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Welcome to our community! We’d love to learn a little about what has brought you here.
I’m 19 (F), and I was recently diagnosed with Primary Biliary Cholangitis (PBC) after dealing with symptoms for about 2 years. I’ve had nausea, vomiting, diarrhea, basically no appetite, pain in both sides of my upper abdomen, itching, and extreme fatigue that gets worse when I eat.
I hadn’t seen a GI doctor since 2017 when I was diagnosed with Gastroesophageal Reflux Disease, Gastroparesis, and Gastritis. I’ve always had stomach issues growing up, but they actually got better in my late teens—until I started my freshman year of nursing school.
The first symptom I noticed was itching, which I brushed off as allergies. Then the fatigue hit in summer 2025, and it was like nothing I’ve ever felt. I’m a college athlete and have always been active, so I just thought I was burnt out at first.
By December 2025, everything got way worse. All the other symptoms started, and I was miserable. I lost 40 pounds in 2 months without trying, which is what finally pushed me to see a GI doctor.
When I went, he immediately blamed everything on my weight (which has happened to me before). I had to really push for testing. They eventually ran labs, and my antimitochondrial M2 antibody came back at 110.1 and my alpha-2-macroglobulin was 289—but I had to find that out myself because no one ever called me with the results.
A few months went by and I was still dealing with all of this while trying to get through my sophomore year. Then randomly I got a letter from a hepatologist in another state—the GI had referred me without telling me and wasn’t even going to follow up.
I felt completely lost at that point. I started looking for a new doctor and finally found one. I have an appointment on May 13th to figure out how bad the disease has progressed.
I joined this group because I honestly feel really alone in all of this. People around me don’t understand, and I feel like a burden sometimes because I have to rely on others to take me to appointments when I’m really sick. I’ve even lost friends because they don’t get that I can’t just “push through it” or go out whenever.
Some days I barely have the energy to get out of bed, and other days the pain is constant no matter what position I’m in.
I’m just hoping to connect with people who actually understand what this is like. I’m really grateful to have found a space like this, and I’m looking forward to hearing your stories.Hey,
! I’m really glad you found your way here, even though I hate that it had to be under these circumstances. What you're carrying at just 19 years old is unimaginable. Everything you described, from the fatigue, itching, weight loss, and how eating makes things worse, sounds incredibly draining, especially as someone who’s used to being active and independent. It makes total sense that you’d feel isolated with everything changing at once. Losing your energy, your routine, and even some friendships all at the same time is a lot to handle. But even still, with all this, I want you to know that you are not a burden. Needing help when your body is going through something like this is not weakness, and you deserve to be surrounded by people who love and support you through the hard times. I hate you had to go through so many challenges in your journey, but the fact that you never stopped advocating for yourself is the best thing you could have done. Hopefully your appointment on the 13th gives you some clear answers and a plan that actually helps you to move forward. We're here as a community to champion through your journey and support you any way we can. Just take it one day at a time for now. That’s more than enough. 💛 And if you're comfortable, we'd love to get an update on how your upcoming appointment goes if you're open to sharing. You'll be in our thoughts. Warmly, Latoya (Team Member)
I’m 73 and just diagnosed with PBC Nov 2025. My ALK levels have been on the high side for years but last August they hit 222 so my PCP insisted I see a hepatologist (3 month wait for appt). I had worked 12 hours a day sitting in front of a computer till 2024, was 60 lbs overweight, a social drinker, have celiac (autoimmune) since birth but gluten free since 2007. My PCP thought that these factors all together were the cause of high ALKs until they got too high I guess. Liver doc did specific bloodwork and said an antimitochondrial antibody test confirmed PBC. I had never heard of this, had no symptoms and the liver doc was unalarmed when he told me. But he ordered a Fibroscan that was misleading as it can’t see thru my fatty liver so he then ordered an MRE that confirmed stage 2 fibrosis - PBC. He told me to lose weight, particularly visceral fat, no alcohol, exercise, and put me on 1200mg ursodiol daily. I did a lot of AI research and put myself on a gluten free Mediterranean diet. As if I wasn’t annoying enuf to go out to dinner with by asking waitstaff tons of gluten free questions, now also requesting low sodium, low sugar, low carb etc. I cook a lot more and so far have lost 35lbs but I’m older and a good exercise regimen is challenging. I keep trying. ALK levels down to 157 but more to go so fingers crossed. I see the liver doc every 6 months. Still asymptomatic and praying it stays that way. Urso is def working but expensive as Medicare puts it in a high tier. If I ever need more advanced meds they are not covered at all. So I must make this work! Ugh and SMH!
