I have cirrhosis. Surgeon saw it in CT scan & really saw it during hernia surgery so no doubt about it. But Liver function normal at this point say tests. I want to find out the underlying cause so it can be addressed. I do not want to inadvertently cause any more damage to my liver with inattentive eating/drinking habits. But the gastroenterologist I saw is not one bit concerned & said I have ZERO food restrictions. That seems like terrible advice! Does he just want me to irresponsibly live it up until my liver actually fails! I was counting on answers and direction from him & feel a lost now. I know many of you here are suffering so much & I feel selfish looking for advice when I'm still functionally ok. But I have learned a lot from reading this forum and I'm hoping you'll have a bit of advice to share on what you would do if you were in my shoes. Thank you for all you've already shared. Im so grateful for all I've learned from you all. Big thanks for your thoughtful replies!
Doc says: "Cirrhosis? Yes. Food restri... - British Liver Trust
Doc says: "Cirrhosis? Yes. Food restrictions? No." So confused. Advice?
That is odd. Did they check liver enzymes with bloodwork ? AST, ALT and ALP?
I’m not sure if a surgeon can diagnose you with cirrhosis if it was not their area of expertise or they weren’t evaluating that.? What kind of surgeon was it ?
Did they order more bloodwork or tests ? I don’t know what diet would be recommended without knowing the cause Do you have symptoms ? Low sodium and avoid alcohol are standard but besides that might vary based on the etiology.
Thank you for replying, Greengal 314.
It was a hernia surgeon. She gave me a copy of the picture of my liver she took with the robotic camera. You can plainly see it is covered in nodules. Looks more like a tongue covered in huge agitated tastebuds than a smooth liver. Haha. Gastroenterologist agrees with diagnosis.
AST & ALT done. Im not seeing ALP. My hep panel was inconclusive so I asked the gastro dr if I needed to retest for that but he wanted to see the actual result first. (My PCP did the test & that particular panel hadn't been sent to the gastroenterologist yet). Still waiting to hear back on that.
The gastro doc ordered zero additional bloodwork. I told him it was very important to me to find out the cause. He scheduled me for a colonoscopy & an upper GI - neither of which are going to tell us anything about my liver. He wants to do those because Im intermittently nauseous & other weird random things that he says arent connected to the liver. Other weird "symptoms" include bloating, rapid, unexplained weight loss (more than even normal for my substantially decreased appetite)(25 pounds in a month), intense itching especially on the inner arch of my left foot, intermittent loose bowels for @ 2 months now, cant sleep more than about 3 hours at a time but exhausted frequently. Other stuff but those are highlights.
Hey CFish,
An egd and colonoscopy can prob help pinpoint or rule out other causes for the digestive problems. The egd can also check for varices which are sometimes found as a result of liver disease.
Nausea, bloating, loose bowels and weight loss are all symptoms of liver disease. They are symptoms of other things too though
I’d stop drinking all alcohol and keep sodium low until you get more information.
I hope this helps. 🤷♀️🙂
I don't drink but I've been pretty undisciplined with what I eat so am taking the advice here and changing that. It is a real adjustment.
I didn't know that the upper GI exam could check for varices (still learning about what that is) so thanks for the reply!
My hepatologist and nurse said no added salt but that's not the same as 'low sodium'.
Maybe they were trying to make it easy.? I don’t know 🤷♀️
It’s about the sodium to my knowledge Salt is the most common form of it. Sodium chloride. Soy sauce is super high in sodium and I would stay clear from that. I don’t know. You can ask your doc for clarification if you want.
My step-grandpa (who was like dad to me) had chronic kidney failure so I learned lots about salt/sodium intake and am so grateful for that now. Wish I wouldve adopted more of that lifestyle earlier but am being good now. I'm so glad to have Penzey's spices for flavoring without salt!
The nutritionist I saw "restricted" me to 2000 mg of sodium a day. That's basically the FDA recommendation for all adults so I didnt really know what to make of that either.
I feel like I need to start all over again with a hepatologist and a liver nutritionist specifically. Its so frustrating to me that I didnt get to start there. Hope I can get there but I will probably have to really advocate for myself with my PCP and then with my insurance company. Ugh.
I don’t think there is anything else besides the alcohol and sodium, unless your muscle/weight had decreased in which you’d need extra protein to rebuild them. Foods rich in folate, protein, vitamin b/c/d, and iron are all good.
I had some digestive issues before so that was a little difficult, but those have resolved and my weight/muscle strength are great !
Cool about the Penney’s Spices.
I’ve been trying some new recipes. It’s been fun! I like to cook for family and friends.
If you have any bloating or swelling, I’d try extra to limit sodium - while you’re waiting on additional tests and information.
