Diagnosed with PBC a few weeks ago. I think I might still be in shock.

[ericalw]

I went to the dr.s at the beginning of February because I hadn't been feeling well for over a month, well I never really feel well but this was worse then "normal" (seriously no energy, fevers, diarrhea all day long, and I felt like I was walking around in a fog). I got blood work done on a sat, on Monday morning my dr.s office called to have me go back and get it done again and to make an appt to see her ASAP. Scary! Turns out the reason I was feeling worse was because I had a parasite (always fun).

But I'm actually great-full I got it because otherwise who knows how much longer I would have gone on without knowing. For the past ten years I have been living with the thought that all the issues that I have are allergy related. I'm allergic to gluten, dairy and yeast that I am aware of. I'm having blood work done and an endoscopy to check to see if I have celiacs as well as to check for varices in my esophagus. I've already had an ultrasound and they found what they think is a hemangioma on my liver so a biopsy is definitely out. I go for an MRI in early May to check things out again. My specialist also thinks I have IBS as well. Basically my entire GI tract is a mess. I need to also get my allergies retested as well so that I can have a comprehensive list to present to a nutritionist because at this point I'm pretty much stumped on what I can actually eat. I know this is really long and hopefully someone reads through to this point because I'm wonder if anyone else out there also has any other autoimmune disease or IBS to go along with their PBC dx?

I'm also worried because I've had severely itchy skin as well as steatorrhea (not knowing that's what it was) and trouble swallowing at times all for a while and with the hemangioma I'm worried about what stage I'm actually in and will they be able to tell without doing a biopsy?

Thank you for any feedback!

[Anne123_45]

Hey you look quite young in your pic (im 34) I got diagnosed pbc in June 2013..which was followed by diagnosis of sjogrens, mixed connective tissue disease and I already had psoriasis, ibs, raynayds.. All auto immune.. Life's been a bit of a roller coaster since.. But each day is a new day and I remain positive.. Because like you probably what's going on has been for years undetected.. It's better to get early detection and treatment.. My liver function has improved more than ten fold and is now in normal range as I am responding well to urso.. We're all here to help you vent or hopefully compare stories etc . The comforting thing is a lot of people have had this for over twenty years and they're still chipper x

[ericalw in reply to Anne123_45]

It's really crazy how no one seems to just have one issue. This disease seems to always come with multiple other diseases/syndromes/illnesses. I have been gluten free and dairy free as well as as yeast free as I can get and I feel like I've barely got a handle on that and now there's going to a whole new even more restrictive diet. Truthfully I'd rather that then having to be on a bunch of different meds, one more than enough for me, it's just that being my age and single and just moved eating and drinking play a major roll is socializing and I've basically had to cut them out. It's not the end of the world, or even my life for that matter, but it is a major adjustment. I'll get there, just not yet.

Thank you for your worlds of encouragement and support, it is greatly a appreciated.

X..E

[Anne123_45 in reply to ericalw]

I'm just realising you asked re how they tell your stage.. I'm in North East England and was told if diagnosed young they always opt for biopsy to ascertain any liver damage.. Don't worry about this though it's not that bad.. I did it and I'm a big wuss when it comes to needles x

P. S I haven't changed my diet that much but I seldomly eat bad food anyway.. Also depending on what stage you're in.. They may say it's OK for you to have a few drinks (as long as in recommended government guidelines) . This might just be the case if stage one.. The one thing I have changed is I make sure I drink two litres water a day. X

[liver-bird]

Hello ericalw - so sorry to hear you have been so unwell. I too was diagnosed with PBC just a few weeks ago and I agree it is scary - am currently trying to get my head around it all - there is a lot to know. Have been told there is no need for biopsy at present as my diagnosis is clear from blood test results.

I also have underactive thyroid (auto-immune) and raised rheumatoid factor in my blood (also autoimmune) and osteoporosis (could be linked with PBC). A recent MRI also showed a large hiatus hernia and diverticular disease. Now on urso and will find out soon if it is working for me. My itching is slight and mostly at night and I am not very fatigued. I get symptoms of IBS which worsen with stress, but have not been diagnosed. I find one of the hardest things is to unravel which symptoms relate to PBC and which are to do with other conditions. This must be doubly difficult for you because your allergies must complicate matters further.

PBC is not a common condition and so not well understood by others and you can feel very isolated. I find this site so helpful to hear from others in a similar position who do understand so keep in touch. Many people on this site are very experienced and knowledgeable about PBC and they are helpful and supportive. Good luck with your tests.

[ericalw in reply to liver-bird]

Hi liver-bird,

Sorry for the delayed response, I was in freak out mode while waiting for my appt with my GI dr and just couldn't seem to get out of it or pull myself together. I still don't have any solid answers but my dr is amazing and without even trying was able to get me out of my own head. I've decided that no matter what happens I'm not going back to that negative place. I was miserable and made everyone around me miserable for weeks. No more. Life doesn't come with any garuntees, I could die in a car accident tomorrow and all this would be moot. So, no more freaking out or moping around.

This forum definitely helps, knowing there are others going through the same, it similar things, I wish there were actuall in person groups for that but I have yet to find one.

I hope you are doing well with your myriad list of issues you have to deal with. It's so crazy how once you start down the autoimmune illness path it just seems to gain momentum and spiral into multiple diseases and it disorders.

Hope this finds you doing well and thank you for for your words of encouragement.

Xx..Erica

[MrsworryGuts in reply to ericalw]

If you get the Bear Facts magazine sent to you through the PBC foundation they normally publish a page of meetings held in the near future depends what area you are in though.

[ranrace]

34 years old Male and all the same issues. Probiotics (in a once a day) has helped my GI track a lot over the past 6 months or so. Talk to your doctor about that. Also the elimination diet really narrowed down what didn't agree with me. The problem is most allergy test will tell you what you are really allergic to, but not what your GI tract hates.

Here is a short list of things I don't eat

Gluten

Dairy (besides butter and cheese)

Chicken

Eggs

turkey (Wild is ok for me to eat)

Garlic

bananas

cantaloupe

green olives

peanuts

fresh water fish

watermelon

Peas

Carrots

and on and on and on

Going out for dinner is a challenge and I do 99 percent of the cooking for my wife and I.

I just wrote in my Bio page. Stage is for the liver (and doctors) not the soul. There isn't a thing I would do different if my biopsy comes back stage 0-4. Getting better is my only goal, so I can enjoy life more then ever before.

Whatever water you have been drinking, change it right now.

Good luck and keep that lovely smile because you are not alone.

Randy

[Mickey1964]

It's all so scary as I am a medical professional and could not get any real answers! The internet does not make thing better by telling you not other than you will need a liver transplant in 7 years well it is not the case this forum helps to support and help you feel you are not alone in this disease. I too have gluten issues and thought I had a bad gallbladder for years once you get on Ursodiol you will find ton of you digestion issues will clear up! This whole thing is a process you will find yourself relived, angry with how unfair, why me and at some point you will find the calm. We understand what others don't. it's all good don't count days make your days count!