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Bile Acid Malabsorption
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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Eggshell calcium?
Yes, instead of taking calcium citrate for my calcium I take eggshell calcium made from eggs I eat or you can purchase it from Swanson vitamins. https://www.swansonvitamins.com/p/swanson-ultra-eggshell-calcium-vitamin-d3-120-caps
Here is a link if you want to make your own and try it. I always use organic eggs as they have thicker shells and I a higher mineral content (my guess that is why they are harder).
https://www.peteandgerrys.com/blogs/field-notes/diy-eggshell-calcium-powder
Hi,
My heart goes out to you. I had a kidney transplant three years ago Dec 2024. In spring 2024 Came down with covid which last about three month. Then a month worth of kidney rejection of which I was treat for with IVG infusion. THen from no where I started to loose my bowels. PA's and Doctors believed ( not sure it was as a result of covid and all the anti rejection medication I am taking. THe loose bowels went on for months until I was prescribe Entera Gam
an the cholestyramine. This saved my life. I fine it disparaging that the gastro surgeon never mention this condition which I later learned happens to some people post gallbladder surgery..
Medicare does not cover Entera Gam as is not consider a drug , IT is serum derived bovine immunoglobulin/protein isolate with 5 gram of dextrose /glucose & trace of sunflowe lecithin,,
Both are pretty expensive. I continued to research and found several vitamin company which also sell this bovine powder. IT appears I will be taking this for life. If it keep my kidney transplant in good health, it will be worth it. I am calling my medicare rep to see if I can possible have the Cholestyramine cover. IT's worth a try, Good Luck. Additionally, Food choices are vey strict for me today. Good Luck
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1 ReactionAnyone got any tips on getting more control over the urgency? When I feel like I have to go to the bathroom I have about 30 seconds to get there or else. Anything mental I can do?
@jeepgrl I'd love to hear more about putting the powder in the capsules. I was told by doctor that it wouldn't work because it works as it travels to your stomach. Do you drink a lot of water after doing it? Also, what's the clothespin trick? Do you get your gel pills on Amazon?
@hounddog26 Your doctor is wrong Cholestryamine works great when in capsule form, at least it did for me and yes drink 12 oz of water when swallowing the pills, you do not want a pill to get stuck in your throat. You could also swallow a pill with food, chew your food and slip a capsule in your mouth before you swallow, that works really well for me. I will let Jeepgrl explain the capsule filling process, I purchased my gel caps from iherb.com, there are a lot of different sized gel caps so you need to figure out how much powder you need to encapsulate and how many gel caps it will take. Jeepgrl might have that figured out for you too:) Best of luck!
I was told by a consultant that I had IBS approx 20 yrs ago.My consultant that I have for past 8 yrs.thinks that my problems may be caused ny Bile malabsorption.He did not do any tests,not great at organising tests except endoscopies and colonoscopies but I am pleased that he has come up with this diagnosis.I feel that he is correct as some of the discomfort that I feel is similar to the pain that I had before I had my Gallbladder removed.I have read that the Bile can be drained but do not know if this is a severe procedure.
@cardigan
The Serum C4 blood test can be done to make sure you have bile acid malabsorption instead of just assuming it; there is also a Fecal BA test. Are you supplementing with something like OX bile to help digest your fats now that your gall bladder is gone?
Thanks very much for that advice Beebe.I will mention it to my Gastroenterologist when I see him during the year.I do not know why he did not order it but he is very bad at ordering tests.
I’m on Welchol/colesevam (sp) for Bile acid malabsorption . Had whipple and have so may issues from it the docs told me they never seen a cas like mine- though bile acid malabsorption is no longer an issue with this medication . It was my Sloan Kettering nutritionist who diagnosed me…and told me to ask my Sloan Kettering gastro for medication.