PBC AND NAFLD

[Tramezzini]

HI

what did your DR specialist say about PBC AND NAFL? there is not much about this. I have both.

One specialist said eat what you want, other said no dairy, no processed food etc

[Jlruggie]

I’d like to know too. I’ve only read what not to have:

Alcohol

Processed foods

Salt

High fat

Red meat

Stress

[Dinasmom]

My doctor said nothing. So I did my own research. I’m a RN and well familiar with the lack of nutrition training doctors receive. So four years ago after researching all I could, I adopted a whole food plant based diet and eliminated processed food and sugar. The result? I cured my NAFLD and reversed my PBC a full stage. Now my doc says “I wish all my patients did what you are doing.” My response? I wish you’d tell them to eat that way.”

[Tramezzini in reply to Dinasmom]

wow!

Can we connect through messages if you are not comfortable and don’t mind telling me what you ate and if you took any supplements?

How did they know PBC and Nafl was reversed? Do you take medication?

[Dinasmom in reply to Tramezzini]

Absolutely. I’d love to help!

They knew the NAFLD was cured by a fibroscan and ultrasound. NAFLD is linked to being overweight which I was at diagnosis. After I lost 42 pounds—-poof, it was gone. The fibroscans, taken four years apart, actually put me back a stage with the PBC—-from stage 1 to stage 0. Weight probably influenced that as well but I’m sure an anti inflammatory diet did as well. The best part of my hard work is I have absolutely no symptoms of PBC at all. I have tons of energy, I walk 3-4 brisk miles daily. No itching. Blood work all totally normal now. Think positive. There is much we can do to control this disease, especially if caught early.

Yes, I take URSO. I also take krill oil daily

[Tramezzini in reply to Dinasmom]

thank you! So you go for a plant based diet? No carbs? Do you eat it raw or cook it with olive oil and salt other seasonings ?

Wonderful news!😊 so happy for you

[Dinasmom in reply to Tramezzini]

I eat mostly vegetarian with a mix of cooked and raw—-but the raw is mostly salads. I use avocado oil when I cook. I was always a meat lover so that was hard to accomplish but I do allow myself a small serving of meat once a week. My typical meat source is either a small bit of chicken or venison. I hope that helps!

[M0n1]

My doctor has not given much advice other than I have to lose weight. I am not severely obese but she said that losing 25-30 LB would help with fatty liver and cut down a bit on Ursodiol.

I gave up the occasional glass of wine after diagnosis a year and a half ago. Recently I cut off all sugar, bread and starchy foods. Started to lose weight and my liver function tests all came back in normal range for the first time in years.

[Tramezzini in reply to M0n1]

is urdisol making NAFL harder to get rid off?

I am not over weight now either…

[Kakey]

Diet and exercise are the treatment for NAFLD and Urso is the treatment for PBC. They are separate diseases, but there is no conflict, you can treat both.

[Zelda5]

I think also certain medications can play a role. A friend's son was diagnosed with fatty liver when he was like 12 and I think the medicine he was on may have been a contributing factor.

[Wilderswimmer]

Hi I was told I had NAFLD 15 years ago. I haven't eaten meat since 1972 and no alcohol since 1979. My weight was right in the middle of normal range. So I was a bit surprised that I could have a fatty liver. I cut right down on dairy products. But a few months ago I had a fibroscan which showed the NAFLD is now mild to moderate. It seems that a condition called Bile Acid Malabsorption might be a reason for the state of my liver. If you have mild BAM you may well not know it as doctors rarely spot it and they and you might have kept attributing the symptoms to other causes - it could be worth looking into. Would mention I have had the AMA M2 up to 1:1280 constantly since 1998, but (according to lastest scan) there is still no scarring of the liver. Having been told way back in 1998 that my liver would go within a few years from PBC, but PBC not yet having damaged my liver, I am very keen not to end up with a wrecked liver through NAFLD! My doctors have never given me any advice whatsoever about NALFD, it's really poor how they just write it off as inevitable.

[Tramezzini in reply to Wilderswimmer]

nice to hear all goes well.

You eat a specific diet? Or just staying away from dairy and alcohol?

Are you on Urso? I hope i get 50 years min off my liver before and if it starts scarring as i am very young and have small children

It is all confusing

[Wilderswimmer in reply to Tramezzini]

Hi

Kudos to you for being such a caring parent to your kids. I've never seen any evidence that PBC is affected by diet (other than in the sense that our general health is affected by diet). Seems to be an awful lot of proof that a plant based diet, no booze, will help our health generally.

