Severe Autoimmune Disease - Primary Biliary Cholangitis (PBC) | Where Do We Go From Here? CHANGES!!

I have been diagnosed with a rare and severe autoimmune Disease which is called Primary Biliary Cholangitis (PBC). Discussing my next steps, what changes I need to make right now to prevent it from getting worst. And my new diet. Also, why I can't gain any weight!! Thanks for your support. Please leave any questions or comments below and I will try to respond quickly. xoxo Maria
Did you know of PBC prior to this video?
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#liverdisease #PBC #Primarybilliarycholangitis

[@user-li3nq3sb3x]

Diagnosed 1994 transplant 1996 doing well take medicine twice a day. I lead an active life, gardening, mowing lawn and such.

[@LifeAccordingtoMaria]

So glad to hear that you are thriving!! Shows you that it is not a death sentence anymore. Blessings.

[@suriasanchez8723]

What are or were your symptoms that lead you to learn you had this PBC? What tests you had?

[@rlcam6175]

Thank you for sharing. Very approachable.

[@LifeAccordingtoMaria]

You're very welcome!

[@marylee2732]

Thank you so much for the clarification. I was just diagnosed with PBC with cirrhosis and high ferritin in late Sep 2022. So far so good, but I’ve been a 33 year light-medium smoker. It’s so hard to stop when my husband still smokes, but the coughing keeps me on track.

[@LifeAccordingtoMaria]

Definitely try very hard to curb the smoking. In our situation we need to treat our bodies as best as we can. You don’t want the cirrhosis to have acceleration due to smoking. Good luck. You got this! 👍🏼

[@lawoman4602]

Thank You, Maria, for this very informative video. I am 68 years young. I was diagnosed 10 months ago after BW and biopsy (no CT or MRI), went on Keto the next day and have lost 35 lbs. My BW #s are down to 1/3 from what the high numbers were and my specialist has said I am doing great and to keep doing what I am doing. On the scale of 1-4, I am about a 0-1. Of course there is still the auto-immune status which I know I will have but the outlook is surely looking better. I was devastated by the diagnosis but decided to be proactive and I now have a better outlook. PS. no itching symptoms and I take ursodial also.

[@LifeAccordingtoMaria]

Thanks for the comment. Much appreciated. :) My doctor told me to do Mediterranean Diet and that is how I control my numbers now, along with Urso. No more processed foods for me, no alcohol and plenty of fruits and veggies as well. Keep up the good work, I am sure your numbers will be much improved!

[@mariavanderlugt3670]

How are you feeling with the urso med have u gsin weight😢

[@lawoman4602]

@@mariavanderlugt3670 I am feeling great. I was don 48 lbs. but I gained back 7 after not doing serious keto for a few weeks due to holidays and vacation. I can't blame the medication. I hope you are doing well. Several of my bloodwork #s were back within normal. I know some is the medication but I attribute a lot of it to keto. I still have no other symptoms so I am so blessed/lucky! Merry Christmas!

[@1021Jackpot]

My MD didn’t catch this for a year, when she finally did I was in the 500’s range on alkaline phosphate and stage three cirrhosis, I’m on the Ursidol 3X a day, at what point do you consider transplant? Thanks for your video you did a fantastic job explaining this disease!

[@LifeAccordingtoMaria]

Thank you for the comment. I am glad that you are on the URSO. I think it takes a little while to kick in and get started, but your numbers should be going back to the normal levels pretty soon. I have read that there are chances that your liver can recover a bit and that your stage three cirrhosis might actually reverse a little bit and get better. So please don’t give up hope and start thinking about a transplant Put that out of your mind and just try to live the most healthy life. You can possibly live right now the minute I heard that there was issues with my liver. I stopped all alcohol and it’s the best decision I have made. Also try to remain on a healthy diet and stay off of the fast food route, my doctor suggested that I to the Mediterranean diet which involves healthy oils, such as olive oil and plenty of fruits and vegetables and healthy free range meat. So a little anemic so I do take iron along with some B12 and a daily vitamin. Just try to stay positive and do healthy things for yourself each day. Oh, and also make sure to get plenty of rest and also to get fresh air and exercise. I try to walk about 20 to 30 minutes outdoors every day if I can. Best of luck to you and just take it one day at a time

[@bridget3311]

Very helpful. Thank you!!

[@LifeAccordingtoMaria]

Thank you for your kind words! I'm glad I could help you out.

[@natalieanderson8969]

Hi Maria I was diagnosed with PBC 4 years ago yes you need to take care of yourself

[@LifeAccordingtoMaria]

Hugs to you. Hope you are doing well. I am doing the best I can each day. Blessings. 👍🏼🙏

[@gilld44]

I have pbc too diagnosed 8 years ago

[@LifeAccordingtoMaria]

Sorry to hear that. Please know that it is sustainable and not a death sentence. You can still thrive.

[@RanalynnNaipo]

This is exactly fascinating to listen to. Awesome 👏 topic.

[@LifeAccordingtoMaria]

Glad you enjoyed it. I am still learning myself on how to navigate this diagnosis.

