Idiopathic Bile Salt Malabsorption - Diagnosis

[Pebble]

I have finally got a diagnosis which explains the B12 deficiency, and thought I would share it with others as it seems Drs don't consider it very often (unless someone has had their gallbladder removed).

I have had a very bad stomach for years now - diarrhoea every day. When I became B12 and folate deficient earlier this year, I went for a gastroscopy and colonoscopy in May. Both were clear. I got tested for parietal cell antibodies - all fine. My gastro doc said - it's IBS. I said - ok, so why am I B12 deficient then? Once I had convinced him there was no way it could be dietary, he said he would send me for a SEHCAT scan, which tests whether you reabsorb bile salts. It turned out that I had bile salt malabsorption.

(My understanding is:) Bile salts are meant to be reabsorbed before they reach the intestine. If they aren't, which can be due to gallbladder removal, Crohns, or 'some unknown reason' (like mine), they basically act like a super laxative. They prevent water being absorbed and everything comes out. Bile salts are released everytime you eat.

Recent clinical research has shown that around 33% of patients who have been told they have IBS, actually have bile salt malabsorption. But doctors are only just getting on board with this.

I am starting the med Questran today. There is no cure, but Questran apparently neutralises the salts when they reach the intestine, so they don't act like a laxative. So hopefully no more diarrhoea and no more water soluble vitamin deficiencies.

Anyway, I thought I would mention this to you all, as I know many of us on the site don't get a formal diagnosis. This is a medical journal article: http://bmb.oxfordjournals.org/content/92/1/79.full

However, if you just Google Bile Salt diarrhoea, there is a lot of information available.

[BeeNumber12]

[JDee]

Hi.

I can't comment on the use of this drug etc but I am always wary about side-effects etc.

The following site warns about the drug affecting b12 levels. Just to be aware for future blood tests.

http://www.livestrong.com/article/38424 ... its-risks/

There is another thread where Bile Salt Malabsorption was discussed.

viewtopic.php?f=1&t=12547&p=46882&hilit=bile#p46882

Jac

[Pebble]

Hi Dorothy and Jac

Dorothy: I will certainly let you know how I get on with the Questran. It makes sense that the diarrhoea had been causing the deficiencies, and as this should neutralise the bile acids, hopefully that will stop. I think I possibly have IBS as well as the bile salt problem. Bile salt diarrhoea (possibly TMI here!) is very watery and yellow, with not much abdo pain, urgent, and especially after you have eaten. It can also cause steatorrhea, which I first got several years ago now, and my GP just told me to eat less fat!! Some GPs / gastros apparently trial IBS patients on Questran, and if it works, they informally diagnose bile salt malabsorption. I think until fairly recently it was just considered when someone had had their gallbladder removal.

Jac: Thanks for that. I've just had a look on the net after reading the article you posted. That was the first time I had seen any link with B12 - most of the info says that you can get deficient in fat soluble vitamins when you use Questran (A, K etc), but not water soluble ones. However, after looking, I see that several sites have said it reduces absorption of B12. So it seems I am in a position where my B12/Folate deficiencies are due to bile salt malabsorption, which in turn will be treated with a medication that impairs absorption of B12! Eek!

I'll have to ask my GP / gastro doc about this. I don't think there are any other meds for the condition - and I need to take something as I can go to the loo up to 16 times a day when not taking anything, which leaves me housebound, and then there are the vitamin deficiencies on top of that obvously. I get on ok with Imodium, so I'll ask if that is a viable solution.

[kimks mom]

Hi pebble,

Thank you for posting about your diagnosis. It does give food for thought for anyone who has severe diarrhea and has had their gall bladder removed.

let us know what the gastro says about the use of Questran and B12 absorption.

Regards,
Pat

[Pebble]

Hi everyone. I saw the gastroenterologist today and thought I would feedback.

Basically, it would seem that I have chronic diarrhoea due to three issues: bile salt malabsorption, fast transit time and from taking an SSRI that exacerbates that. The chronic diarrhoea is causing the folate and B12 deficiencies.

