Vitamins for PBC

[MSJT]

Does anyone know if particular vitamins should be taken if you have PBC? Thanks

[Buddy2017]

When I was first diagnosed my Consultant told me to take a high strength Omega 3 ( Boots ) and not Omega 6 .....no idea why ( I was in shock at the time and didn't ask )

[butterflyEi]

This question has been asked on the Q&A sessions sponsored by the PBC Foundation on Facebook a couple of times and the specialists have replied that a multivitamin can be taken. Also for those of us who live in the northern hemisphere or those who rarely get any sunshine to their skin Vitamin D is recommended.

Quite some time ago I watched a PBC Round Robin on YouTube and a specialist suggested that those of us with PBC may need vitamin A D E & K the over rider of course is - if you have cirrohsis (decompensated liver) anything you take needs to be approved by a specialist.

For myself I use Better You vitamin D plus K spray and as I am over 50 I taken ProVen 50+.

[MSJT in reply to butterflyEi]

Thanks for your reply. This is really helpful as my consultant has not said anything about vitamins.

[butterflyEi in reply to MSJT]

The PBC Foundation have a helpline if you need more information and their web site (recently upgraded) is very good.

[Michi1]

When I was first diagnosed I did A LOT of research in traditional and holistic medicine. I should preface by saying most of this was not recommended by my hepatologist, but it is part of what I have done for seven years. My labs have normalized and my fibroscan has gone from 8.2 to 3.9.

First, take your Urso. If you stop your labs will go up again and pretty fast. I know. I tried it.

Second, cruciferous vegetables are great for your liver. Cabbage, broccoli, cauliflower, brussels sprouts, kale. Learn to love them. Also, there’s some evidence out there now that people with PBC have a certain pattern in their microbiome. Eating lots of fiber and fermented (probiotic) foods can increase the diversity in our microbiome, so give them a regular place in your diet, too. Worst case, your body will thank you.

When I was first doing research I discovered work by Dr. Sandra Cabot. She’s Australian. She’s not a hepatologist but she fell into treating lots of liver problems and she seems very knowledgeable. Her information about PBC was limited, but in her book she claimed you could heal the bile duct damage. She had a suggestion about supplements: 1000 mg of Vitamin C twice a day and 200 mcg of Selenium twice a day. My doctor approved taking these as she said it couldn’t hurt. I’ve done this for seven years.

About a year after my diagnosis, my labs were much improved but not yet normal. I did an elimination diet you can find in The Autoimmune Solution by Dr. Amy Myers. At the end I reintroduced foods, per her instructions, leaving gluten grains for last. I had intestinal cramping that doubled me over for a couple of hours, and gas that I can only describe as toxic. I wanted to run away from myself. Turns out 40% of us PBCers have celiac disease and lots more are intolerant or allergic to gluten. I had cut gluten out for most of a year before I told my doctor. I can’t get a valid medical test unless I cut out gluten for two months, even a biopsy as over time the damage heals. I know that when I have wheat as an additive by accident my mouth tingles and I get bumps in the roof of my mouth. Once a waiter lied to me and I ate a pile of fries that it turned out were coated in flour before freezing. I got gas within a half hour and the next day was in bed all day with brutal body aches and a fever.

Finally, about five years into my diagnosis, my Vitamin D level dropped to just under the normal range. My doctor prescribed D3 for a few weeks to boost it and then I started taking a Vitamin D2/K supplement.

I hope this helps.

[CeeCee101]

I had a different journey than you Michi, but also ended up gluten free. I also have been dairy free for the most part for years since my original liver doc said it could help (check with your OWN doctor) though he said yogurt and certain harder or aged cheeses are fine due to aging. I take prescription Omega-3. I also take tumeric or use it in food. There’s been discussion on here about it and so once again check with your own doctor. Seems to help keep inflammation down for me. And I take Vitamin D and CO-Q 10. And magnesium. Been thinking of adding C. Also I had a different gastrointestinal journey in that some of the food Michi can eat I can’t. My gastro had me do a low Fodmap diet. I’m through the entire process and figured out what was making me sick (mannitol foods) and think it has helped overall. There is a lot of research ongoing about how autoimmune diseases and the gut have a big connection. But don’t start anything without running it by your doctor. Cheers

[Gaspereaux]

it was suggested to me to take Calcium, Vitamin D and B12.

[234WARD03 in reply to Gaspereaux]

We can't buy vit B12 in GB over counter. I believe that you can get similar symptoms from too much as too little. It is advisable to discuss this one with your gp.

[Gaspereaux]

It actually was my internist….