Ehlers-Danlos Support UK

Gallbladder or fatty liver problems

Hi, wondering if anyone can help. I have been diagnosed with a sliding hiatus hernia which I can manage quite well but really feel I have gallbladder or fatty liver issues, even though previous HIDA scan and past ultra sound scans have been "fine." I have had about 4 episodes of acute colic but am now left with chronic pain which varies in intensity. Have any of you had your gallbladders removed and did it help? Or do any of you have a diagnosis of fatty liver and have had any treatment?

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yep. Had gall bladder removed 6 weeks ago. What does a "fine" scan look like? Is it just not meeting the threshold for surgery? When the episodes of colic were getting closer together and more debilitating I eventually saw gp. Omeprazole, buscapan and Gaviscon helped manage discomfort. I wish id gone earlier so that I could have managed gallstones thru diet. Ended up in A&E

make sure gp knows of day to day symptoms which might persuade them to be more proactive.....

still need to manage diet. Small reg meals, wary of fat loaded recipes. Def have a sensitive liver now. But things have settled.

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Thanks for your reply. I have been going back and forth to doctors for 20 years. Ppi just make things worse but digestive enzymes definitely help with reflux, heartburn etc and can't do cheese or full fat yoghurt. But some days are very uncomfortable and have definite impact on quality of life!

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Hi there,

When I started vomiting a few years ago they removed my gallbladder. It turned out not to be the cause, and was in fact a combination of POTS and manometry proven GORD and was mostly resolved with medication for those two conditions. While doing that procedure they biopsied my liver and diagnosed NAFLD, which over a couple of years progressed to NASH, intermediate stage.

I want to put a caution before the rest of this: everything I've done has been with medical oversight from multiple consultants and it is something to discuss with them. It may be very different circumstances between us which led to our liver issues so this is just what happened with me. I only say this because on the liver disease forum, as you can imagine there are people who are vulnerable to things posted as experience which can be touted as some sort of miracle cure and I am really against the forums being used in this way - going from shared experience to dangerous risk taking without medical advice or oversight. And I know doctors can often be wrong and that there are lots who don't treat EDS patients with respect, but I'd rather help find people a good doctor than see people respond to posts with a DIY approach.

I was diagnosed with MCAS and started on antihistamine treatment for that. It was a distant and unlikely hope for my hepatologist and I that potentially there was a link, as full-blown mastocytosis can damage the liver. I have been on the antihistamines for just over a year and my last scan showed my NASH had fully regressed and I went from late stage 2 to a healthy liver, and my consultant said Dr Aziz has been looking at this MCAS relationship and he believes I was reacting to my own liver due to the MCAS fault. It is worth speaking to your doctor about possible newly emerging links, as now my liver disease is inactive but it absolutely wasn't a cure. And it's important to mention that we did all the usual things too - dietary changes, I didn't drink anyway, and absolutely no unnecessary medication, especially ibuprofen type meds.

Sorry for the lecture in the middle - it's not aimed at you, it's more to make myself feel better as it's quite an unusual and lucky experience I had with my NASH which I want to share as it may have potential to help others who share it with their specialists but I wouldn't want to casually share it without any caveats and have any harm potential exist for anyone who reads this with a different set of circumstances who might think to try it instead of following the best treatment and management for them.

Feel free to message if you want any more details - happy to help as much as I can, maybe could put consultants in touch or recommend someone if yours is at a loss.

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Thank you so much pikamonster. I certainly take on board your warning. I just wish I could be investigated thoroughly. Doctor just wants to give amitryptiline which isn't great with low blood pressure and POTS with out doing uptodate scan, last one was 7 years ago. Not due to go back to see gastrienterologist until Oct. Have had diagnosis of hypermobility and due to see Dr Hakim week after see gastro and general physician so maybe he can make recommendations

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hope things settle for you. It's a very long and winding road. Take care

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Thank you, I am only 54 but beginning to get somewhere with a diagnosis and understanding of what is going on!!!!

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