I have Bile Acid Malabsorption…

So lovely readers I have news I have news I have news ahhhhhhhhhh I have been diagnosed with something which has a really cool name: Bile acid malabsorption or BAM. I have BAM! Dun dun DUNNNNNN.

I know….you’re falling off your chair as you read this right? Or not maybe? Bile acid malabsorption, what the heck is that???

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.

Well…..things might be about to change. I know…….WOW right?

So – 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.

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 today 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.

The medication is 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. Hallelujah!

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 already on a vitamin B supplement anyway and he has recommended I can continue taking that as well as the various other supplements that I already take to compliment my thyroid regime. I have to make sure to take this new medication at a different time of day as my other meds though which means I am gonna have to completely rethink my medication and supplement regime so I get the best effect out of everything.

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. A-bloody-mazing.

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 it going to fix me. I can’t bloody believe it!

Oh and you know what, I forgot to tell you the most exciting part of all of this: I can start to eat cheese again!!!!!!! Seriously!!! I know! My specialist said since I definitely didn’t have lactose intolerance (I did the 4 hour long hydrogen breath test last sat morning) that the reason I have always suffered with my ibs so badly after dairy products is the fat in them and not the lactose. So I can probably already tolerate low fat yogurts, skimmed milk and the lowest fat cheeses but once this medication begins to kick in I ought to be able to go back to an entirely normal dairy intake. If I want.

I have to say, I couldn’t go back to drinking milk full stop, the smell of it now just turns my stomach. But at least I know I could have a drop in my tea if there was no other option. At home I’m more than happy with my almond milk so I’m going to stick with that. And we all like the new dairy free spread that I now buy but it’s good to know that I can bake again with proper butter, which as we all know makes cake taste so damn good!

But then there’s cheese…..if you’ve read enough of my blog posts you will know that I’ve spent the past 6 months trialling cheese free sauces till kingdom comes. And I make a pretty good one. And it’s not a bad cheese free alternative if that’s what you need to have. But to be completely honest with you, if I don’t NEED to have it, if I don’t NEED to deprive myself, then you know what – I’m gonna be eating cheese again soon! I have totally missed a rich strong mature cheddar, there’s nothing like it, and a gooey cheesy pizza, yes please. Yup yup yup. I’m excited about the cheese thing. Yes I am.

Oh and chocolate. mmmmmmm chocolate. Dairy milk, full of fat, totally bad for you and totally yummy and I’ve totally missed it. Ahhhhh chocolate, you will be welcome back indeed!

So watch this space guys….I’m going to slowly try reintroducing some dairy into my cooking and baking once the medication has taken effect and I’ll let you know how I’m doing. For the time being I am going to stick with being gluten free although my specialist advised I could probably start to reintroduce a little bit and see how if effects me. Ultimately because of my thyroid disease it might be a good decision to remain gluten free anyway but I’ll see how I feel about once I have settled down with the new medication.

So wish me luck! 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. I hope it’s going to be a positive change for me and not another let down. I hope I’m going to feel better. I hope. Fingers crossed.

6 thoughts on “I have Bile Acid Malabsorption…

    1. Hi there, thanks for your question. My symptoms were very similar to ibs with constant stomach cramps, feeling nauseous and running to the loo after most meals. At my worst I would say a dozen times a day…not much fun. If you’re struggling in a similar way speak to your gp and BAM and ask for the Sehcat test to confirm. Any more questions just ask, Abi

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  1. Hey, I really enjoyed your blog. It’s nice to hear someone else who complete understand what its like to have IBS-D (Or in your case, not anymore! congrats!)

    I too have suffered from terrible IBS-D for a large majority of my life. I’ve been fighting, basically the same way you have to find what could be causing these God awful problems. I’ve tried multiple diets (Low fodmap, elimination, gluten free, vegetarian, elemental) but had no success, with some times making symptoms worse.

    I know my triggers food wise, which seem to include alcohol, sugar, caffeine, all fruits & vegatables & basically all carbs, proteins and fats…. but apart from that I’m just fine! triggers also include stress and lack of sleep.

    Anyway, I’ve done detailed investigation, as you have, blood test, stool, colonoscopy, allergy, SIBO and so on, everything has always come back as negative.

    I’m now investigating BAM as I discovered it could be a possible problem about a month ago. My GP has referred me to the Gastro & it sounds like they are going to consider sending me for a SEHCAT test. I’m praying that I get sent for a scan & it comes back as positive. I probably celebrate if I found our I had BAM!

    I appreciate it’s been a while since you wrote this blog, but I wanted to comment as your journey sounds so similar to my own. How have you found things since you were diagnosed with BAM?

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    1. Hi Billy, it’s really nice to hear from you! You’re right I haven’t written on the blog for a while because my diagnosis, and the medication I am now on, has basically fixed me! Hooray! But the whole point of leaving the blog existing was for people like you to find it and to hopefully be able to use it as a resource for information and recipes. I’m very glad that you did! Gosh, I really really hope for your sake that you are successfully diagnosed with BAM. It sounds like you might be. It’s such a tricky diagnosis but if you’re anywhere on the malabsorption spectrum then at least you’ll know for sure what is triggering your problems. I thought I had all of those food intolerances too but once I forgot about every other exclusion diet I had been on and just stuck to low fat it eventually sorted everything out. The medication works amazingly well for me although I have to up and down my dose if I’m having a bad day, which does still happen occasionally. But I know some people don’t tolerate it very well. I hope, if you get a BAM diagnosis, that the covelesam tablets sort you out like they have done for me. It’s such a horrible and debilitating condition to live with. For more info head to the bam patients charity facebook page, lots of people looking for answers and giving answers which should help you in the meantime. Good luck, and thanks again for your message! Love Abi x

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  2. Hi Abi,
    I am in the U.S., and have also been diagnosed with BAM though not through a SEHCAT scan because the U.S. does not offer that. I was diagnosed by taking a trial of the colesevalem, and it worked immediately. I have taken it for a little over 18 months with GREAT results, and then in the last two months, I have started to have attacks. I’ve had four attacks in the last two months. Three of those were within a day or so after eating lettuce, and the fourth was after eating shrimp; both of these foods are not “normal” foods for me. I was curious if you still notice any trigger foods that give you your bad days as you mention even though the colesevalem usually works pretty well for you.

    Thanks!

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    1. Hi Kerri, oh gosh YES all the time!! When I say the meds work well me for me I mean compared to bring on no meds at all, when I was sick all the time….now it’s just occasionally but when it happens it still knocks me out badly. When I know I’m eating my trigger foods (cheese mostly or eating out or take away types of foods) at least i can be prepared for it, I double my meds and I know to expect symptoms, but I still get flare ups out of the blue. I had one on holiday recently that ruined a couple of days for me just from eating Thai food. I often think it’s the method of cooking rather than the food itself so perhaps too much oil, the wrong kind of oil, deep frying etc. I know a lot of BAM sufferers have symptoms from salad but I always assume it’s the oil in the salad dressing that triggers it rather than the salad itself but I may be wrong. And seafood has always been a trigger for me, I was convinced I had an allergy to it until my tests were negative. I think with BAM you’ll always be super sensitive to difficult foods anyway and I think of seafood as a risky one. You’re lucky though to have a diagnosis just from being trialed on the meds, they won’t do that here so we really have to fight to get tested but at least we have access to the test I guess, swings and roundabouts! It’s a pretty rubbish condition to live with but as long as you can get a handle on managing your symptoms I’m sure you’ll be fine. Thanks so much for messaging, its great to know people can find my blog and find the info in it helpful. Take care, Abi x

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