That’s a lot to take in, especially getting diagnosed when you weren’t even feeling any symptoms. But it really sounds like you’ve stepped up and are doing what you can on your end, and that’s not easy with all the changes you’ve had to make. But I really hope your numbers keep trending down, especially with how much effort you’ve been putting in. It’s tough that the medication that’s working comes with financial stress, but you’re clearly doing everything you can to stay ahead of it. Just keep going and take things one step at a time! Thanks for sharing you experience with us! All the best, Latoya (Team Member)
I went to my primary back in 2003 for a routine check up. I was 38 and hadn't had one in years. My bloodwork showed liver enzymes through the roof and cholesterol was over 400. A repeat of labs and a phone call telling me I have PBC. Sent me to gastro who confirmed through biopsy. Symptoms were horrible. Itching, nausea, fatigue, joint pain. Fast forward 16 years and in stage 4 with cirrhosis. Transplant was july of 2019 at 54. In 2021 through biopsy diagnosed with recurrence of PBC. So far everything is status quo. No real Itching yet. Just occasional nausea and fatigue. I am now 61 and will be 7 years post in July.
My goodness. You sure have been through a lot and have had to adapt at every stage along the way. That takes a great amount of resilience. But it’s good to hear things are stable right now, even if you’re still dealing with some symptoms here and there. Are you able to manage the fatigue pretty well day to day? -Latoya (Team Member)
I started to have abnormal labs in 2001. Over 25 years ago. The only thing the doctor said was don't take Tylenol and don't drink alcohol. I didn't do either. Soni assumed I was ok and the issue was never brought up again. In 2015, 14 years later I had gastric bypass surgery. The surgeon said you have a fatty liver, don't worry about it it will get batter after you lose weight. I lost 130lbs. Doctors said good keep doing what you are doing and your liver will be fine. Fast forward 4 years later I moved and saw a new PCP. She said Debbie you need to see a liver specialist right away. It took me 8 months to get an appointment then COVID happened and the world shut down. In 2020, I meet my love of my life. We get married mid COVID the world opens up. I finally get in to see the hepatologist had a biopsy and biopsy read Stage two, however all other imaging said cirrhosis. Doctor said no I am confident it's just stage 2. Well she was wrong I am stage 4 compensated with Cirrhosis. And finally received a diagnosis in 2021. 9 months after marrying the love of my life. Now in 2026 my kPa score is 3 times worse and only to be told I only have 2-4 years left. And not sick enough for a transplant. So now I am out of work due to Hepatic Encephalopathy that is not improving. Feeling miserable and just sad about having to give up my independence due to HE. The fatigue is just terrible and it is difficult to just survive most days.
I learned so much more about you,
. Thank you so much for sharing such a personal story. Your story isn’t just about PBC, it’s about years of being told you were fine, things getting brushed off, and then suddenly having it all hit you at once. There’s a real grief here and it's not just about your health, it's also about the life you expected to have with your now partner. I'm so sorry you had to go through so many highs, lows, and turnarounds in your journey. You certainly didn't deserve this experience, especially after doing everything as directed to ensure a better life. But even with everything you’ve been through, you’re still showing up and telling your story, and that means a lot because there’s still so little awareness about PBC. So voices like yours really do make a difference. You deserve to have support, understanding, and moments of relief in the middle of all of this, and I truly hope you get more of that. You're not alone here, and we appreciate you being a part of this community. Warmly, Latoya (Team Member)
