PBC Diet and Multivitamins

[N-Sedky]

I am on a low sugar, low salt and a vegetarian diet. I try hard to eat healthy and fresh as much as I can, trying to cut dairy too. Are there any other nutritional tips that keeps our body performing better, any herbal drinks or supplements? I take a multivitamin with high vitamin D to support the loss of it due to mal absorption. I drink ginger tea and I'm on 3 times Urso a day. Is it important to take Urso with food and in the same hours everyday?

[Ktltel]

Hi,

What do you eat exactly? When I first was diagnosed I googled liver friendly foods and added those to my diet. Then I googled foods that were hard on the liver and I avoid those.

As far as supplements goes, because they are unregulated, and what seems to help some can cause harm to another, making recommendations tends to be tricky. You never know what's going to be safe.

Manufacturing supplements comes into play as well. So many different brands to choose from. Each company uses different fillers in them and some of those can be detrimental to the liver. You have to be careful.

I know some follow Dr. Burt Berkson's protocol. He is here in the States, New Mexico I believe. I read he was helping PBC patients. Personally, I haven't looked into what he's doing these days. I did when I was first diagnosed 4 years ago. There is information about him online.

I believe taking URSO with meals is recommended. Taking the doses as your doctor prescribed them is probably a good idea too.

I've slacked off a lot this past 6 weeks. Being on lockdown isn't conducive to sticking to my diet. My liver is letting me know it too. 😑

Stella

[N-Sedky in reply to Ktltel]

Hi Stella, yeah I know what you mean. Lock down is not helping at all. I am eating or hoping to eat a healthy plant based diet, sometimes offcourse there is the odd slice of pizza or piece of cake here or there. I meant supplements related to the 4 vitamins that our bodies don't absorb and whether supplements would make a difference or none at all. I did exactly as you did regarding reseraching foods good and bad for our liver but that is he trick, some of those foods interact with autoimmune foods, so its very hare to decide to go with liver friendly foods or with autoimmmune ones. Cinnamon for example good for autoimmune diseases but can harm the liver and so on.. Stay safe and happy xx

[janetfolley]

Eat what ever you want as long as you stay healthy ..Urso tab i take 3 in morning with breakfast, vit b12, vit d3 and omega 3. I have had PBC for 16yrs. My salt levels are low so I drink half Oxo cube daily. Don't bother faffy about with fancy foods just enjoy life and stay healthy with plenty of walks

[N-Sedky in reply to janetfolley]

Thanks a lot Janet.

[Gin32265 in reply to janetfolley]

Agreed 🙂

[bassman45]

Hi. I'm learning that what you should eat is dependent on where you are in your PBC journey. After 21 years since dx I'm now in the decompensated cirrhosis stage (which means I have portal hypertension, slight ascites and varices). I am on low salt diet (1500mg/day). I've been advised by doctors to eat protein but limit red meat (so chicken, turkey and seafood). Plant based diet wouldn't work for me because I simply wouldn't get enough protein or calories; I do worry about malnutrition which apparently is a problem as we go through our journey. Also I haven't seen enough data suggesting meat is a problem for us (except beef in Stage 4). I take Vit D, a multivitamin and milk thistle - only multivitamin was recommended by doctors; the others doctor ok with but skeptical they do any good. I take my Urso religiously, exercise and nowadays, wash my hands regularly, Charlie in NC, dx 1999

[N-Sedky in reply to bassman45]

Thanks a lot Charile🙏 stay safe and healthy.

[recipes in reply to bassman45]

Hi, my doctor has told me the things that you are saying, except eat lots of protein and steak is ok because I need the nutrition and I can tell I have more energy when I eat protein , go low on carbs. I have wonder about drinking those protein shakes. What do you think.

[N-Sedky in reply to recipes]

Hi recipes, protein shakes are ok just be ware they have a very high sugar content so just check the labels or only add the protein powder to your own homemade shake.

[recipes in reply to N-Sedky]

thanks I do watch my sugar intake so I use a sugar called whey-low I order it from the internet. It is safe and don't spike my sugar. taste good and bakes great.

[N-Sedky in reply to recipes]

Oh really? Will try it. Thanks for the suggestion x

[ninjagirlwebb]

I just try to eat a healthy diet, avoiding processed foods. Occasionally I will have junk food because we need a break too. Otherwise it is no fun!

Like this is what I ate today:

Breakfast

1 cup of Coffee with unsweetened Almond milk

1 slice of swiss cheese, 1 slice of all natural ham (no nitrates) on 1 slice of whole wheat bread

Lunch

Fried Brown rice with celery, mushrooms & all natural ham - small bowl

An orange

Took Multi vitamin, Fish oil, Vitamin D supplements

Snack

12 almonds & a few slices of uncrystallized dried ginger

Cup of tea (plain)

Took Calcium supplements

Dinner

Alaskan Wild Sockeye Salmon fillet with broccoli & mushrooms

An Apple

[N-Sedky in reply to ninjagirlwebb]

Hi ninjagirlweb, wow this looks like a perfect diet, well done! I almost eat the same combination most days but some other days I have one cup cake or a slice of pizza in a rush. Not sure should we also limit fats all together or just choose a lower option like olive oil instead of butter and so on?

[ninjagirlwebb in reply to N-Sedky]

Well done for you as well! Keep up the good work!

This is basically how I ate pre pbc as well. I do give myself a break on weekends & will indulge in dessert & comfort food. Occasionally, even a glass of wine. My hepatologist said that was okay. I have maybe 12 glasses at most in a year.

For breakfast, I also love making steel cut oats in my Instant Pot, adding chia seeds, either apple or blueberries, & walnuts with a dash of honey or maple syrup or condensed milk. I really 💜 steel cut oatmeal; eat it most days for breakfast.

Our bodies actually need fat to function, so don’t limit it all together. Avoid saturated fats mostly...like butter or use sparingly. But yes olive & avocado oil are great substitutes for butter. In fact I only use these oils for cooking & salad dressings.

[gwillistexas in reply to ninjagirlwebb]

ninjagirlwebb...been thinking of you and hoping you’re doing okay 😊

[ninjagirlwebb in reply to gwillistexas]

I am well. I only go for Costco runs every couple of weeks to stock up on groceries. Other than that I am working from home & next week will be week 8 of WFH.

How are you doing?

[gwillistexas in reply to ninjagirlwebb]

Good to hear. I’m hanging in there. Our stay at home orders were lifted the end of April but still some restrictions. I don’t believe a lot of people in my city obeyed the governor’s orders. It’s just one big mess. I try to avoid the store until necessary. Will be interesting to see what happens with positive cases. We had 9 new ones yesterday. I try not worry too much like I did in the beginning, but I’m very careful. All we can do. Take care of yourself. 😊

[ninjagirlwebb in reply to gwillistexas]

You as well! I think that some states are not taking a careful approach to re-opening.

NY is going to do a 4 phase re-opening based on scientific trends & data. I am glad for Governor Cuomo’s leadership.

I don’t trust the federal government at all. They think people are dispensable. No, they are not. They think it should be survival of the fittest. Lives matter...should not leave it up to chance. End of rant.

[gwillistexas in reply to ninjagirlwebb]

Agree 💯❗️