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Bile Acid Malabsorption - who all has this problem?
Is anyone out there on bile acid sequestrants for bile acid malabsorption? I had severe, chronic diarrhea for over 15 years (starting after my cholecystectomy) until after IBS diagnoses, several colonoscopies and other GI studies, I finally told a new GI provider that I'd had enough of living my life around going to the bathroom. He prescribed colestid, and my life has drastically improved. Just like that.
At first, I was relieved. When I went for my annual physical at a Duke Health clinic recently, I was eager to say my new diagnosis of bile acid malabsorption. The nurse asked me to repeat it. She searched a bit more. Asked me again. She couldn't find such a diagnosis. My relief has turned into frustration. Why is this seemingly common problem that can SO easily be treated overlooked? After a sleepless night, I tried looking online for more info about it from Duke. I found a study from the 80s. So then I tried the Merck Manual. Nothing. In the UK, it's completely recognized as a disease and even qualifies as a disability. NIH has many studies performed by scientists in other countries showing this issue is most likely much more common with people being incorrectly diagnosed with IBS and IBD. It seems only the Mayo Clinic recognizes this disease. I want to know who all is out there with this problem? A support group for this in the US could be so immensely helpful.
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@choosejoy I did have this test and it was w ithin normal range. Thanks for the suggestion.
I have had diarrhea at various levels since I had my large intestine removed 3 years ago because I had a blockage, malrotation, and diverticulitis. I take 4 colestipols and 4 citrucils a day plus 4 or 5 pepto pills with some success. I have now diagnosed with ulcerative colitis; I did have some blood for a while. It seems that my anastomosis has some large intestine in it. To me that whatever is going on with me is a moving target.
@pepperk yes I take tablets, 2 in AM, 4 in PM
@beebe I was prescribed Cholestyramine and ended up going off of it because I realized it was a trigger. Found out later that it was probably due to the sucrose in the lemon-flavored one. (I discovered that I have developed acquired sucrose isomaltase syndrome (ASID) among other things such as SIBO) So, I replaced it with acacia fiber. I used to take the fiber twice a day and started noticing the morning drink was acting more like a laxative. Since I was diagnosed with bile acid malabsorption I didn't want to encourage anything to travel right through as I had been losing weight. However, it appears to be working for me with just one application at night (3 tsp) and somehow my body is learning how to heal itself. It appears as though I no longer have the bile acid malabsorption and the acacia fiber is regulating my system, blood sugar, weight etc. Things have gotten better since I quit taking the cholestyramine which I'm happy about especially because I found out after doing a deep dive that it can cause cancer of the liver due to the aspartame in it which is actually not even listed on the label. Helps to do research.
@jeepgrl
Like you I am sensitive to artificial sweeteners so had a compounding pharmacy make me straight Cholestryamine with no sweeteners or additives. I have tried acacia fiber and found it gives me bloating at a very small dose. Since quitting the Cholestryamine, I have been able to add pysillium husk to my diet and it has helped really firm things up. The dose for my sensitive gut is 3/4tsp taken 3x/day at meals. I tried a 1 tsp dose and found it bothered my stomach so lowered it down to 3/4tsp.
Lately, I am adding in a little ground flaxseed to my meals to see if I tolerate it (my dose on that is only 1 tsp, 2x/day with meals); I will sit on that dose for a week and see how my gut responds before increasing it. You have reminded me of acacia fiber, think I have some sitting in the cupboard, and will try it again if the flaxseed does not pan out. I am trying to work more fiber into my gut to feed my microbiome and help with blood sugar too.
I am glad to hear that you got over the bile acid malabsorption, I think I am done with it too and plan on never take a bile acid sequestrant again!
Awesome. Yeah, we need to listen to our bodies. I've thought of trying the pysillium husk. Also, I have some flaxseed hanging around and have been meaning to try that as well. Another thing I can try is a different type of probiotic which, someone mentioned, firmed up their stool. We just have to keep trying. Currently, I'm taking zinc L. carnosine which appears to be helping. Best of luck to you!!!
Most recently after taking two kinds of antibiotics for both forms of SIBO I was told that I might have Bile Acid Diarrhea. Working on this assumption, diet is: no dairy, no fried or high-fat foods, no alcohol, no processed meats (bacon/sausage), no high sugar foods and careful with spicy foods. Otherwise encouraged to eat things (veggies/fruits) in the more normal diet. Stating that fiber helps retain and slows down the digestion process. I am requesting from my primary care doctor that all minerals/vitamins be a part of my blood work this time so I'm not guessing what I need to take. Despite the use of electrolytes and plenty of water the legs cramps have been severe. I had a record of 6 days without "an accident". But 6 simple French fries (yes, I was counting) started things in the downward direction. Now I'm just working with this body to reverse course and get back on track.
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1 Reaction@beebe I know this is an old post so not sure if you’ll see it but here goes. Currently taking 3 tsp at bedtime. It appeared as though it was acting like more of a laxative in the morning so I eliminated that and it’s been better. It also seems as though my body has been clearing out the bile acid malabsorption on its own since I’ve been gaining weight. I do have other issues I’m dealing with since I’ve acquired ASID (acquired sucrose isomaltase deficiency syndrome). Just something else added to the pot to work on and deal with so I have to take digestive enzymes from time to time. Oh well. At least I’ve got some things under control. Lots of luck to you!
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1 ReactionA few years ago, after having my gall bladder removed, I was having trouble with diarrhea, and a doctor put me on colestipol. I started on the pills, which were too hard to swallow, so am now on the granulated form. It has changed my life! I mix the colestipol into either V-8 Deliciously Green or their Blueberry Pomegranate juice, and mix a little diet soda in there. The granules do not dissolve, but the thicker juice makes the concoction quite tolerable.
@jeepgrl
Hopefully you heal with time and get rid of the ASID. I am impressed that you actually got a diagnosis, most of the Doctors I have seen have not been too helpful with my digestion until I saw an Integrative Doctor. The gastroenterologists have seen had zero helpful hints and did not offer any testing to see what is going on. They just seem to be interested in focusing on colonoscopies!