Hi , has anyone here had a seHCAT scan for bile acid malabsorption. Been having bad stomach issues for a while and with back log seeing consultant took ages . In March finally had a consultation and lots of test all clear . Not sure if this is last hope but having seHCAT scan for bile acid malabsorption. I SI twice a week sometimes more , just recently my B12 symptoms have got worst I also have hypothyroidism . Could my stomach issues be causing my symptoms to get worse . I’m so tired again , constant ringing in ears , neuropathy in fingers and toes to name but a few 😞 has anyone on here got bile acid malabsorption problems . Was thinking is it worth SI every day for a short time to see if that helps .
Thanks in advance .
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andepande
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you don’t say what sort of stomach issues you are having. If you are also hypothyroid one of the things that many of us seem to have along with B12 deficiency is SIBO. Did they do a test for that?
I have PA and hypothyroidism. I’ve have very bad diarrhoea going constantly . I’m not good at abbreviations so what is SIDO 🫣 I’ve had CT scan , bloods, endoscopy all clear .
Small Intestine Bacterial Overgrowth - it’s a breath test. I am trying to get one as it could be a cause of my gastro symptoms. It’s a breath test. A consultant (Gastrologist or Dietician can make referral). Try to get three hour test with lactulose as it tests the very end of the small intestine - a two hour test could miss it.
I had the 3-hour lactulose test, and was told "inconclusive" - either SIBO or fast transit (IBS). This was initiated by a haematologist to try to explain why my MMA was raised, despite frequent B12 injections and a diagnosis of functional B12 deficiency.
Because I'd been lucky enough to have seen the same excellent GP throughout (from 2016 onward), she was able to rule out IBS and trialled antibiotics for SIBO to eliminate this as the cause. The antibiotics caused a negative reaction (constant headache and vertigo) but I continued the course. Nothing useful happened so SIBO ruled out by the GP. The diagnosis of functional B12 deficiency remained unchanged as the cause of raised MMA . It took three years of frequent B12 injections for this to change to an in-range MMA result.
Daily diarrhoea was one of my first B12 deficiency symptoms, with lower back and left-side groin pain. Plus, of course, exhaustion ! All of my many symptoms have improved, become less severe or are very rare now. I self inject every fourth day to keep them under control. It is still the case that a delay in injections will mean deterioration.
Diarrhoea as a symptom of B12 deficiency, discussed in all of Martyn Hooper's books, does not necessarily mean that "something else" is going on - but eliminating all other possibilities a good idea: bowel cancer on a 2-wk pathway (the first test I was given), SIBO, Crohn's, Coeliac disease, IBS... an appointment with a dietician and 3 months of FODMAP diet helped me rule out any dietary issues.
You might have already been down this route, but if not, this may take some time.
A relief to eventually be able to reassure yourself that this is "just" B12 deficiency. Then just a matter of working out what frequency will help you. For me, it was EOD for a couple of years before getting to this stage, and I always said "yes" to any test they wanted to do and never altered/cancelled an appointment. Any information may help the next consultant - and there is never a last hope.
Example: My Oral Medicine consultant eliminated my angular cheilitis - split, sore, bleeding mouth especially corners - after decades of a permanent problem. The Miracle Cure ? Nipple cream . It really works - until I either forget/run out and then it returns, exactly the same, within a couple of days. So while not exactly a miracle, near enough for me.
I had a private and was positive for methane SIBO. No NHS hospitals near me do the test. I saw my consultant and have advised but he didn’t want to give antibiotics as I have atrophic gastritis.
If I am positive I won’t be taking antibiotics but following a strict diet to starve the bacteria (hopefully not me too!) takes about 12 weeks apparently.
I do not know anything about bile malabsorption but hopefully your test will show something.
For bad diarrhoea with clear scans, and besides SIBO, the other things that come to mind are :
Lactose intolerance, you have to cut out all dairy or try some lactase enzyme pills when eating dairy. But read food labels - they put milk, pure lactose or milk derivatives in a lot of processed food. Some people can't even tolerate butter. I order my lactase pills from germany along with b12 (they're cheaper), but any pharmacy carries it.
Fructose malabsorption is a strange once and supposed to be only genetic, but a relative has a non-genetic version and she found lactase pills work for that too! It happens when foods contain more fructose than sugar. The fructose can't be metabolized and gives all sorts of GI symptoms. A spoonful of table sugar also neutralizes the fructose.