Take care 🙂
have you had an account here before?
Exactly what I was thinking!!!!!
I’m pretty sure we have the same person in mind!
I did an eye roll straight away!! Apologies to this person if you're not who we think you are 🤣
I haven't had an account here before. I was incidentally diagnosed late February when I had hernia surgery & officially diagnosed week before last. Its all new to me and pretty confusing because my liver looks awful (the surgeon gave me color photos of it) but still functions in the high normal but normal range & my gastro dr didnt even tell me to stop drinking so Im a little scared I dont hv a good doc. I dont drink but thats not the point.
I came here for advice and to learn what to expect as things go along and maybe help share my experiences and what I learn that could maybe help someone else.
I know this is going to be a long road. I have found a lot of value on this board in a short amount of time. I dont want to start getting harassed or my posts made suspect in a case of mistaken identity. I'm me and not some reincarnate so I'll accept your apology and move on. Thanks
No worries, we've had someone with a very similar post to yours so hence the question.If you don't mind me asking, where was your hernia? I'm surprised that the surgeon did that much poking around because they don't usually bother with anything that's not their specialism. If you have a gastro consultant you're not happy with then it might be worth asking for a 2nd opinion or speak with PALS .
I'm very surprised they didn't tell you to stop drinking although if you've told them you don't drink then maybe they didn't feel it relevant. However it's not just about booze, you should be given proper dietary advice too as we have really specific requirements.
If your bloods are doing fine then that is the key but you can always request them to be re-done.
All the best.
I dont mind. We're all on here sharing relevant private medical info to begin with so.. It was a ventral hernia that had poked thru the abdominal wall. Not fun. She went in laparoscopically in a robot assisted surgery so tiny cameras where in my abdomen & thats how I ended up w/ pictures of my liver. She was on the look out anyway bc my liver looked cirrhotic to the techs who did my CT scan. They found an umbillical hernia that hadnt shown up in the CT scan while they were in there.
I know I'm lucky to have had a surgeon who cared enough to look & tell me to go get it checked out. I wish my luck had continued with a good liver dr but we dont really have them in my area and I get low priority for that kind of referral since my liver tests are in normal range. I definitely dont want to take a spot from someone worse off but I really want to learn all I can do to stop the cirrhosis in its tracks and I dont want to damage my liver out of ignorance.
I had to google "PALS" (Im in US) but I think I will mention all this to my nurse practitioner and hopefully get a referral to someone a bit more experienced in the liver department! Until then, what I've learned from you all on these boards who have so much personal experience & then researched on my own following that guidance has been incredibly helpful! I'd be pretty scared & lost without it I think.
Ohhhh you're in the US! That explains a lot, the NHS are a pain on the arse sometimes here and can't be proactive because of protocol.Main thing is, eat well, exercise and no booze x
Just eat normally. Normal food, normal portion sizes, normal everything. Imposing restricted diets when you don't need to will end up doing more harm than good. When you need to restrict, they'll tell you. The only thing necessary to stop if you have cirrhosis is alchohol.
It doesnt really matter what others have been told. Everyone's circumstances are different. What may be right for one may not be for others at that particular time in their disease progression.
Thanks for replying. I have met with a nutritionist now but she specializes in diabetes care not liver. It's still helpful though because its helping me learn what "normal" looks like which I'm embarrassed to say I knew in theory but never practiced. She said I need 110 grams of protein a day and had me start Ensure Complete. Ive gained 5 pounds in about a week which seems not normal. And even tho dr said no food restrictions he also said I needed to lose weight so its a confusing balancing act of getting enough protein and losing weight when my body seems to overreact to what I eat.
I guess I'll look for a thread on this forum for tips on how to increase protein while reducing to healthy weight.
Thanks again for replying.
For me the trick was to eat sensibly and use more calories in a day than i took in. Protein is a good way of forming a good balance. Especially lean protein like white meat, I.e, chicken, and also fish. Plenty of other things provide protein too, porridge, beans, eggs and many others. You can then bulk out meals with veggies which don't come with a high calorie load.Keeping the calorie count under control is easier if you avoid stuff that's fried or say coated in breadcrumbs. It's not a complete no no, its just those things tend to have higher calories than the uncoated stuff. For example a fish in breadcrumbs could be 300 calories whereas a fish on its own between 100 and 150. So that's a relatively easy way of getting the protein and keep the calorie count down.
To help counter balance the calories you may take in, try and fit in a walk everyday if you can. An hours walk can use up 400-500 calories depending on how much work your body needs to do. It's much easier to use walking than other forms of exercise as you can sustain it for longer and you're less likely to need to re-energise straight after like you may do if you did say running or cycling. You also don't necessarilly need to do it all in one go either.
