On July 11th this year I was diagnosed with Bile Acid Malabsorption: here’s a little bit about it and how this diagnosis has changed my life and miraculously almost cured me of IBS.
So if you’ve read any of my health history or kept up with my monthly health updates, you will know that for years and years and years, since I was a teenager probably, I have suffered with diarrhoea and after test after test after test the only diagnosis I have ever been given is IBS.
And as you will know if you’re a follower of this blog, I have attempted to ‘fix’ my ibs, as well as a number of my other health issues, with the adoption of a strictly gluten and dairy free diet.
Bile acid malabsorption or BAM for short, is a condition in which bile acids are not properly processed within the digestive system, resulting in symptoms of chronic diarrhea.
To best understand BAM, it helps to understand how digestion is supposed to work. Bile acids are substances produced by our livers and stored in our gallbladders. Your gallbladder is responsible for releasing bile acids into the small intestine for the digestion of fats. When BAM is present, these acids are not well absorbed and therefore excessive amounts are flushed into the large intestine. The effect of bile acids on the large intestine is an increase fluid production, resulting in watery stools and a speeding up of intestinal motility, both of which result in symptoms of diarrhoea. Lovely.
Just to reiterate something: “Your gallbladder is responsible for releasing bile acids into the small intestine for the digestion of fats.” FATS. It was never gluten that I was intolerant too. It was never dairy that I was intolerant to. It was FAT. Which of course now makes SO much more sense and explains why, no matter how many food diaries I kept, I could never work out any specific trigger foods. I ended up just excluding the main two possible culprits and feeling like I had to live like that forever. So where do you find the most fat in food? Dairy of course, cheese, ice cream, milk etc and anything fried like good old fish and chips, or take away food, even roast dinners. Anything high in fat was my culprit and I never in a million years would have realised that.
There are a few reasons why you might have BAM including Crohn’s disease, Coeliac disease, gastrointestinal surgery or various other complex gastrointestinal diseases but I have none of those apparently. I just have primary, unexplained, no cause or reason behind it, BAM. Weird.
But here’s the good thing and reason why when I was told about my diagnosis by my specialist I actually laughed with sheer happiness – there’s a medicine that can fix me!!! Hooray and about bloody time!!!
Yes it means I possibly have to take yet another (as well as my lifelong thyroid meds) pill for the rest of my life but yes I am totally happy, in fact seriously excited and relieved, to take it.
It’s called Cholestagel and it’s made up from 625mg Colesevelam. It’s a medication primarily prescribed to lower cholesterol, however because of its effects on bile acid it it sometimes prescribed as a treatment for chronic cases of diarrhoea. It is classified as a bile acid binder or sequestrant. It works by attaching itself to bile acids within the digestive tract so that they pass from the body. The medication reduces the action of bile acids in the large intestine, which has the effect of reducing diarrhoea symptoms.
There are a few side effects including lack of absorption of vitamins and minerals so my specialist has advised me to take a daily multi vitamin and will blood test me regularly to check levels. I am continuing to take my vitamin B supplement anyway and my other supplements that I take to help support my thyroid function.
But you know what I think is kind of amazing, statistically between 25-30% of patients diagnosed with IBS probably have BAM but remain undiagnosed. How did I succeed in getting a diagnosis then when so many poorly other people haven’t?
Dozens and dozens of trips to my gp armed with research and a bucket load of determination and patience. Demanding tests for lactose intolerance, coeliac disease, gerd, sibo, bacterial infections, food allergies and lastly finding a small amount of information on the web about something called a SeHCAT test which my dietician mentioned to me over a year ago. Having tried all sorts of different dietary control methods under the advice of this dietician, she was the first and only person to ever mention BAM and recommend I take the test for it.
A SeHCAT scan involves 2 scans one week apart, you swallow a tablet which has bile acids in it and then the acids are measured at each scan. The percentage of acids remaining gives an indication as to whether the patient has the condition or not. The typical range is above 15% = Normal, below 15% = signals excessive bile acid loss. My result was 7%.
Over a year later and having eventually persuaded my gp to refer me back to a specialist, I take the test and it is POSITIVE.
To be honest, you get used to these things, the constant trips to the doctors or the hospital, spending time researching and reading random chat group feeds about weird and wonderful syndromes and diseases and health issues. You get used to the running to the loo, to the painful cramps, to the other embarrassing symptoms as being part of your life. You begin to restrict your diet more and more trying to work out what it is that triggers you. I really had gotten used to it. How sad is that? But god it was depressing.
And now…..now I have an actual reason for it. An actual medical diagnosis. And an actual medicine to take that is fixing me. And so far so good….I have been on the meds for 3 months and I am feeling great!
I have essentially reintroduced both gluten and most dairy produce and although I try to keep it in moderation I am basically eating ‘normally’ again. I don’t actually worry to much about eating a low-fat diet because apparently the medication is so good that my specialist said I shouldn’t have to exclude anything at all. But I have to admit that if I know I’m going out for a fancy dinner or heading to the chippy then I do take another tablet just in case! But it’s lovely to know that I can do that.
No more tummy ache, no emergency loo trips, no grumbling or bubbling acid, no cramps….no nothing. I am going only once a day (tmi sorry!) which for me is a serious triumph and everything seems a lot more how it should be.
I am still eating a lot of gluten and dairy free food because I don’t want to over indulge and screw up system up again, so for the time being I am happily continuing to blog gdfree recipes to share with you guys, whatever the reason that you are eating free-from I am still here to help and support you.
Please share this post with anyone you might know what suffers with unexplained ibs like I have for so many years. I hope my experience might be helpful to others and it just goes to show that you don’t have to suffer in silence, you may well be one of the 25-30% of people who have BAM as I do. There is hope!
PS: for those who are interested in the technical medical details of this condition this is a link to an amazing article chocka full of interesting info: