I did an AMA test at my GP after 4,5 years of elevated Liver enzymes- with me it has been the GGT and ALT ,
Plus cholesterol( the bad one) is higher, and has been for the past 4 years, obviously being pregnant and gaining lots of weight (over 30KG)
For each pregnancy the GP thought it is only fatty liver due to being over weight. I also had E.s.r test done and it was a bit elevated.
I was then got a specialist appointment and was diagnosed by the gastroenterologist specialist at Austin Hospital on the 30th Nov. plus I have NAFL (Mild)
I have started taking URSOFALK.
The Fibroscan said 11% fat on the liver and no scarring of the liver.
My diet needed change, I used to eat a lot of takeaway and lots of biscuits and chocolate in the evening.
I have gone completely Vegan for a time and I am planned to start adding meat and dairy soon again. i only cook at home.
i have a few questions
does anyone have high cholesterol? and have you succeeded to get it down naturally by a specific diet? And NAFL as well? how long did it take for you?
How much salt do you consume per day? 1-5 teaspoons?
What herbs do you use to cook your meat with?
do you FRY in a pan, BBQ and oven bake as per usual? I used to fry my meat a lot.
what carbohydrates do you use? i am looking for Gluten free as i seem to be sensitive to gluten
do you drink coffee with sugar? Do you drink coffee or Green tea?
what about honey? Is it a good substitute for sugar?
do you eat out? If yes, what do you eat when you go out?
And lastly, there’s many mixed messages about coffee on PBC websites- some say avoid caffeine some say it is good 🤷♀️?
Do you drink Coffee or Green tea?
I am trying to find a balance as I have two very small kids and I hope and pray there will be a cure with Ursofalk or at least a way go reverse it , the doctor said there is no way for them to know if ursofalk will stop the progression although it is usually slow , to scar the liver though even though I don’t have a scar yet. i am stressing myself out as there isn’t too much security with the medicine based on what I have read.
i will ask them what the research is to stop PBC from scarring the liver - does anyone have any info if the studies research is being done?🙏
Thanks for your patience reading through this looong message.
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Tramezzini
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Sorry you have pbc, but you are going to be just fine since you caught it relatively early and no scarring. Just make sure you go to the doctor as needed.
There is no a cure for the pbc, but it is a slow progressing condition and if caught early and you respond to the urso, your life expectancy is not any different than the general population as per my Hepatologist. Just eat a healthy diet and avoid processed foods, but indulge every now and then so that you won't be triggered into bingeing.
Here are my responses to your questions:
does anyone have high cholesterol? and have you succeeded to get it down naturally by a specific diet? And NAFL as well? how long did it take for you?
I was almost like a vegan and couldn't get it down even with exercise. So I am on lipitor which works but only if you also watch the diet as well. If not, it will still be high.
How much salt do you consume per day? 1-5 teaspoons?
I don't measure or count salt intake but when I cook I don't use a lot of salt.
What herbs do you use to cook your meat with?
I generally just follow a recipe so whatever the recipe calls for.
do you FRY in a pan, BBQ and oven bake as per usual? I used to fry my meat a lot.
I do stir fries in a non stick pan. I only use extra virgin olive oil or avocado oil. I use a grill sometimes and also oven bake. It all depends on what I am making. I use the Instantpot alot too.
what carbohydrates do you use? i am looking for Gluten free as i seem to be sensitive to gluten
I do brown rice, white rice, quinoa, rice noodles and pasta. Obviously, shouldn't eat huge portions.
do you drink coffee with sugar? Do you drink coffee or Green tea?
I drink both coffee and tea throughout the day without any sugar. I either drink it with skim milk or no sugar added almond or no sugar added oat milk.
what about honey? Is it a good substitute for sugar?
Honey has antioxidants that are better for you than sugar. But at the end of day, sugar or any sweetener except for monk fruit or stevia just becomes fructose in the body. Sugar is not good for you in general so I don't use it much. I also drink plain sparkling water and no juices either. Monk fruit or stevia are better substitutes for sugar.
I use honey every now and then but sparingly; maybe 2-3 times a month. Honestly I dont like sugar in my tea or coffee so the honey is used when my throat is dry with tea or lemon and plain water. I only buy raw unfiltered honey from the local farmer's market.
do you eat out? If yes, what do you eat when you go out?
Yes I eat out once or twice a week and sometimes eat take out too. I mainly eat whatever I want to eat when I am out. I don't eat fast food at all which is not an issue since I don't like it. And I seldom eat deep fried foods.