Having said that, you don't need to go mad with anything. If you find you can get a daily calorie deficiet of between 250 and 500 calories a day then you can see I reduction of about 1 to 2 lbs per week. Usually more in the early stages and that is a relatively simple task to do without making drastic diet changes. Thats what I managed anyway.
Good luck
sounds like sound advice to me! Thanks! This is what I've been doing since I recovered from the hernia surgery but chicken hits me very hard right now for reasons I dont really understand so its been a lot of eggs, Ensure Complete (which I think has more sugar than my body likes right now), hummus, salmon (which I dont really like that much) but Im still having trouble hittting 110 grams a day. On average & without much trying I walk about 2-3 miles a day. For a scary stretch of about 3 weeks I was losing about a pound a day. That's when the nutrionist had me start Ensure Complete. I gained 5 pounds that week. This is why Im a bit lost. Losing and gaining so fast like that doesnt seem normal either way. I feel like Goldilocks and don't know what to do next. I cant keep gaining 5 pounds a week.
Hello,
Have you seen a Hepatologist?
A Hepatologist is really the Dr. You want to see. They specialize in all different liver disease.
I have cirrhosis alcohol induced, I was decompensated when I was first diagnosed 6/13/2019. I haven’t had a drink since. I was put on a sodium restricted diet right away, it’s tough to do and adjust but I still follow, though my hepatologist said I can liberalize my diet from time to time. I’m now compensated and doing well.
Sorry I’m rambling with cirrhosis a healthy diet is really a must, a liver damaged has a more difficult digesting/ absorbing nutrients. I was severely malnourished and severe muscle wasting.
So again I hope you can get to a Hepatologist.
Sending Healing 🙏
Susan
Not sure what happened to my earlier reply. I mustve tapped the wrong thing. But I wanted to thank you for your post & good thoughts. I'm encouraged by what you said about getting to compensated from decompensated and, if its ok to ask, did you do that thru diet & no alcohol only?
Im going to try very hard to try to get a referral to a hepatologist. Thanks for the encouragement!
Hello,
Yes I totally stopped alcohol I had to go by ambulance to ER. That was 6/13/2019. So my sobriety date is 6/14/2019. It took me hitting rock bottom to stop. I had tried many times thru the years . AA , counseling, reading, trying to cut down, cut back, I was sober for close to 4 mos, over 10 years ago. I wasn’t happy then not drinking. Well I started again and it progressed horribly I worked full time right up until 2 mos before I ended up in hospital for 16 days. I started with a support/addiction group at a hospital, still going to all my meetings etc. I have even spoke on zoo. With a room full of Dr.s and public speaking event at the hospital/addiction awareness. So not bragging! But I got to the point I was drinking when I got up (to sick to function without it) sipped all day from a thermos at work , and drank till I went to bed.
It can be done! It is life or death .
So Number 1 No alcohol Go to your appointments, blood work, ultrasound etc. And yup ,eat healthy, By the Gods Grace, and hard work, I’m here today. I hope I don’t sound preachy, because I know first hand how HARD it is to quit something that makes you feel so good…until it doesn’t. Booze was the centerpiece of my life for 30 years, with Progression thru that time. My addiction took over at the point I was at, it was not a choice to take my wine my body craved it. It was medicine.
I am so happy you responded to me.🤗
Contact me anytime
Healing Healthy, Calming prayers,
Susan
I
Hi, there is really helpful information and guides on the British Liver Trust website. I found it really useful for my husband and good idea to rest your liver from alcohol either way. The liver is your body’s factory and it the most amazing part of your body and it can recover if you respect it and it’s not too late. 😊
The liver is so amazing! I had little idea and have learned so much from this board. Thanks to all!
Hi,
You have STOP alcohol completely, not take a “rest” from booze. I’m not being flip” a damaged liver cannot handle any alcohol. As my hepatologist told me if I ever started drinking again “all the good I have done” would come undone and it would be worse.
🙏
Also be very careful of any medication, paracetamol is toxic to your liver as are many medications, check before taking anything as your Doctor should change any in appropriate meds. For instance if you take omeprazole you may be changed to famotidine or for chronic pain sometimes nefopam best discussed with your consultant. So be to very careful of over the counter medication and vitamins only take what Hepatology say you can.. However Vitamin B strong and Thiamine or generally given as these help with energy and fatigue for liver disease and excess will go through the body. Eating little and often as your liver may not be able to store energy and that will result in muscle wasting if the damage is bad enough. This is because even when we sleep your body will need energy to function full stop. So if your liver can’t store it your body will steal it from your muscles once any fat stores are gone, hence wasting. You need to see dietitian as they will evaluate and monitor your muscle mass and strength, they will accordingly give you good advice about what to eat and having a late night meal/snack to help while you sleep.
