Vegan or Mediterranean diet....
Cook book suggestion please
ALSO......exercise.....I am so exhausted most of the time, plus have to take XIFAXAN to help with the brain problem....... foggy thinking, memory loss, etc. Need to work on building up my energy level but seem to be too weak.
Thanks for any suggestions. I just feel like I am slowly slipping away.
We don't have cook books because everyone is different but here are general guidelines that may help fattyliverfoundation.org/na...
I read a book called Skinny Liver by Kristen Kirkpatrick that is informative and has a lot of recipes in it along with a lot of info on NAFLD and NASH.
Ordered & just received. Have not read it, as yet however it looks very helpful. Thanks for suggestion.
I also have the same problem with exercise. I am desperate to build up my strength, but am just too weak to make any progress at all. Sometimes, my problems feel better for a while -- say, a month. I will gradually build up a little strength. Then, I will relapse and am bedridden for days on end again. I have to start all over.
I have been struggling with this for a decade now. I am constantly trying to get some of my strength back, and it never works. In my case, my problems may be worse than yours -- my NASH has progressed to cirrhosis, and I had an incident of ruptured varices that came very close to killing me.
It makes me so angry when a physician or friend says I "need to get more exercise." Yes, I know I need more exercise. Plus, I am desperate to get back to living my life -- gardening, swimming, hiking. I *want* more exercise. What do I need to do to get it? No one knows.
Rosa, I have Stage 4 NASH which I guess it's the final stage. I am at the stage where my cirrhosis affects my head, so I am on the expensive drug XIFAXAN which my out of pocket cost is approx. $ 2,200.00 for three months supply. This drug helps the Liver better process the toxins that is causing the head problem, which is loss of memory, foggy thinking, don't trust myself to drive at times, slurring of words at times. The progression of this can lead to a coma. I suggest the you research on the internet about NASH. you can get the full explanation & progression of this disease. Being exhausted is a major nuisance and will not disappear. We will always have it. So I decided to study about what foods & juices I can make to maybe help with the lack of energy. Remember, everything that we put into our mouths affects the Liver. So, time will tell. Read some of the comments made to me. I think they might help. Also, the stages of this disease is pretty accurate, so study up on this and contact your doctor if anything changes. That's how I discovered the brain problem and went in and told him I thought this disease had progressed to causing the brain problem. This is a puzzling disease & as with most of us by the time they discovered I had cirrhosis of the Liver (NASH) I was at Stage 4 & given 3 months to 3 years to live. I am beginning my 3rd year & perhaps they were right. Time will tell. In the meantime it's important to: have the right doctor, get plenty of rest, eat & drink the right foods, work on keeping a positive attitude & try walking every day. Remember, YOU ARE NOT ALONE ! Besides all of us around the WHOLE world dealing with this disease we do have God on our side. Please keep in touch....
I just wanted to say your reply has really moved me. You sound like such a determined and positive person. Stay strong. xx
Thank you so much. Since NASH I am not quite myself. I have been studying on this disease and am actually fascinated & curious about it. I did not realize that the WHOLE BODY is affected by the Liver. More people out in the world need to be aware that you can get cirrhosis of the Liver & not be a drinker. Anyway, reading everything I can on the internet is very educational...steps of the progression of the disease, foods we should eat, healthy smoothies, foods that are definitely NO-NO's. I have found this site to be as God-send ! I was trying to find a group meeting of others with NASH..none around. It helps to talk with others & learn what they are experiencing & what has worked with them. Like others on this site I have problems with the functioning of the brain, exhaustion , and yucky mood swings (this is when I don't like myself!) So, my Lord, my amazing 2 sisters, a few close friends, and this site help me make it through each day. It's difficult as you know to keep a positive attitude and be grateful for the good moments we have each day. Thank you again for your note. I truly appreciate what you had y o say. Please keep in touch & let me know how you are doing. God bless......
Thank for the wonderful.info you provided for all of us! I do t know what stage I'm in, I think know pretty early into cirrhosis!
Have you been to a HEPTOLOGIST ? Need to start there. Once you you see him/her ask questions, again I repeat.....ASK all your questions PLUS tell them about what is going on with your body. Don't look for complications but, this is important......BE AWARE. Next....research, research, research..foods to eat, foods NOT to eat, rest when your body says "rest". (This is the part I am having trouble excepting.) You will discover so much about this disease. I have gone from being frightened to being VERY curious about my liver. So, I have this weird sense of humor......my family & I were sitting around one day discussing my sick liver. Then I got this crazy idea & said "I want to name my liver !" So, after laughing about this & heard of alot of suggestions, we all agreed to the name: OLIVER ! Perfect name. So, what I am trying to say is KEEP YOUR HUMOR or develop one. It does help. As you surf the internet you will learn alot, the good, the bad & the ugly. This site is a great start.
Okay, enough for now. Please contact me if you have any questions or just want to talk. It helps to talk with someone with the same issues we have with our liver. If you are a believer lean on the Lord. His peace He gives you is amazing.
Remember, you are NOT alone.
Linda
I named my liver also. Her name is Cherry. She can be very outspoken if I eat or do something that she doesn’t approve of. It is going to sound crazy but I was at a doctor appointment and he wanted to put me on a specific medication and when he mentioned it Cherry started hurting. I asked about anything else and he suggested a different medication and the pain went away. When I got in the car i looked up the first medication and it was not good for my liver where the second one didn’t have the contraindications. I now check each medication with not only the internet but with Cherry too.