This Saturday, for lunch I did a tasting menu so ate a salad, black sea bass over veggies, short ribs over mashed potatoes and carrots, and apple cobbler a la mode. And I had an apple for dinner. Didn't have breakfast other than my coffee.
Sunday, I had coffee and a banana for breakfast. For lunch, 1/2 of a chicken quesadilla and 1/2 of a seafood paella. For dinner I had a kale salad with beets, apple, pecan pralines with olive oil and infused fig balsamic vinegar. I also had pan fried chicken dumplings, and a London Fog Latte without sugar.
And lastly, there’s many mixed messages about coffee on PBC websites- some say avoid caffeine some say it is good 🤷♀️?
Coffee is good for you and I drink 3 mugs a day usually. I haven't seen any research saying otherwise.
In general, my hepatologist says just eat healthy most of the time and every now and then you can have a burger and a drink too. You have to enjoy life. Exercise is important as well. Hope this helps.
really appreciate your thorough answers 🙏 I am relieved that you do eat ‘normal’ and even eat out some time.
I didn’t know what to do, it is all so confusing. I know we need a little bit salt due to the iodine but of course eating at McDonalds or Dominos has more salt than we need. But at the same time it is good to know that we can make a pizza at home for instance or lasagna and not feel scared that I’ve screwed up my liver
Hopefully soon there will be a solution for this disease or a way to know for sure that everything is going to be ok
No worries. Just eat healthy the majority of the time and it's going to be fine. Keep a list of any questions for the doctor next time you see him/her. As long as you are not eating take out/junk food all the time, it should be fine. Eat more veggies and fruits. It will make a difference on your bloodwork.
As long as your doctor monitors you and gets all the tests needed, you should be okay. I know it is so devastating once you are diagnosed. My hepatologist told me when I was first diagnosed, to leave the worrying to him (he will do everything to keep on top of the condition) and for me to live my life the way I should. He said, stress makes any autoimmune condition worse. I think having a compassionate and knowledgeable doctor really alleviates the worry etc.
You are going to be fine! This is a condition that can be managed, so don't worry too much.
Fibroscans are used to check elasticity and scarring of the liver. For bloodwork, my doctor mainly looks at the alk phos. He also checks my vitamin D and since pbc makes us more susceptible to bone mass issues, he orders bone density tests for me. And every now and then we also do a liver sonogram. He checks the thyroid too...I have him do the TSH test once a year. That's about it. Oh...I also have him check the lipids (cholesterol) panel and liver panel. I see him quarterly.
I’am sure lots of people will join the conversation on what they found helped them we are all individual. For me I eat lower carb than I used to no junk food and I drink tea and coffee. I don’t fry any meat only slow cooker, grill , roast. If I eat out I normally go for the vegetarian option only because I find the meat options are usually cooked in lots of fat. I high cholesterol the good one though.
Also if newly diagnosed join the pbc foundation it’s full of up to date correct information it’s free to join.
I echo the thoughts of the other contributors. I have a diagnosis of PBC since 2006 but pretty sure I had symptoms up to 10 years beforehand. I put on quite a bit of weight but have since lost it and am around 70 kilos now. I take 1000mg of URSOdeoxycholic Acid daily. It is important to take the correct dose of URSO according to your weight.
The PBC Foundation is a good place to go to for up to date information. They have an app which you can download which is useful. I see Candy12 has given you the link.
Apparently the vitamins A D E & K are more difficult for us to process and if you stop eating meat completely to go vegan it may be necessary for you to take a broad based vitamin tablet. I have very little salt in my diet, for instance if cooking rice I squeeze a little lemon in the water instead of salt - it can make a nice change. I have a diet rich in vegetables (make my own soups for lunches in winter and salads in summer) but I also try to have red meat once a week, fish forms a large part of my diet but it has become very expensive. I like my own homemade fish cakes and eggs feature several times in the week. I pot roast chicken (skin removed) and the juice from cooking is used as stock for a soup after skimming. I prefer fresh fruit as a dessert but occasionally I will have made a marmalade pudding cake or lemon drizzle (without the drizzle) which makes a nice treat. You mention having small children which makes you a busy Mum and fitting in extra chores is not always easy. If you make something like your own cottage or shepherds pie (meat and potato) and double up on the portions there are left overs for the freezer for another time. Lasagne is another useful meal with leftovers for the freezer but it is a bit of a work up IMO. As I said I try to avoid adding salt but use pepper, basil, parsley, corriander, thyme and rosemary etc across different meals. Breakfast is mainly oats, nuts, seeds and kefir or yoghurt sometimes with fresh berries depending on the time of year but usually with a banana and sometimes with honey. I do not take sugar in coffee or tea. The research I have read on coffee is positive for liver disease. I like some fruit teas but am not keen on green tea.