I prefer Imodium to Questran, as Questran tastes horrid and makes me bloat. The doc said that if daily Imodium works to stop the diarrhoea it is fine to take that - however it will not stop me losing the vitamins, so I should still get B12 jabs. If I find the Imodium stops working (if the bile salt problem gets worse, for example), I will need to switch to Questran. The problem with Questran (apart from the yucky taste and bloating) is that it binds to the bile acids, as well as other things, such as vitamins - and can cause vitamin deficiencies.

So my understanding is: if you have B12 deficiency due to chronic diarrhoea caused by bile salts malabsorption, you will still need jabs whichever medication you take.

Anyway, hopefully this will help those who have not found a specific cause for their B12 deficiency, who have been fobbed off with the label of IBS.

[BeeNumber12]

[Pebble]

Hi Dorothy - thanks for your comments. I think my GP is sticking to B12 injections every 3 months, and possibly taking the folic acid down to 2.5mg a day. I was tested last week for folate and iron levels - both were good; and my blood count showed that I am no longer macrocytic anaemic.

The facial cysts are back - I think the antibiotic I'm taking has stopped working . The B12 doesn't seem to make much impact on the acne, whether I have a jab or am deficient!

[kimks mom]

Hi Pebble,

I wouldn't be in a hurry to cut back on the folic acid. The only time my daughter gets facial cysts is when she forgets to take the folic acid. She is on 5 mg daily and you would think after 18 years she would remember. She stops all her vitamins when she has a cold or flu and for Kim, it only takes 4 days for the folate anaemia symptoms to show, facial cysts being one of them. Antibiotics do help but as long as Kim takes the folic acid, she doesn't get cysts.

You may find injections once every 3 months are not enough. If you notice getting a lot of symptoms back early then ask your doctor about increasing them.

Regards,
Pat

[anotherwithpa]

Management of chronic diarrhoea due to bile acid malabsorption.

http://www.ncbi.nlm.nih.gov/pubmed/24602022

Systematic review: the management of chronic diarrhoea due to bile acid malabsorption.

Wilcox C1, Turner J, Green J.



Author information

1Cochrane Medical Education Centre, Cardiff University School of Medicine, Cardiff, UK.

Abstract

BACKGROUND:

Bile acid malabsorption (BAM) is a common, yet under-recognised, cause of chronic diarrhoea, with limited guidance available on the appropriate management of patients with BAM.

AIM:

To summarise the evidence supporting different treatments available for patients with bile acid malabsorption, noting their impact on clinical outcomes, tolerability and associated side effects.

METHODS:

A literature search was conducted through PubMed, the Cochrane Database of Systematic Reviews and Scopus. Relevant articles studied patients who had been diagnosed with BAM and were clinically assessed before and after therapy.

RESULTS:

A total of 30 relevant publications (1241 adult patients) were identified, which investigated the clinical response to drugs, including colestyramine, colestipol, colesevelam, aluminium hydroxide and obeticholic acid. The most commonly used diagnostic test of bile acid malabsorption was the SeHCAT test (24 studies). Colestyramine treatment was by far the most studied of these agents, and was successful in 70% of 801 patients (range: 63-100%).

CONCLUSIONS:

Colestyramine and colestipol are generally effective treatments of gastrointestinal symptoms from BAM, but may be poorly tolerated and reduce the bioavailability of co-administered agents. Alternative therapies (including colesevelam and aluminium hydroxide) as well as dietary intervention may also have a role, and the promising results of the first proof-of-concept study of obeticholic acid suggest that its novel approach may have an exciting future in the treatment of this condition. Future trials should employ accurate diagnostic testing and be conducted over longer periods so that the long-term benefits and tolerability of these different approaches can be evaluated.

© 2014 John Wiley & Sons Ltd.

-----------------------------------------

http://www.ncbi.nlm.nih.gov/pubmed/40578

In vitro binding of various biological substances by two hypocholesterolaemic resins. Cholestyramine and colestipol.

Leonard JP, Desager JP, Beckers C, Harvengt C.

