First time posting...

[jax1984]

Newly diagnosed with liver disease from hepatologist in December. I am currently in compensated stage of cirrhosis from NASH. Don't really know for sure how long I've had it. I just recently got over my anger with my former primary doctor, who I saw regularly twice a year for 12+ years. When I looked back on my labs, liver readings had been elevated for most of that time. I also kept mentioning to her that I was extremely fatigued, but she never connected the dots. I never had the chance to try to reverse my condition because I didn't know I had a condition. And now it is too late. Please, please tell your family and friends to insist on an ultrasound at the very least should they have elevated liver enzymes and/or any other unusual symptom.

So, I am vegan now and following diet guidelines provided here and from other material I've read. I exercise daily and have lost quite a bit of weight. Hopefully I will be in the 70% of folks who can live up to 10 years! I have two diet related questions that I found conflicting info on, so if someone can assist I would be grateful.

1. Is it okay to use red and white wine vinegar with olive oil to make my salad dressings, which I use quite frequently. (My hepatologist approved)

2. I am allowed one cheat day every 2 months (hepatologist approved) where I can eat whatever I want within reason. I am very, very strict with my diet otherwise and never stray. Does anyone here ever have a cheat day or meal? And if so, how often?

Thanks for having this site--it has been a blessing to read and be encouraged by others!!

[nash2 Partner]

Hi Jax

Sadly there are many of us who share that anger but the important thing is that you are compensated and working at a supportive lifestyle. Given a chance, there is every reason to believe that your liver will improve some and that 10 year statistic doesn't really apply to people who take proper care of their liver. Also, any kind of vinegar is fine in your salad.

[jax1984 in reply to nash2]

Thank you for the response/encouragement. Any opinion on having a cheat day/meal once every two months?

[kensimmons in reply to jax1984]

No opinion on the cheat meal, but I think NASH2 point about the 10 years is spot on. Remember that is average and I have heard a doctor say he has all kinds of patients but two types really stand out.

One when given whatever the diagnosis is (NAFLD, Hepatitis A, etc.) will keep going on, almost casual about it. Thinking, well, I'll worry about it when it gets worse. Or maybe they have an alcohol problem and can't quit.

And then there are the opposites, they stop the bad behavior (or start taking medicine for the Hepatitis) and they can sometimes live a very normal life for 20 years, even more. Now if you average the two it will work out to 10 years or so.

Also sometime people are diagnosed at age 78 or so. They don't live 10 years because not many people live to 88. They would have died of something else at 83 (or whatever) anyway. So that also drags the average number of years down.

Point being, 10 can certainly mean 20 or more for some patients. Not all of course, but some.

Other liver doctors say something I like to hear "My goal is to keep you alive long enough for you do die from something else. You may die with liver disease, but let's make sure you don't die because of liver disease". That is become more and more realistic as more research takes place.

Good luck, chin up!

[Alterity]

Hello, I'm the one that has last 21 years after saying I had the worst liver they had ever seen in surgery in 2001 and was told I was in Stage 4 Cirrhosis. It's not that I won't worry about it until it gets worst, believe me I have had some bad crashing days and days in the ER with no help, but I take my life like I'm supposed to. I'm living it. If I want to die, I'd get in my car and drive around for a while and if I didn't pay attention, I'd be dead in a car accident. Same here, if you don't pay attention to your liver and treat it right you'd be dead. My Dr. has said a glass of wine occasionally could be benefitable, I might have one glass a month. So I'm sure it can be in your dressing. Having NASH does not mean you can't live your life, it means to listen to your body. Rest when your exhausted. I sleep most the time 9 hours. I have worked high stress jobs for the last 20 years with 12 and 14 hour days, but I need to watch it and know I need to rest big time after or I'll crash. I don't eat red meat except once in very great while if I just want to taste some beef, maybe twice a year when I know there is no stress in my life. To look at me you would not know anything was wrong with me, but like I said, I've lived with this for 21 years, pains in the side, feeling like I'm having a heart attack many times because the liver shuts down and shuts down my heart. I've Argued with Drs and won't take their meds that go through my liver, only meds that go through my kidneys because they shut me down. I hate it that Heart Dr.s don't know what NASH is. My Dr. finally looked it up. I'm a fighter and I do my own homework and investigations. Don't stop living. And stage 4 can be cured, I'm down to stage 3. I weighted 283 in 2001. I weight 210 now and would love to get another 60 pounds off, but it is so hard. Good luck to everyone on here, but live the best you can!

[nash2 Partner]

Hi Jax

I see you have gotten some really good advice from some real experts above so to answer your question about "cheats". Don't think about it that way. It isn't some terrible thing that you have to go hide in the woods to do or be ashamed of. We all struggle with the memory of things we love that we know are not good for us now that we are defending our liver. You know that a single indulgence doesn't do much, unless it does. You know there is some price to pay for asking your liver to suddenly manage something that it hasn't had to lately. If it has the capacity to do it then no harm. If it is more fragile there will be a setback and you have to deal with that. It is a risk/reward balance but it is a choice not a cheat. Hope that helps.