In the UK there is an ongoing study since 2007 uk-pbc.com/ and in process there are a couple of studies into itching. There is still nothing to be done about the fatigue of PBC other than movement is medicine. I believe there are other studies ongoing but do not have links for them.
We reduced salt in the diet for my husband and now anything salty taste overpowering. Also for my husband we do not eat processed foods. I have benfitted from that also. We are in our 70s . We hope for a cure.Best wishes
Good morning! The number one best thing I took from your message is you were diagnosed very early. That’s awesome as it’s generally a slow moving disease. First I’m going to answer your specific questions. I’m a 46 year old mother of 5, diagnosed 5 years ago in early (compensated) cirrhosis.
1. I had shockingly high cholesterol when diagnosed, in the 620s… It started coming down with the Urso, but I did, and still do, take both fish oil and flax seed oil. I eat chia seeds and flax seeds whenever I can add them in to something. My cholesterol is picture perfect now. I never had fatty liver disease, just the PBC and PSC overlap.
2. I eat low sodium. I’m very careful about what I eat and sodium makes me swell up so I avoid it.
3. I don’t eat meat but I would bake it if I were going to cook it
4. I cannot eat gluten. I recently got “glutened” as they say, or cross contaminated and have been quite ill. I’m not diagnosed celiac as you have to consume gluten before the scope and it makes me very sick.
5. I do drink coffee daily. I don’t use sugar in it as I count calories. I dump a Protein Shake in my coffee every morning and that serves as breakfast and gives me 30 grams of protein. I only drink coffee and water.
6. I don’t eat out often because of the gluten issue. I don’t trust food I didn’t prepare. When we were on vacation in Key West a couple weeks ago I did eat a salad at Margaritaville as the server was so confident in their gluten handling and an impossible burger at the Hard Rock Cafe as she was so confident about it being gluten free.
Next, what I feel is the best advice for anyone in our shoes. I’m in early cirrhosis, so my energy levels and overall health may differ from yours.
1. Reduce stress. Easier said than done, but it’s vital to my health so I will cut people or situations out at will.
2. Reduce your standards. I’m no longer baking 8 hours for Christmas treats or making a big holiday meal from scratch. Store bought is fine.
3. Decide what is important and focus your energy there.
4. Eat right. Make small changes to get your diet better. Drink more water. Eat more veggies.
5. Mindful movement… go for a walk, do some yoga, move your body.
One last thing… I’m actively trying to build wellness in my body. I’ve lost weight. I’m active. I eat right. Why? I’m building wellness around my wonky immune system and failing liver. I’m hoping to build myself up to get through the rest of this journey… transplant is a hard road and I’m hoping to avoid getting that sick, but if it goes that way I want a fighting chance. Hang in there, it’s very early for you, so you are fortunate to have a chance to be careful and enjoy your beautiful family! ❤️ much love! ❤️
Did they tell you why you have it? How you got it? Did they analyse your microbiome? I am thinking of asking that on my next appointment. What was your life ( diet and lifestyle like) prior to your diagnosis? I saw my liver enzymes increase with first pregnancy but i also ate ever since my first pregnancy lots of sugar cakes biscuits ice cream and fast food and take away
It’s hard to not stress. I work full time and have kids as well.
Do you ever go out and eat? My kids like chips and nuggets
But havent been for a month ever since i got diagnosed.
Hi, to echo others, please don’t stress. It’s generally a very slow-moving condition and here in the UK it’s well monitored, sounds the same, if not more so in USA.
Cooking with meat, usually woody herbs, thyme, oregano, rosemary, then softer herbs at the end, mint for lamb, parsley. Also, I am a convert to cinnamon, just a really small amount can add an umami taste, especially if cooking lean cuts, try it and see what you think. Spices in general are very good, they add flavour and also have their own health benefits. Oh and my kids love herbs and spices, after eating them for so long, they wonder why meat in restaurants is sometimes bland.
You will do really well with the approach you are taking, tackle it head on, that’s the way to go and, as another poster says, approach it as general wellness. Good luck and do use the forum, even if it’s just to read some comments, it does help to know you aren’t facing this alone. X
I am in Australia , it doesn’t seem like we have any support group within the hospitals and no foundation etc here - which is quite sad when just diagnosed and no doctors that have the PBC in their Interests.
Do you use any salt at all? Did your doctor recommend any specific diet? Like Dr Mosley for example
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