PBC or Something Else?

[JaneIng]

Hi, all, it’s been 4+ years since my puzzling illness. I wonder if anyone here has similar experience before the PBC diagnosis.

It all started with multiple ulcers in my stomach and Duodenum in 2012. My GI doc prescribed Dexilan for 2 months and it took care of it. Eight months later, the problem returned and Dexilan was not working anymore. I was nauseous and dizzy. I couldn’t eat. After and ER visit, they found slightly elevated Lypase enzyme which indicates minor pancreatitis. An ultra sound showed some sludge in the gall bladder and my GI doctor decided the gall bladder is the culprit of all problems. So I had a gallbladder removed in 2013.

Then in 2014 I started having diarrhea after a colonoscopy procedure. Severe abdominal pain with some bleeding landed me in ER again. Diagnose is mild bowel inflammation. The ER doc gave me some Cypro and Flagil and sent me home. However my abdominal pain did not go away. I would have stabbing pain in the abdomen 30 minutes after every meal and the pain would not go away until the diarrhea complete. I lost about 15% of body weight, getting weaker every day. I had no appetite. The diagnosis: IBS, chronic gastritis. None of the prescribed medicine helped.

That’s when I started looking for functional medicine. I did all sort of test, diet, and supplement. Long story short, during the past two years of health quest, I was diagnosed with hypothyroidism, candida overgrowth, leaking gut, fibromyalgia and possible PBC. The food elimination diet and supplements healed my gastritis and IBS (about 90%). I gained half of the lost weight back. I am grateful for that.

I was never fully diagnosed with PBC. My AMA M2 is at 30.9 (normal range is <20). My LTFs fluctuate between normal and slightly elevated. One doctor told me that I might eventually develop PBC 20 years down the road. The other one says I need to be on AIP diet to stop the progression before it becomes full blown.

I like to believe that I don’t have PBC but many symptoms I am currently experiencing seem to be linked to PBC: itchy hands, pain in the neck/shoulder, hip and back, weak muscle. I also read somewhere that elevated Lypase can be caused by PBC. Does anyone here have elevated lypase?

Thanks.

--Jane

[Hidden]

Hello Janeing.

Must be frustrating living day to day not knowing a specific diagnosis or health issue.

It is said that the AMAs can fluctuate (though I've only had the one check, late 2010 that gave diagnosis alongside symptons and higher than normal range blood work).

I started itching early 2010 which led to diagnosis for me. I know that I had a blood check to determine if bone or liver related and it came back liver.

We can itch with any liver disorder and there is also as I found out, a kidney disorder that causes itching too (my late father-in-law had this a few years prior to his death in his 80s).

Medications can cause the LFTs to go above normal range (morphine for eg is one) also so anyone with other health issues might test for elevated LFTs. (I only take the urso for PBC, had no other medications since pre-diagnosis and even before I started to itch hadn't had any prescribed.)

If your doctor isn't sure (a liver biopsy tends to give a definitive diagnosis) and I can't say as I'm not medically trained but reading between the lines I expect you'll continue to have your LFTs checked for on=going changes and you might well be one that never develops PBC if you have it. Meanwhile I'd continue looking after yourself the best way you can and enjoy life.

I've no idea if I've ever had a lypase test so can't comment there.

[JaneIng in reply to Hidden]

Thanks Peridot for taking time to response.

I had a MRCP three weeks ago. They found a 1.8 cm cyst in the liver and a 1.5 cm cyst in my kidney. The doctor doesn't seem to be concerned. I will see him next week. Hope I will hear some reasonable explanation.

Have a blessed day!