Non-celiac gluten sensitivity is basically you have all the symptoms of celiac disease, and cutting gluten solves them, but you cannot see anything in blood tests or on endoscopy. This is more & more recognized by the medical community.
Adrenal insufficiency / Addison's disease can also cause diarrhea but you'd have other symptoms too.
Kefir, kombucha, and related fermented drinks/foods can help add back in missing bacteria.
There may be other things!
How are folate levels? Are you taking folic acid or similar? Low folate can also cause low b12 symptoms. B12 needs good folate levels to do its job.
I have bile acid Malabsorption following the removal of my gallbladder. I had a Sehcat test and this is how it was diagnosed. I also have PA. None of the bile acid Malabsorption meds have worked for me. I don't absorb meds well and deficient is alot of vitamins. I SI B12 at least twice a week, sometimes more frequently.
Hope you get results. Have you been tested for H-pylori? This can be a breathe test or stool sample. I keep getting this and it's never fully eradicated with the meds I get (again likely due to bile acid Malabsorption) is what I'm told. For me bile acid Malabsorption means I live with chronic diarrhoea (10 times a day is a good day).
I was diagnosed with BAM in 2019. I noticed that my B12 was low (serum blood test) and raised it with my GP who responded by adding in my medical record the remark NO FURTHER ACTION. I was told by the Consultant who diagnosed the BAM to avoid cheese and whole milk and I was eating a mainly vegetarian diet. Bet you've guessed where this is leading. Two visits to the Doctor 6 months apart about discomfort in my toes and finally a serum B12 test revealed what the Doctor described to me as Pernicious Anaemia. Of course the AB test was negative but I had the loading dose followed by 2 months injections and my neuropathy problems persisted. After some testy exchanges she told me the local Integrated Care Board would not permit the NICE State of Current Knowledge to be applied (a lie) and I should go private! I did and am much better but the neuropathy in my toes is still there.
On a practical level the seHCAT is not invasive and I medicate with Colesevelem which is effective. Medicating with pain killers or vitamins is a problem because the Colesevelem works by precipitating out salt in the stomach so the medication goes with it. It's all a matter of timing. I now eat cheese and more meat and am having twice weekly B12 injections. Not cheap so I am considering SI.
sorry to hear you’re suffering. I’ve just had tests for BAM , SeHcat scan and waiting results. I’ve had SIBO and have just done a test for that to see if eradicated.
I suffer with histamine intolerance too . I work with a private doctor who thinks I now have autoimmune and gallbladder issues. I get diarrhoea when having a gallbladder flair up.
Hi andepande, Your digestion issues may be due to a "lack of" Bile being secreted from your Gallbladder rather than malabsorption and probably a whole host of other things that can be caused by an advanced state of Autoimmune Pernicious Anemia. Assuming you've been diagnosed correctly meaning you have Intrinsic Factor (IF) antibodies or Parietal Cell antibodies plus high serum Gastrin or both then you would have Autoimmune Metaplastic Atrophic Gastritis (AMAG) AKA AIG. Where your Gastric Parietal Cells (PC)s are destroyed and replaced by Intestinal Metaplasia. PA is but a symptom of AMAG. PCs not only produce IF but also produce your Gastric Acid and when enough are gone you will have either low stomach acid (hypochlorhydria) or NO stomach acid (achlorhydria). I personally have zero stomach acid and took some time to figure out what was going on and I lost 90 pounds as I could not hold anything down.
Properly acidic Chyme (food processed by your stomach) entering the Duodenum (1st part of small intestine) will cause your Gallbladder to contract thus releasing Bile into the small intestine. As it enters the small intestine Gastric Acid excites enteroendocrine cells in the mucosal lining that release a hormone called CCK (Cholecystokinin) which is a messenger to your gallbladder saying “hey buddy, time to contract, gimme some BILE!” thus squeezing/releasing bile into your small intestine. This is of great importance when you eat a high protein meal. So, without stomach acid your entire digestive engine comes to a screeching halt!
There are a couple of ways to test for stomach acid levels. The more precise method is when you have your next Upper GI Endoscopy, or as they call it in UK Gastroscopy, ask them to check the PH of your stomach. during your Gastroscopy, since you will have fasted, they will inject, through, the endoscope, a substance to excite the epithelial cells present in the antral mucosa of the stomach thus calling on them to produce Gastrin just as if you had ingested food. They will the then suck the gastric fluid out and test the PH Level. If it's around a PH of 2 then that is highly acidic, if its around 6 or 7 then that is low to no acid.