[@essiepaz1177]

I was diagnosed with PBC back in November 2023. Want to better my diet. Any tips? And how r you doing lately? Did you lose any more weight? Hope you’re doing well

[@LifeAccordingtoMaria]

I try to do the Mediterranean diet as much a possible and stay away from any fast foods. I have stabilized my weight for now, so now losing weight like I did before. I also try to monitor my energy levels by not taking on too much in any given day. Slow wins the race right now. Thank you for asking and checking in on me. For you the tip is to get off all alcohol. Do what ever you can to preserve that liver. They don't just hand out replacements. :(

[@anniake8578]

Hi Maria I was diagnosed with PBC in 2021. Curious in what you've changed after diagnosis. I stopped drinking any alcohol. I cut out all sugar too. I also went ketovore until just this past Monday now I'm totally carnivore. I interested to see if this way of eating helps my liver. It has dramatically helped my lipid numbers. I also had to have a biopsy bc I'm AMA negative. It was difficult to diagnose. I also had severe itching which I take 25.mg of sertraline along with the urso.❤️ hugs and prayers

[@LifeAccordingtoMaria]

I never smoked so that was not an issues. I drank only going out to a nice dinner or some red wine with pasta (I am half Italian!). I have been non-alcohol for over 700 days now. Doctor has told me that Mediteranean Diet is the best so that is what I do. Low processed sugar, and not fast foods at all. Plenty of seasonal fruits and veggies.

[@mariavanderlugt3670]

Have u gain weight oj the meds

[@anniake8578]

@@LifeAccordingtoMaria no After stopping sugar and being mostly carnivore. I've lost 30 pounds

[@jen_ivypixie81]

I have the same autoimmune disease. I was diagnosed in 2017

[@shirleypreston4998]

Urso is synthetic and not currently from cows or bears

[@backups2542]

I have been losing a lot of weight lately. I'm yet to receive a diagnosis on what is happening. I was told by the doctor it either cancer or celiac. I'd really like to know what is going on in my body

[@LifeAccordingtoMaria]

Sorry to hear this. I know it can be so confusing and worrisome. Please seek a specialist that can do additional blood work to determine what is going on. I think a lot of people don't realize how alarming it can be when you are losing weight and not trying to. It's very scary. Best of luck to you. ❤

[@backups2542]

@@LifeAccordingtoMaria thank you. I had my bloods done just waiting on results. I'm 28 yrs of age and I'm 5,5 in height so it is worrisome when you are down to 6 stone 12. Your video has given me a lot of awareness, when I saw it I was going to skip on clicking it to view but so glad I did. Thank you

[@backups2542]

❤️

[@EmberFfin]

I'm in Canada with ANA (specific to PBC) the last year after 6 years of ANA positive my numbers are going up. loads of symptoms, imaging is not good, PBC is not known very well. I'm so stuck and not getting any help :(

[@LifeAccordingtoMaria]

Are there any liver specialists in Canada, that you can be referred to? Please don't give up. Advocate for yourself. Make calls, and try to get appointments to see specialists. Good luck.

[@EmberFfin]

@@LifeAccordingtoMaria thank you Maria. I found one in Calgary but it's difficult for me to travel. There are some gastro doctors here in my province, I will research them. We moved 6 months ago so it has been a difficult road getting the new GP to understand what is going on, she must refer.I am on one of the bigger groups. Perhaps you are as well.

[@rlcam6175]

In Toronto with diagnosis of PBC, try to get a referral to Dr. Gideon Hershfield at UHN and UofT. He's a liver specialist with extensive PBC knowledge. I am mostly asymptomatic except fatigue and itchy skin and taking Ursodiol

[@rlcam6175]

What part of Canada are you from?

[@mariavanderlugt3670]

WHAT medication do you take? Sodium? You are not on Urso

[@LifeAccordingtoMaria]

I am on Urso, two pills in the morning and one pill at night. Also on baby asperin. Hope this helps. I have no side effects from any of it.

[@debbieflo3927]

Did u itch all over any yellowing of eyes

[@LifeAccordingtoMaria]

No. It was not extreme at all. No pain or anything. Just lousy blood count numbers.

[@mariatahhan38]

Hi Maria.I want to ask you about budesonide?What rhe dose are you taking and how long you should take it?

[@LifeAccordingtoMaria]

I took 3 mg capsules once a day. However, doctor stopped the med cause it was not making any difference to my liver blood work. Theory is I have some components of PSC as well which overlap the PBC and thats why its not doing me much good. Hope this helps with your journey. Blessings

[@mariatahhan38]

@@LifeAccordingtoMaria thank you soo much. I also newly diagnosed with PBC and thinking maybe budesonide will improve my condition much more. Other questions from the start dose was 3 mg and how long you was on it till to consider to stop?

[@LifeAccordingtoMaria]

@@mariatahhan38 If I remember correctly maybe six months until they saw adequate lab results to indicate that it was not pushing my numbers down and not making a difference for me.

[@mariatahhan38]

@@LifeAccordingtoMaria by the way my name is Maria. Thank you for nice video and explanation. The starting dose was the same as Maintenance 3mg?Sorry if I am noisy . About Urodeoxicholic acid the dose calculated according to the weight,the question better to take in split (for example 2 tab morning 2 evening),related to the food: after meals or any time?Or better 4 tab once at bed time?Thsnk you.

[@constance4065]

I have both of these autoimmune diseases. Was diagnosed in 2016 at Stage 2.

[@LifeAccordingtoMaria]

Wow. Sorry to hear it. Please take care of yourself. Try to eat healthy and get fresh air and exercise as much as you can tolerate.

[@margaretmanzer2194]

does anyone have high cholesteral with this PBC?

[@LifeAccordingtoMaria]

I have had high cholesterol for years, prior to coming down with PBC.

[@mrsmozza1739]

Me too; this can be a symptom of PBC so my gastroenterologist prescribed Bezafibrates as apparently they are more suitable than statins @@LifeAccordingtoMaria

[@mariavanderlugt3670]

NO WEIGHT GAIN

[@sisterjosefa]

Did you get the vaxx?

[@LifeAccordingtoMaria]

I had the high liver enzymes starting to elevate years before COVID. They were suspecting it might have been due to Herpes Simplex virus which can reactivate in the body after being dormant for years.