does anyone have any advice on maintaining levels of fat soluble vitamins. I suspect I am not making enough bile -hence poor digestion. dietician suspects bile acid malabsorption. I cannot digest fat well and dietician told me to go on high carb high protein diet with protein intake between meals to rebuild weight. My B12 was low but now getting 3 monthly B12 injections.
what about Vitamin A, B6, E and K ? I believe they too are fat soluble. I presume those too would be low.
do vitamin supplements in tablet form work ? Or do I need to look at other ways to boost those vitamins.
I have lost a lot of weight 12% (down to 58kg and 5’11” male). and notice as well as the fat layer gone my chest muscles feel week. (My legs and arms are ok from walking cycling and swimming). I have low creatine levels. (61 at Bottom end of the range)
Thanks.
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Shoe2
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Hi I have liver fibrosis and bile acid malabsorption. Read the bad-uk.org website for info on condition. Bam is caused by bile not being reabsorbed back through the body and re-used, it reaches the colon and then it’s flushed out. Foods that need more bile to digest are fats, leaves, skins and seeds. So under 40g a day of fat and avoid salad! Make sure veg is well cooked and avoid anything with skins/seeds. I’m good with white carbs, chicken, fish, cooked veg. Citrus fruits also a nightmare. I have banana on toast for breakfast, sandwich or soup for lunch, chicken/fish with carb and veg. Anyway, to confirm bam is by having a sehcat scan. I take colesevelam tablets which are prescribed off licence by Gastro consultant as they are a bile sequestrant. This means they bind my bile rather than it reaching the colon and being flushed out eg diarrhoea. I take 4 in one dose at 6pm on an empty stomach. I have to leave a gap of 4 hours either side of these tablets. So I take other meds on waking, with breakfast and lunch, leave gap to take binder at 6pm. I eat at 7pm and have nighttime meds at 10pm. I have a list of vitamins to take so I take this with breakfast and lunch giving them time to absorb and work. Some of those mentioned you can buy separately, I take K2. I’m prescribed omacor (omega as my good cholesterol is low) and vitamin d. I have b12 injections. Advised to take other vitamins as well so I take vitamin C, Zinc, magnesium, folic, iron, collagen, biotin and prob a few more I can’t remember off hand. Prof Julian walters is an expert on bile acid malabsorption and has done you tube videos and a podcast on Spotify about it. Crazy that more people suffer from this condition than crohns and colitis put together and yet hardly anyone has heard of it. Mine started in pregnancy was I was 27. I’m 55 now. My liver issues were found when I was late 30s but my malabsorption wasn’t diagnosed until I was 48 as I was just told it was IBS which I knew it wasn’t. Luckily on meds for it and have a life rather than everything going through me! Hope that helps in some way.
Many Thanks for the detailed reply and taking the time to do so.
Lots for me to follow up on.
I saw a Gastro consultant who thought maybe chronic pancreatitis but ruled that out with blood tests and faecal elastase test and CT scan. Concluded probably bloating dominant IBS. Referred me to dietician who suggested the BAM and referred me back with recommendation for a sehCat which I need to follow up with the consultant to see if they will arrange this.
Good to know that sequestrant work for you with liver fibrosis. I was worried if I have any level of fibrosis that would raise bilirubin levels.
I eat lots of whole foods and leafy and steamed veg and salads so thanks for the comments on that. I will try adjusting how I cook to see if that also helps.
I will see if the dietician can arrange vitamin deficiency tests also as don’t want to start taking extra supplements without good reason and a plan. Though I have been taking E, D, fish oil and was taking K2 for a while.
Again thanks for the other links for BAM groups and Prof Walters. I will follow up on those.
You're welcome. Only a sehcat will show bam, I've had so many bloods, stools, colonoscopy with biopsies to make sure nothing else was going on. It really is a minefield, and I've had to research on it all. There are also a couple of groups on facebook if you're on that.