Abstract

The ability of cholestyramine and colestipol, two hypocholesterolaemic resins, to bind in vitro several compounds such as vitamin B12, vitamin B12-intrinsic factor complex, folic acid, iron citrate and calcium chloride was investigated. Both resins bound to a high extent vitamin B12-intrinsic factor complex, folic acid and iron citrate; in addition, cholestyramine also caused appreciable binding of calcium. Throughout a large range of pH, there was no change in the binding capacity; however, at pH 2, cholestyramine exhibited a marked drop in the binding of tested substances (with exception of folic acid). By increasing the molarity of the solutions, the binding to the resins of vitamin B12-intrinsic factor complex and of calcium chloride was completely inhibited. In human gastric and duodenal juices, the uptake by the resins of the studied compounds depends on the molarity of the physiological medium tested and partly confirms the results obtained with aqueous solutions. These data obtained in vitro emphasize the necessity of regular monitoring these biochemical parameters during chronic treatment of hypercholesterolaemia conducted with these two resins.

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There is lots more, but just a few to give an idea, Marre

[BeeNumber12]

Marre, does this mean the drugs do not bother b12 at cell levels? Not up to understanding this right now.
~D.

[anotherwithpa]

Hi Dorothy,

That is what I read, it affects IF bound B12, and the recycling of B12 in bile, I think, but not the injected B12, is what I think. Which looks right judging by my latest blood test. It does affect the folic acid, other fat soluable vits and absorption of even calcium it seems, and iron, affecting the PH I think. (But may be wrong, just back from flight to Daughter which had 3 hour delay, arrive home 2.30 AM.)

Marre.

[Pebble]

Hi everyone

I haven't posted for a while, but wanted to revisit this thread as I think I actually provided some misinformation initially. I'm not sure if there is anyway this can be rectified.

When I first found out I had bile salt malabsorption I was grappling to understand how that linked in with the B12 deficiency. I thought that the BS malabsorption was causing diarrhoea, which in turn was preventing the vitamin B12 from being absorbed. However it seems this isn't the mechanism.

When I talked about it further with the doctor it seems the main cause of the problem is 'fast transit' - basically that everything goes through the intestines too quickly (ultimately resulting in diarrhoea), and this means some things are not absorbed well along the way. The poor B12 and bile salt absorption suggests that I have particularly fast transit through the part of the intestine that is meant to absorb these (the terminal ileum). (I had endoscopies which showed I had nothing wrong such as inflammation or Crohn's which also cause poor absorption of B12 and bile salts. I also had no problem with Intrinsic Factor. So these were ruled out).

So the chain goes thus: 'Fast transit' causes B12 and bile salt malabsorption (and also, ultimately, causes diarrhoea); in turn, not absorbing bile salt acids causes another type of diarrhoea. However I was incorrect in saying that the bile salt acid diarrhoea was responsible for stopping B12 being absorbed - it isn't, as the BS diarrhoea happens later on in the intestinal tract. It's a small difference, but I don't like information to be wrong!

The learning for others is basically: vitamin B12 deficiency can be caused by chronic diarrhoea due to IBS / medication side effects (etc.). Whilst you can take medications to slow down the bowel and prevent diarrhoea, such as Imodium for IBS and Questran for bile sale malabsorption diarrhoea, these will not stop the malabsorption problem (and as we have said above, Questran can make malabsorption worse).

I hope that makes sense.

[anotherwithpa]

Hi Pebble,

Just wondering how you are and if you are still using Imodium? I'm asking as I'm on colestipol now for bile salt mal-absorption, and it has helped me a lot!

Kind regards,
Marre

[Pebble]

Hi Marre

I'm glad to hear you're doing well with the Colestipol. Is that tablet (rather than the powder/drink)? Have you encountered any other vitamin deficiencies?

I'm still taking Imodium everyday and it's still working at the moment. I'm withdrawing very very slowly from the anti-depressant that got me into the 'fast transit' mess (and has also led to me having metabolic syndrome). Once I am off of it, hopefully my stomach will be a bit better (although I have always been prone to 'fast transit' just not this fast!) and I might start absorbing some nutrients!