The other method of testing Gastric Acid is good only if you been diagnosed with AMAG/PA with either PCAB or IFAB or both. This is a simple serum Gastrin blood test. Really high, above normal, serum Gastrin levels equate to low/no Gastric acid.
I've had both of these tests done my results are through endoscope my PH was 6 or virtually no gastric acid. My serum Gastrin tests results are over 1000 pg/mL. This test will not give you the precise level of acidity or PH but will certainly indicate whether you've no/low gastric acid but is only useful or specific if you've already been diagnosed with AMAG/PA. The reason is high Gastrin levels without low stomach acid can be related to other things.
I'm not a doctor but my rather humble guess is that anyone that has been truly diagnosed with AMAG/PA and experiencing digestion issues it's related to low/no stomach acid. Yes, including bile and Gallbladder issues.
wow thank you for all the information. Yes diagnosed with PA over 10 years ago to say I was not well was an understatement I went down to 6 stone . Then thyroid went bump . My old GP was brilliant and said other things might start to go wrong 😂 she retired sadiest day of my life not found another GP who understands .
The SehCAT scan is a 2 stage process; at the first stage you have a CT scan of your intestines which takes about 10 minutes and swallow a radio labelled bile acid capsule; you return a week later for another CT scan and the Radiologist hen compares the 2 scans to see how much bile acid is retained in the intestines; the lower the percentage of retained bile acid, the worse your BAM. This process is a bit like the Schilling test for PA which used radio labelling.
BAM is associated with chronic, urgent diarrhoea. I believe the issue is that bile acid is seeping into the large bowel and the body responds by try to expel the bile acid which results in diarrhoea.
BAM leads to the malabsorption of Vitamins (typically Vit D and B12). There are people in the patient support group for BAM who have PA and have B12 injections but there are many patients with BAM who do not have PA and can raise their B12 levels with oral supplements.
For people with PA, low stomach acid is often an issue. You will find good discussions about PA and low stomach acid here:
For people with BAM, it's the urgency of the diarrhoea that is the main issue. People who had their gallbladders removed appear to suffer worst. The main treatment is low fat diet and bile acid binders; weight loss drugs like liraglutide are also being investigated. Imperial College and University of Warwick are the main places where research into BAM is done in the UK.
There is a UK charity for patients with Bile Acid Malabsorption: bad-uk.org. It has a Facebook forum where you can ask questions.
I've had gastro problems and read many of the replies here. I always try to find a natural solution, as in diet. I've learned through trial and error that I have to stay away from gluten, even slight gluten contamination, cheese, beef, milk products and preservatives and good additives in processed foods. When I eat a meat with high fat content I need to take an artichoke extract capsule to help my bile process the fat. I also take a digestive aid and betaine hcl for stomach acid in order to digest my heavy protein meals. The diary enzyme to tolerate lactose didn't work for me, so I just stay away from it. Good luck!
Yes, I too have gone gluten, dairy, caffeine, and sugar free diet. I believe eliminating those have gone a long way in taming the inflammation of gastritis.
How are you getting on now? I had chronic diarrhoea from last November, nhs dietician diagnosed BAM, especially once I said I'd had my gallbladder removed-however, the Chiolestagel tablets they prescribed (which I haven't taken) can absorb vitamins and minerals 😔, and I decided to up my SI to every day (as I was feeling really exhausted due to not 'keeping' anything I Was eating in my system long enough to get the goodness) and I can only say that after a few days the loose bowels began to return to normal. I had become very yellow too, but GP refused to acknowledge jaundice, saying all liver tests were normal, but I Am still yellow, and I believe this is probably my B12 deficit as I kept forgetting to SI to keep on top of it all, and I'm hoping a concerted effort of every day SI until I start to feel the improvement properly won't do me any harm, as long as I keep the co-factors balanced.
Hope that all makes sense, and I really hope you are feeling better xx
I’ve not had results so think that one is ruled out . Stomach not great again at moment . I have started SI everyday when I remember I just ran out of needles though didn’t register I had no more 🫣. my neuropathy has return in my fingers , and I’m very tired . Also losing words again , my staff fill in the gaps 😂😂 .
Consultant said in a recent letter before test will review in 6 months . It’s very tiring trying to get it sorted 🫣. So as we all do keep trying to get listened to . Take care of yourself
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