Thanks. I noted you said you have liver fibrosis. Just wondered how that was diagnosed with you? Bloods or scan or presumably both. But what type of scan ? Ultrasound, CT, MRI, MRE, Fibroscan ? Thanks.
I was diagnosed with nafld in my 30s and despite being slim and eating low fat diet, last year it progressed to fibrosis/borderline cirrhosis. Originally found in blood tests, my ALT was over 200 and my GGT and triglycerides were v high. Had an ultrasound to confirm followed by a fibroscan to check. Was put on statins, and later on BP meds. Been regularly monitored over the years with bloods and scans and my ALT was stable at around 85 for many years, like wise the other tests, high but stable. Last year it jumped up to 120 again despite nothing else changing. So they did a fib-4 and elf blood test which was showing signs of fibrosis so I was referred back to consultant and had fibroscan scan which confirmed Kpa 12.7 and cap 224. Which for a fatty liver is fibrosis, it’s different levels depending on your condition. If it’s due to alcohol I think the kpa is something like 18 before it’s fibrosis (but don’t quote me on that!) I’m supposed to see the consultant and have a fibroscan yearly now but they’re behind with appointments and have gone over the year.
I would ask for some more tests to find out what is going on. If you are having B12 injections, ask your GP for an Intrinsic Factor Anti Bodies (IFAB) test which will tell you whether you have Pernicious Anaemia (PA); the test is not accurate in that it often reports false negatives but it does not report false positives. If you have PA, you might have low stomach acid which typically leads to diarrhoea. Low stomach acid is detected by a serum gastrin blood test.
Regarding BAM, you will need to get a SehCAT test which requires a referral to a gastroenterologist. A SehCAT scan is a 2 stage test; you swallow a radio labelled bile acid capsule and have an initial scan which takes about 10 minutes; a week later you have a follow up scan which determines how much radio labelled bile acid is retained in the small intestines; the smaller the percentage of bile acid remaining, the more severe your BAM is. Basically bile acid is seeping into the large intestine and this typically results in urgent and frequent diarrhoea; the stool is sometimes pale and oily.
BAM appears to be associated with low levels of B12 but I'm not sure that it affects fat soluble vitamins; the treatment for BAM (bile acid binders) does affect absorption of fat soluble vitamins.
There's also another condition called Pancreatic Exocrine Insufficiency where the pancreas does not generate enough lipase and other enzymes and you end up with Vitamin deficiencies (typically Vit D deficiency). This is diagnosed via a stool test called the Faecal elastase test or via a serum lipase blood test. Again GPs cannot authorise these tests.
Before embarking on Vitamin supplementation, perhaps try and get some of these tests. Your dietitian should also be able to request Vit A, D, E and K tests.
The key thing is your symptoms. Low B12 is associated with severe fatigue. Low stomach acid associated with PA results in diarrhoea; BAM also results in diarrhoea.
There's a HealtUnlocked group for Pernicious Anaemia where you can discuss B12 issues at length with people who understand the disease at first hand. There's a patient support group for BAM (bad-uk.org) which has a Facebook group.
This group often discusses NAFLD (hepatic steatosis) which is closely associated with BAM. Too much fat in the enterohepatic system appears to increase the body's ability to absorb some of the fat soluble vitamins like Vit E. A dietitian who correctly thought I had BAM arranged some Vitamin tests and my Vit E level was 51.1 which is well above the reference range of 9.5 to 41.5.
It's all incredibly complicated and confusing. These diseases appear to be subtly connected. It's thought by some that NAFLD is caused by low B12 and that the cure is Vit B12.
I'm hoping that ChatGPT is going to unravel the mysteries of these interconnected conditions.
Many Thanks that is helpful. Thanks for taking the time for a extensive reply. Dietician has recommended to Gastro consultant to arrange a SehCat test - I need to arrange a consultation to pursue that. And I will ask dietician about Vit def. tests.