Do push to get to see the right Doctors, I speak from experience, do not accept being “fobbed”off. My husband was diagnosed with stage 4 cirrhosis and needs a transplant after 18 months of being sent for blood test every time we questioned or phoned about a new symptom. Finally our family doctor saw one result and took action arranged an urgent CT, then phoned the consultant and since we have been under Birmingham. Sorry didn’t mean to go on but everyone is different and has their story there is nearly always more. So my advice is you need to find out where exactly you are at, wishing you all the best x
So sorry to hear it. It’s not easy being diagnosed with cirrhosis. Number one rule is to abstain from alcohol (doesn’t matter if it’s non alcohol related or alcohol related cirrhosis) and a healthy diet is vital! No packaged, or processed food etc. Make a dietitian appointment and structure your food around that.
Not sure what planet that person you were talking to hopped off. It is really terrible advice and misleading. I wouldn’t leave that go. Perhaps talk to that person again to clarify exactly what they mean and reasoning behind it.
Thanks. Ive been avoiding packaged/processed foods like the plague. Its been a big change for me bc I like the convenience of "convenience foods" and ate them all the time. Vegetables not so much but I'm working on that.
If by the person from the other planet you mean the one that told me zero food restrictions.... that was the gastroenterologist himself. Hence my confusion. If cirrhosis were only suspected & he thought I was overreacting, then maybe that wouldve been ok but theres no doubt I have it so "no food restrictions" was the last thing I expected to hear. I asked again to make sure I heard him right!
I’m sorry if you feel i miss lead this is the first time I have been on this kind of forum and I think the last as a cannot take to aggressive way people word things. I did mean well and am very sorry to have upset so many with what I thought was good advice not to drink which is all I was trying to say obviously I am not capable of putting things in away that is acceptable. I was recommended to use this for support and assistance I didn’t realise that it could also distort and destroy I had faith in humanity and considered that anyone using this had a story and was trying to be constructive and considerate as i do not know everything and can only speak from experience and it has not been a good one. So thank you I now am clear on what not to say and I really do appreciate your help.
Hello lavender ...You havent said anything wrong...
I think chick_atee was referring to the original post that was put on......not yourself......
Don't worry......some folk answer in a very straight forward manner.thats just there manner.. but thats the nature of the forum.. every one will have there own perspective.it takes a while to gather how the forum works.
But don't stop posting,we are all trying to help one another.....but we each have our own way I suppose. You need to reply to the original thread. Hope that helps.
My best. Chris
Yes! Thanks to redpoint72 for saying this. I took chick_atee's comment to be referring to my gastroenterologist not you or any other poster. Everyone's posts have been educational and encouraging and I'm grateful so please don't stop.
I will apologize in advance for anything I say on these boards if I come across to blunt or aggressive. Sometimes things get "lost in translation" on boards so we all need a bit of grace extended towards us I think anyway 
Thanks!
You haven't come across as aggressive at all....not in the slightest.I do agree though that well meant comments can get lost in translation.
My best.Chris
Thank you so much for your kind words and guidance, I am very grateful and appreciate. This is such a rollercoaster of a ride and no one chooses it. xx
Lavender,I agree,no one chooses it..But hey,we are all in the same boat....one way or another, liver wise, and we are all here for support, advice etc.......someone to share what maybe a terrible situation.
Some really great folk on here.....
Keep asking questions love.....someone will always help you out,at some point.
Take care.
Chris
you really need a fibroscan/ultrasound to confirm level of cirrhosis
i am going to ask about that. My two biggest things were what is causing this & what is the level of damage. The gastroenterologist said the cause didnt really matter bc the treatment was pretty much the same - then said based on my labs I would be low on the scale - then turned around and said I dont need to observe any food restrictions. Now that I put that all in one sentence, I realize how wacky that sounds. And he didn't even have my hep panel results & my antibody testing was inconclusive or non-reactive or some such. I need to be making some phone calls today to get everything sorted! Thanks!
Hi again, read thru all your posts again, my symptoms have been exactly the same.
Alcohol is out eg don’t have any from now on.
When your liver is sick, regardless of the cause, certain things have to be restricted.
No alcohol
Don’t take any supplements as liver has trouble processing them
Reduce protein intake of red meat in case of excess ammonia.
Consider any long time medications you have been on as a possible cause,
Eg arthritis drugs , anti inflammatory drugs.
There is no “magical” fix and progress is measured in months not weeks, to feel better.
Continue seeking tests and medical specialists, as there are some rarer causes of liver disease