Wayne

[BU2B]

You got this! You'll have good days and bad days AND you have found one of the best user resources on the web! This site and these folks are just amazing. All my best

[jax1984 in reply to BU2B]

Thank you everyone for the support here. Great advice and encouragement. I remain optimistic and grateful...

[Schmoopsiesgma]

Hi its my first time posting as well. I too felt the anger when I was diagnosed. Fibroscore of F4. After a lot of researching I'm amazed that not one of my doctors thought jeeze we should check the liver. I had other risk factors besides obesity that would put me at risk for NAFLD. And mine was found due to getting tests for something else. That doctor then referred me to a GI doctor. Thats our healthcare sytem at its finest. I am currently on low carb, low fat way of eating and I have lost 11 pounds since diagnosed on 1/26/2022. Had to request to see a dietician after diagnosis all the nurse from the Dr. Office told me was lose weight ,low carb. I was like "I need more info than that , this is my liver health and my life we are talking about." That being said I almost have a phobia of "cheat foods" now , I look at them and think cirrhosis and suddenly they dont sound good anymore. Stick with the liver friendly foods. After my diagnoses I've become very vocal with family stressing a healthy eating plan. Dont want them to get to this stage. Good luck to you.

[jax1984 in reply to Schmoopsiesgma]

Thanks Schmoopsiesgma! I agree that the doctors don't give much advice on diet, so thank God for sites like this. My only grain is oats (oatmeal, oat flour, oat milk). Main protein is from lentils, beans, chickpeas. I will also have salmon and eggs on occasion, but try to remain mostly vegan. Being able to buy pasta made from lentils and chickpeas is awesome, too. I use pure stevia as sweetener. And of course, lots of fresh veggies and fruits and walnuts and no salt natural nut butters which I spread on homemade oat flatbread for something quick. I also make homemade chickpea crackers to snack on. I have no problem living with this diet as I enjoy it and had included these foods prior to being diagnosed, but it is very hard for a lot of folks to go vegan. I think for me currently that once every 2 months to be able to also enjoy an old recipe is like Wayne said, a choice which one has to weigh knowing risk and reward. Also, I found that my socializing events often revolved around food, not unlike so many others, so I am working on changing that too, planning events not centered on meeting to eat. This is a lifestyle change for sure and glad to hear you are emphasizing healthy eating with the family. My best to you, too,

[AllHis in reply to jax1984]

Every Occasion has revolved around food! My whole entire life. I live in Cincinnati and I am a big Bengals fan. I keep saying I’m a football fan, but what I really am is a “tailgating fan.”

I’ve grown up in a very loving family with fond memories of grandma’s home cooking. She had that beautiful talent to bringing everything to the table hot. Big sit down dinners. Everyone lending a hand. Children learning how to cook at a very young age…

Now add the Cincinnati style chili… We don’t know how to survive in Cincinnati without it. Lol!

Sorry, let me get to the point. I don’t think we have to avoid food at gatherings. I think, for me, I had to accept the challenge. Find the beautiful balance. Believe me, this is not easy! I’m not sugarcoating it! But I do have a passion to cook and entertain and be around family. ( I remember one occasion, my son’s girlfriend commenting that I was making dinner again at home. She was in disbelief that I made dinner almost every night. That was odd to her.)

Five years ago or so, I had to give up alcohol because of the medications I was on. I was trying to better my health. I was never any more than a social drinker, but I felt like just that one act of not drinking excluded me from many parties. Everybody wants you to participate, and they are looking at you for explanation of why you’re not partaking of their favorite drink.

Now, I still want to host parties. I want to rally around the big Bengals game (AND WIN!) Forgive me, but I see food in my future! Chance to try out new recipes!

[jax1984 in reply to AllHis]

Good for you. I'm glad you found a balance that works. But for me, I need to change behavior patterns while still enjoying my friends and family. And they totally understand and are supportive, and I'm so grateful. I don't feel deprived at all. It's a new normal but a journey that I'm finding rewarding even with its challenges. And one last thing--I was born and raised in Ohio, so GO BENGALS!

[ThyroidDeb in reply to AllHis]

Sounds great, you should publish a cookbook!

[FinnJessie in reply to Schmoopsiesgma]

Sounds so familiar! My primary physician told me for the past 4 years that my liver tests were high and I had fatty liver, but just “watch my diet”. Recently, I have been diagnosed with NASH after becoming so ill and fatigued. I am now with a very aggressive liver doctor that ran so many tests, including some genetic tests, which shows a genetic component to liver disease.There is a reason this disease is called a silent killer! Too many doctors do not stress the importance of eating healthy.! The Mediterranean Diet is what I follow, most common one recommended for a healthy liver.

I also take the appropriate vitamins.

Big pharma doesnt make $$$ on this illness, so we’re on our own & most people don’t know where to even turn. One has to research top sites and see a gastroenterologist as soon as you hear “fatty liver disease”.

[jax1984 in reply to FinnJessie]

Thanks for your response. Did not know there could be a genetic connection. Interesting. You do feel like you are on your own in the beginning. I'm thankful for this site and the info/encouragement from others here. Hope you are doing well.

[AllHis]

I love your 1st post. Together we’ve got this! 😊