APS & the gallbladder

Hi everyone, just wondering how many of you suffer gallbladder problems? Prior to "official" diagnosis in 2012 I'd had several scans to check for gallstones but always came back clear. I know now I've had APS since at least 1995 when first mini strokes occurred. Would go on and be misdiagnosed multiple times. (Neurologists involved, need I say more!)

I've read about "gangrene of the gallbladder" which can be caused by inadequate blood flow. I have most of the symptoms. Would I be right in thinking this is my problem?

Any feedback appreciated.

Carmen in Oz

15 Replies

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  • I've never made the link with my APS and gallbladder. I've had gallbladder pain since about 2006. Gallbladder removed in 2011- there were lots of little stones and he described them as 'sludgy'. Diagnosed with APS 2015. I've been experiencing abdominal pain on and off for the last few years and they think a stone is blocked in my bile duct. I should find out in 3 weeks time.

  • Carmen ,I had gallbladder problems and I have aps. I had to have mine removed .APS sucks that's how I would put it .I have had problems all my life due to APS .I also have lupus .I started having seizers in my 30. Last year at 46 I have had several pes and dvts and a brain bleed and stroke .I take meds for seizers and lovanox shot every day .All I can say is take care of yourself and if you think something is wrong find someone to listen .You know your body the best. Good luck to you

  • Hi Carmen, i have APS, Lupus, Sjogrens and a whole host of other nasties. I'm on warfarin with an INR of 3.5-4.5 and Diprydamole as the warfarin wasn't working on its own. I've always had a lot of abdominal pain, but i have IBS anfd have had gastritis a few times also get costochondritis often so rib pain is normal for me. Last year i had a 16 hour bout of severe violent vomiting, they scanned me and i had gallstones, i didn't know this until 2 months later the vomiting hit again but this time it put me in hospital, i had pancreatitis, which was obviously what the episode before had been. Two months after i recovered they removed my gallbladder with all the usual warnings of doom and gloom to do with the APS. I recovered very well thank goodness, getting my warfarin stabilised took a while though.

    No one at any time mentioned my gallbladder issues as anything to do with APS, but thats not suprising ias i usually have to explain what it is to doctors who aren't Rheumatologists or Haemotologists. I read afterwards that Lupus can cause pancreatitis, but it didn't mention anything about the gallbladder that i could find, but i probably stopped looking too early, my concentration sucks lol.

    I hope they get you sorted out, if you think you have that problem you mentioned you need sorting out sooner rather than later ok, good luck xxx

  • Hi Carmen, I had my gallbladder removed in 2007. That was prior to my strokes in 2013. Anyway, in 2007 I was nasty sick for three weeks and it took about 14 days before bloodtests came back positive. Maybe you will need a scan to get some answers..?

  • I don't have any gall bladder problems since they removed it.

  • Hi everyone, thanks for your feedback. It seems to be a common problem! Over the years I've had gallbladder scans, abdominal ultrasound, colonoscopy. Nothing showed up to indicate what was causing problem. I'm sure that there is some maybe minor damage to my gallbladder and bile is "sludgey" . Nothing that will show up in tests anyway. it is true we each know our bodies best so I'll eventually work it out. I'm peri menopausal as well so who knows, that may be aggravating symptoms.

    Take care everyone and hang in there.

    Carmen

  • I had my gallbladder out when I was in my early forties quite a while before I was diagnosed with APS after a stroke. I reckon looking back that I had my first gallstone at 17, but it wouldn't have been picked up then as it wasn't thought youngsters had gallstones and they didn't have ultrasound then anyway.

    My husband had his taken out when he was 50 and my youngest son had jaundice from a gallstone at 22.

    As neither of them have APS I don't see any connection. It is a fairly common condition. All three of us have been fine since.

  • Hello panda60

    Yes I agree gallbladder problems are common but I can't imagine that my gallbladder hasn't incurred some damage over the last 20yrs. I'm otherwise healthy and have no risk factors for gallbladder disease except APS so will just keep an eye on my diet and plod on.

    Thanks

  • I had mine removed prior to diagnosis, due to sludge too!