Specifically I know that cutting out dairy milk, yoghurt and cream made some improvement for me, because I used to have fat deposits in three places on my face, nothing shifted them. But after I cut down the dairy drastically they slowly reduced in size and one disappeared altogether. That's a visible help that I can see so and now after this latest scan I'm cutting out the dairy cheese. Oat milk is really good, soya yoghurt is fine, oat cream is fine... but the plant 'cheese' is just rubbish. On the other hand, I want to keep my liver.

I've had the AMA M2 since 1998 but LFTs always normal and still no scarring of the liver at all. But from what I've read, the AMA M2 antibody doesn't always destroy the bile ducts, or maybe in some people the damage is a very very slow and they die of other things first. There are also reports of the AMA M2 being associated with NALFD or with sarcoidosis. My mother had sarcoidosis (which did eventually destroy her liver but she made it to 77 and raised LFTs only in the last 6 months of her life). So I'm not sure what I have. All I know for sure is that my health was wrecked at 19 after a 'mystery virus'. I have crippling 'fatigue', and have Primary Immune Deficiency. I was getting several autoimmune-type problems and that's how I got tested for autoantibodies and the AMA M2 was found. I also had low level lupus antibodies. But the lupus symptoms went away. Since then I've had hyperthryoid, but was lucky and PTU knocked it on the head, I didn't need surgery and it (fingers crossed) hasn't come back.

Like you say it is all very confusing. I find PubMed very good. I've literally had to diagnose every illness myself, I identified that I probably had PID and later that I must have hyperthryroid and had to force the GPs to do tests which confirmed that in both cases. Latest one - Bile Acid Malabsorption - most doctors here miss that too. (My former GPs could basically could spot if someone was pregnant or already dead, otherwise, you're on your own).

[Tramezzini in reply to Wilderswimmer]

hello

Thanks so much for sharing your story

Do you mind sharing the article? For NAFL and AMA , that would be a dream if that wss the case

[Wilderswimmer in reply to Tramezzini]

Hi - here's one: Differential characteristics of AMA-M2 autoantibody in primary biliary cirrhosis and the non-PBC patient pubmed.ncbi.nlm.nih.gov/261... " Conclusion: Although detection of serum AMA-M2 is an important feature of PBC diagnostic testing, there is a high ratio of serum AMA-M2 detected in patients with drug-induced liver injury, hepatitis B, C and E, alcoholic liver disease, non-alcoholic fatty liver, and primary hepatic carcinoma. The AMA-M2 positive non-PBC patients still require close observation to watch for future development of PBC." Is it through the AMA M2 antibody you were diagnosed with PBC or was it due to LFTs or fibroscan?

I've just been reading a lot of other newish articles and it seems like Turquoise and T's naturopath are spot on the ball There are several studies / reports re how bile acids influence several types of liver disease and how in turn bile acids are determined by the bacteria in our guts. I'm going to look into the cost of getting a gut microbiome report.

[Wilderswimmer in reply to Tramezzini]

These are interesting too: Bile acids contribute to the development of non-alcoholic steatohepatitis in mice. JHEP Reports 2022. doi.org/10.1016/j.jhepr.202... 'This study clearly demonstrates that the alterations of enterohepatic bile acids significantly contribute to the development of non-alcoholic steatohepatitis in relevant preclinical models'...and 'Dietary correction of the BA [bile acid] profile protected from NASH'. Then there's this: Biological tuners to reshape the bile acid pool for therapeutic purposes in non-alcoholic fatty liver disease. Talks about how in mice changing bacteria in the gut can fight NAFLD. Also says they are now breeding mice who process bile acids just like humans so studies can be more closely relevant. I feel a bit sorry for the mice, at least they could try giving them alcoholic fatty liver disease from time to time so the poor things have a bit of fun.

[Tramezzini in reply to Wilderswimmer]

i take Double Strenght probiotics

Omega3 and milk thistle and Ursofalk

All approved by my specialist

But he said it wont make much change 🤷‍♀️ so i dont know…

Seems like processed food like salami and drinking dairy as in milkshakes etc , sugar is the big bad wolf in the game

[Ancolie in reply to Wilderswimmer]

Thank you for the link, very interresting !

[Wilderswimmer in reply to Tramezzini]

Sorry forgot to say that no, I'm not on Urso, I took it for about three years over a decade ago but not since. My docs here in the UK won't prescribe it, they say there is no need to take it before you start to get abnormal LFTs. It does concern me that Urso could be helping me but I can't get it.