I had Fecal Elastase test. Came back normal. So dont think it is chronic pancreatitis A CT scan said pancreas liver gall bladder and bile ducts normal
Also had intrinsic factor antibody again normal but I will request again as had not realised can get false negatives. I am fatigued and have been for 10 months. Though not full watery diarrhoea I had fatty runny pale and yellow form mainly improved with low fat (below 40g per day) diet
I don’t think I would have NAFLD but potential ARLD as used to drink too much but been abstinent now for 10 months.
The fatigue might well mean PA. GPs tend to think you can diagnose PA via Full Blood Count because of the word anaemia in the phrase Pernicious Anaemia; this is a mistake discussed at length in the PA's forum. Unfortunately because the IFAB test is inaccurate, PA is very hard to diagnose. There used to be a test called the Schilling test which works on similar principles to the SehCAT test but it was withdrawn - it was quite laborious. The Serum gastrin test is now considered a good way to test for PA but I'm not sure the NICE guidelines on B12 which are currently being redrafted will include this.
The pale and yellow diarrhoea does indicate BAM - do you have urgent diarrhoea (which indicates bile acid in the colon where it should not be present)?
>I had Fecal Elastase test. Came back normal.
Beware of the word "normal"; the bottom of the range is faecal Elastase range is 200 but some believe that if the result is less than 300, it should be regularly checked. NHS reference ranges are generally not constructed with controlled populations so they are an approximation; you cannot use terms like "normal" distribution unless the population used to create the reference range is controlled. If you are low in a reference range constructed without a controlled population, that is significant.
My B12 levels were 201 ng/L in a reference range of 197 to 711 ng/L. I was fobbed off with that being normal until the SehCAT result came back. A controlled population for B12 tests would exclude everyone who had untreated PA or the other conditions that lead to low B12 (like BAM) and at the high end should exclude people who are having B12 injections - such people would skew the reference range and that's probably why the reference range is so huge. It's expensive to get accurate reference ranges. Vit D ranges are probably more accurate and that's because of the many NIHR funded studies at Newcastle University.
It's quite possible to have BAM with PA or BAM without PA or PA without BAM. Nobody knows what triggers the auto immune response resulting in IFAB; it may be low levels of B12 that trigger the response.
Ask some questions on the PA forum; there's a subtle link between B12 and B9 (Folate) deficiency and the order in which they need to be treated. There's a bunch of other tests like MMA and HomoCysteine which should be done to get a complete picture of what's going on. I don't understand the complexities but the people in the PA forum do.
Synnovis at Guys' hospital offer an affordable set of comprehensive B12 tests including the Active B12 test which is generally not available elsewhere:
Thanks for reply. My B12 was 196 (1 below the range). Online suggested anything below 300 should be further investigated. GP initially said no it’s fine. I pushed for the MMA which came back high (665). Only then did GP AGREE ON B12 injections. So yes I appreciate the ‘ranges’ are very catch all and not an absolute by any means. My faecal elastase those showed up as >800 so feel comfortable that is not in a grey zone. I am going to read up in the PA forum too and follow up to get the SehCat scan. Thanks.
In your post "confused about what I have - is it my liver (or pancreas) or something else" you list a set of symptoms:
" I have had awful symptoms since end Jan this year of abdominal pain upper right, very pale fatty gassy stools, bloating, itchy skin on arms legs and stomach, initially insatiable thirst, shortness of breath, now little spidery veins appearing on side of ribs (not with a clear red centre), lower back ache and pain in my shoulders, fatigue and general malaise, and lots of small varicose veins appearing on ankles and legs. I feel like my circulation is poor, I had had tingling in thumbs, cold and numb fingers and feet when it is not that cold, bloodshot eyes."
"insatiable thirst", "fatigue and general malaise", "tingling in thumbs," are all symptoms discussed at length in the PA forum.
There are many posts that discuss fatigue. Here's one:
liver disease and spider veins can be linked. A symptom like fatigue is associated with many diseases such as thyroid disease, B12 deficiency and pernicious anaemia as well as liver diseases; hepatitis and haemochromatosis can both be associated with fatigue - in the latter case ferritin levels are often elevated.
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