Hi friends, I come here to post and read other's posts about this disease we are fighting. Changes, symptoms and comfort most of all. Thankyou. My worst symptom is bloating and pale, odd colored stool. Anyone else experience this? Been on Urso about 2 years now. Liver tests are back to normal, except bilirubin is a little high on this last test. I'm re testing soon.
Also, I get tan very easy! Anyone else?
Anyone from the Washington State?
Again, thankyou for being here, helping us newer diagnosed PBCrs not freak out when something changes. 😁❤️
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TanGram
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I’m diagnosed 20 years, taking urso but my 3 enzymes ALP, AST ALP have been a little above normal. Recent liver biopsy shows stage 3 fibroses. I took 10 days of my second round of Fenofibrate and like 10 years ago when I first took it, I had flu symptoms. I stopped taking it and am instead getting in line for clinical trial drug to reduce fibroses
For the past 3 weeks, along with 8oz lemon water and a cup of coffee with oat milk, I’ve taken a 4 oz blender mix of water, 1/4 teaspoon cayenne, ginger, cinnamon, turmeric, pinch of black pepper, a lemon (cut it the seeds) and a hand ful of greens usually kale. Sometimes I put in a tablespoon of manuka honey. Sometimes I put in a tablespoon of kimchi my friend makes. Don’t eat till 11 or 12. Bloat goes away, skin clears,
Don’t eat additives and preservatives, cows or pigs, milk, white sugar or wheat white high additive and preservative bread. Use Celtic salt. Take Ursodoil.
All my 3 enzymes are normal now as of blood test 2 days ago. Top level of normal range but normal. All other blood tests have always been normal
We’ll see what enzymes are after 6 weeks with no fenofibrate and my morning cayenne lemon etc shot while I wait in line for clinical trial drug. I’m also cutting all my supplements for 6 weeks to see what blood test says about vitamin levels, and enzymes.
I suggest taking my morning shot along with your Ursodoil to get rid of bloat. Talk to doctor about it, Dr will say it won’t hurt.
Hello! I just wanted to pass along some info my liver doc told me when first diagnosed. She said no tumeric as it increases bile production and our bile ducts are already under attack. I hope that helps.
I’m currently on a Low FODMAP diet at the instruction of my gastroenterologist. It has helped a lot with bloating. I’m in the reintroduction phase and have learned some of my triggers (mannitol foods). Might be worth asking your gastroenterologist about (don’t do this diet unsupervised).
BTW there was a study many years ago in the UK that showed benefit of tumeric in PBC but don’t know what the current situation is. Best check with doctor.
I have been told a big NO to tumeric by my hepatologist and had a friend told a big NO by a pharmacist as a supplement. If you are from a culture that eats tumeric in your food it's a different story than taking Tumeric as a supplement.
I drink it as a combo tea with ginger. The research papers seem to be all over the place. Apparently helpful for NAFLD. I know when I stopped drinking the tea for a few days when I ran out, felt worse. So not sure what’s what? My hep knows I use it this way.
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