Liver results...but no formal diagnosis and Allergist

General
1

John Hopkins checked, said that I had signs of bile duct blockage, but early/subtle, in my small ducts. As a result, my doctor was worried about Small Duct because there’s no sign of autoimmunity (in those slides). But the symptoms, I think, point to AIH too (at least the pain and hives) but told me that its incredibliy strange to have 2 different diseases in the same area with different signs, and referred me to an Allergist. While I’m going to check whether I have allergies, I don’t get how the liver inflammation is involved because the rashes leave half the time but the pain doesn’t and the rashes don’t react in a pattern. I’m also getting an enzyme test done (5HIAA?) Which is a bit confusing…

I’m most likely going to end with small-duct psc, but I don’t get how AIH wouldn’t be involved, even if its not where the biopsy was at. Did anyone with both AIH and PSC have to rule out something like allergies?

2

I am guessing they are just trying to rule out that the rashes could possibly be caused by allergies.

I have PSC, and when my itching gets bad, it is usually accompanied by some kind of breakout.

I have read that the prognosis for small duct PSC is more favorable than large duct PSC.

3

I most likely DO have allergies to something…but they don’t feel like their correlated to the rashes. I have a really strong suspicion about something I’m eating in particular, but the rashes happen so…infequently in comparison.

I’m hoping its just allergies with the duct thing separate and not AIH with it.

4

There is a condition where PSC/AIH overlap. So it can happen. Whether you have that I just don’t know. There are other complicating factors. For example, it wouldn’t be unusual to have other immune related conditions in tandem with PSC, even those that don’t have a specific relationship to the liver. There also conditions and symptoms associated with IBD that can present as you describe. Given the known relationship between IBD and PSC that too could be a possibility.
Really, I’m afraid sometimes finding the right diagnosis can be a minefield and a lengthy process of illimination. You may just have to settle in for the long haul and be prepared to travel up a few dead end streets in the process.