Could Members With Experience of PBC Without A Gallbladder Feels Like , Is Treatment and Diagnosis done the same way? Thanks

[Blearyeyed]

I've got a number of Chronic Health Conditions . I had a gallbladder removal in 2014 but have had recurrent pancreatitis, liver and pancreas pain and liver symptoms since then that have recently got worse. The burning in the upper quadrant us constant.

I also have GERD , Gut dysmotility because of Dysautonomia, recurrent gastric infections , IBS with Constipation and recurrent right quadrant pain .

My skin is , and has always been incredibly dry and itchy but now it itches and burns all the time. I am already diagnosed with Sicca Syndrome , Red Eye Syndrome and reactive skin issues.

I also have Dysautonomia in the form of a genetic fault in the sinus node, Fibromyalgia and Ehlers Danlos Syndrome. I was recently also diagnosed with Vitamin B 12 Anaemia/sero negative PA , I have malabsorption problems that cause regular Vitamin D deficiency and have Chronic Migraine and Fatigue syndromes. Basically , I have many health issues that either link to my EDS and Autoimmunity.

I'm about to go for genetic testing for EDS typing and to establish if I have Family causes for Autoimmune problems with the Pancreas and Liver , as many people on my mother's side of the family have died from undiagnosed liver / pancreas issues but there autoimmunity was not tested because of the progression the PBC and liver issues had got to. Treatment was not an option by the time things were found at the Emergency room.

I have got to the point that I know these symptoms are not controlled but my liver function results are inconclusive and I have a long wait to get a referral unless the right tests are done by the genetics unit or I get the right tests at the GP. There are no GPs at my surgery or in my area with knowledge of PBC or other hereditary or autoinflammatory/ autoimmune liver problems.

I basically , just need a bit of information and to hear about the experience of PBC patients of the symptoms and type of test levels they got prior to diagnosis. Plus , the experience of people like myself of how symptoms and treatment may have differed for those without a gallbladder would be incredibly helpful too , as I am unsure if the way symptoms present themselves would be different for those whom already had gallbladder surgery to those whom haven't.

Thanks so much for reading this and any help you could give me.

Take care everyone , Bee