  • I was diagnosed with APS in 2005. I had excruciating gallbladder pain in 2009. It was surgically removed and sent to the lab. It was infected and green in color. Lovely, right? No pain or problems (with that part of my body) since it was removed. Also, tests that were run showed no indication that there was anything wrong with my gallbladder. My descriptions of the pain were enough for them to operate.

  • Ditto - gallbladder stone and sludge in 2011 when I was 28. Luckily the stone passed while I was in hospital and then I went on a low fat diet instead of getting my gallbladder removed and it really helped. APS diagnosed in 2015 after I had a TIA. Have sjogrens, aps, pernicious anaemia, lupus, hypothyroidism, RA and weird allergies in my family so the full smorgasbord of autoimmunity - feels like a waiting game to see which one might crop up next :-/ but also gallstones in the family - must be a link... Wishing you lots of good luck with your investigations - sometimes sludge doesn't show up on scan even though its there and causing loads of pain. Really recommend the low fat diet option if feasible/ok with your doc - I missed the cheese & croissants so much but avoiding fatty foods really helped reduce the gallbladder pain

  • I had a 9 cm polyp and I went on the Internet and looked up holistic remedy. I drank the juice of a lemon in water every day for several months and the had a follow up ultrasound. the ultrasound technician could not even find the polyp. Gone. No surgery!

  • I was a fit male in my early 40 and not overweight or any other risk factors when I had a series of Gall Bladder attacks and ended up in A&E. later diagnosed gallstones by ultrasound.

    It's unusual for men to have gallbladder issues - especially if they are fit and otherwise well so I knew something underlying was going on.

    I am currently awaiting a confirmation of diagnosis for APS. My sister has a confirmed diagnosis.

    The sequence of events that lead to this is mysterious.

    Possibly an infection of some sort that does not present as acute - these are known to interfere with liver function - and could even be the cause of the APS.

    Possibly the APS was present back then - 5yrs ago - and blood flow was reduced to the liver and gallbladder - leading to sludge.

    After much reading - I feel infection and/or gut dysbiosis seem the most likely root cause

    I would hazard a guess that a high proportion of APS sufferers also suffer digestive issues, bloating, gas, pain, food sensitivities, skin and neurological (issues linked to gut function) etc etc

    By the way - I was pressured by GP's and Surgeons to have my gallbladder removed.

    But my thinking was that it had a very necessary purpose and to be fully well again I would need it. So I looked for alternatives and followed the liver flush route ( google).

    After a few cycles of that my gallbladder was clear and I can eat high-fat meals again - that was about 4 years ago now and no attacks since.

    I now consider eating low fat for years as part of what made me ill, by running down my system and making me susceptible to stress, infection, etc etc

    In fact, I now eat a high-fat low carb paleo diet, not for any ideological reasons, just because after much trial and error that is the best I have found for my overall health.

    NB. Please do not take the above as advice - I am just relaying my experiences - do your own research

  • Hi garz,

    Thanks for your "history".

    When and if you are positive like your sister to HS/APS I hope you will come back to us on this site.

    Fantastic that you feel so much better without removing your gallbladder but eating high-fat low carb paleo diet. Congratulations!

    Best wishes from Kerstin in Stockholm

  • Hi Carmen, sorry for the reply one year late, but I thought I’d drop in my 2 pence worth.

    I’m a sufferer of APS with distinct SLE symptoms, also have Sjogrens and peripheral artery disease, bilateral carotid stenosis 50 To 60%.....

    Anyway, diagnosed APS in 2004, gallstones problem detected 2008, gallbladder out 2012 (it wasn’t safe to remove it earlier as my immune system was barely functional earlier on). Gallbladder was allegedly full of stones - the pain was excruciating. Stopped after removal. I don’t miss it.

    Presently have the odd sharp pains in stomach area, but not regular. Only thing I noticed since my cholecystectomy is - my stomach seems to have shrunk considerably as I can’t get as much food in it. Oh, and I can’t process chocolates properly any more, otherwise I’m pretty okay.

    It is possible that APS / Lupus sufferers have a high incidence of gallbladder problems resulting in removal. I wonder if anyone is keeping tabs?

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