermelon and peaches. You also need to avoid chicory, inulin and pistachio nuts. Testing has just been done on other nuts and it’s advised that they are eaten in very small amounts, ie: no more than 12.

The whole list of alloweds and avoids is too long to go into here, but a good starting point is to visit http://dietsolutions.net.au

Sophie: Do you think that other IBS sufferers should try FODMAPs?

Bernadette: I would strongly recommend this diet to all IBS sufferers. As a support group leader I constantly tell our members that ‘individual tolerance’ is always to be assessed when eating anything, even allowed foods. The quantity of ‘allowed’ foods is an issue for people with FODMAP sensitivity.

We cannot necessarily eat a large amount of ‘allowed’ foods, ie: you might manage to eat six blueberries but seven might take you over your individual tolerance level, so you have to learn what that level is with all food by experimentation. And as all IBS sufferers know, some days you can get away with eating things that you suspect you react to and some days you can’t.

Sophie: Thanks for your help!

Bernadette: I hope this helps some of you. I know how awful it is to be in pain day after day and not have any answers. The low FODMAP diet is worth a go.

The FODMAPs diet seems to be the latest craze for IBS and IBD sufferers. FODMAPs stands for Fermentable Oligo-, Di- and Mono-saccharides and Polyols; short-chain carbohydrates for us lay people. The basic idea is that because these carbs are not very well absorbed in the small intestine they are prime candidates for fermentation, and that’s not what you want happening in the depths of your gut.

The fermentation occurs when the bacteria in the colon fall on these lovely FODMAP carbs with undisguised glee. That leads to more gas and more water in the digestive system, and that causes intestinal distension and all of the horrible IBS symptoms we know so well.

The acronym was coined by researchers in Australia who are now conducting further studies, so it’s certainly a diet that’s come from a good scientific source. The researchers have measured the level of water in the intestines by using patients with ileostomies and gas production is measured by the good old hydrogen breath test made famous by Dr Mark Pimentel and his small intestinal bacteria overgrowth theory.

So what do you eat on the diet? Well, unfortunately there’s a whole heap of foods that are high in FODMAPs, including apples, wheat, milk, onions and peas. On the bright side, meat, fish and dairy are all suitable for a low FODMAPs diet, as are a range of other fruits and veg.

Looking at the lists of high and low FODMAPs foods I think the main thing to remember is that this is a very specific diet – you can’t just cut out all dairy foods and be done with it, you need to find out exactly which fruits are OK, which veggies are OK, and so on. But then going dairy-free or gluten-free isn’t a walk in the park either, so maybe it would be worth a try.

I’m hoping to find an IBS sufferer who’s tried the FODMAPs approach to interview for the site – if that sounds like you then please get in touch! Doesn’t matter if it was successful for you or not, I’d like to hear all experiences.