I so understand. Were you surprised as I was as to all the liver does to sustain our bodies. I don't know about you but I really screwed up eating all the wrong things. I had the gastric-by pass 20 years ago. I did it to save my life. At that time I was at my highest weight of 397# & was on about 5 different meds to get my blood pressure down. Within 3 weeks of the surgery I no longer had to be on any meds PLUS I no longer craved & over-indulged on sweets.....ANY KIND & no limit. Regardless what anyone says, gastric by-pass does not make it any easier to lose weight. As with any changes you have to have the correct mind-set & work on getting the weight off for YOU. Wzhat is sad is that any liver disease is difficult to diagnose & by the time it is discovered , as with me....STAGE 4 NASH WITH only have 30% of OLIVER working. It took dr. in Oregon 4 years to FINALLY discover what was causing my platelets to be so low. By that time I was retaining fluid BIG TIME ! I looked like I was 10 months pregnant & my feet & toes were unrecognizable! I ended up in Salem Hospital with Ascites (sp) & it took over a week to get that cleared up, got the liver biopsy going from my neck down to my liver where I got the joy of feeling 2 little pinches. I ended up moving back to California & went to STANFORD where the results came back about same as Oregon, except the Dr. did not agree with Oregon telling me there was nothing I could do to improve the liver z& my life expectancy was 3 months to 3 years. Helps to get a 2nd, 3rd, or 4th plus opinions. I was told at STANFORD that I had NASH, STAGE 4, however my meld score was at 8 and since then it has dropped to a 7. I am sure everyone on this site was frightened & bewildered as I was. What the heck is NASH ? What is STAGE 4 ? What is a Meld score ? What is Ascites (sp) ? All I can say is see a good Heptologist, research as much as possible, get inventive on you prepping & cooking of foods, veggie juices, etc. I am so fascinated by this disease & try to explain to those t hsst have w questions how you scan get this disease & not been a drinker. Shocked the heck out of me.
Things I have a difficult time with are:
1. Major lack of energy
2. Having this bulge on the right side
3. Discomfort on the right side after eating something I thought was good for dear OLIVER.
4. GETTING that foggy brain thingy (forgot the name) & having to take XIFAXAN ( expensive, but very necessary)
5. Memory loss
6 Major personality change and not for the good !
7. Unbearable muscle & bone pain from the toes up to the groin area. All I can do with this is try to walk it off while I am crying & praying for it to stop.
8. Sleep through the night...yeah, right ! Not gonna happen so I go with the flow & figure I'll sleep later on.
Anyway, things could be worse. Have to try to keep a sense of humor & limit the "pitty party" ! OOPS, there I go chattering away. It is so great being on this site. We learn that we are not alone & get to communicate with others with a liver disease! Small world & to end up with this disease that is considered a "silent killer". Definitely need to get the public educated so there will be less with this disease.
Anyway, THANKS for your response. I hope we can keep in touch & share what is working & not working for us.
Take care & God Bless !
LINDA
Where did you find the info on what, and what not, to eat?
I researched like crazy on the internet. I think I typed in diet for liver disease, something like that. I know I typed NASH 4 LIVER DISEASE & got some info. Also, I've ordered several books thru AMAZON.....SKINNY LIVER by KIRKPATRICK & HANOUNEH, WHAT YOU MUST KNOW ABOUT LIVER DISEASE by SNYDER, A PATIENT EXPERT WALKS YOU THROUGH EVERYTHING YOU NEED TO LEARN AND DO by DICKERSON. I also got RAW ENERGY IN A GLASS by TOURLES & SIMPLE GREEN SMOOTHIES by HANSARD & SELLNER.
Keep in mind, I do not have all the answers about what we are going through. I am studying everything I can get my hands on. Most of us have the same symptoms, but at different degrees & timing. I have learned REAL QUICK what my Liver does not like.....bulging and discomfort because I chose something that puts more stress on my Liver. Please keep in touch.
OOPS, by the way, I have not read through any of these books. I looked up things I wanted to know, which helped, however I plan on reading the books thoroughly, if I can do it without falling asleep !
Thank you! Those are excellant suggestions!
I find it difficult wadi g through a lot of posts because some ar USA based and others UK.
You are so welcome ! Hang on to the HAPPY moments & stay strong through the tough times. Remember, you are not alone.
The last time I tried to go for a walk, my varices ruptured and I was lucky to make it to the iCU instead of the morgue. Yes, I want to exercise -- the question is, HOW? Telling people to "try walking every day" implies the person is not trying hard enough. I tried hard enough that it nearly killed me.
Also, juices are a a bad idea for people with NASH or NASH-associated cirrhosis. They contain high levels of fructose, which makes NASH worse.
Most people -- including most physicians --blame people with NASH. They think we eat "the wrong things" (but no one knows what the right things are) and don't exercise enough. Don't give in to their lies. NASH is a biological problem and we need real research and medications.
Bariatric surgery can sometimes save people with NASH. The problem is that people with cirrhosis are often too ill to qualify. Also, insurance only pays partly for bariatric surgery. I wish I had been able to get bariatric surgery when I was still well enough.
What we need is to band together and demand better treatments and more research. It is true that we are not alone. But, so far, we have not banded together. if we each blame ourselves and our "lifestyles", instead of organizing and demanding more help, we will die. Plus, if there were more awareness of this problem (and that the problem is not our fault) more people would be willing to join organ registries. SILENCE EQUALS DEATH!
I am very sick, but willing to do what I can to form an organization that advocates for more research. Is anyone here with me?
Serenity1948, my last response sounded harsh, and I apologize for that. I am not upset at you -- I realize you are trying to help me.
I am upset at all the physicians, and non-medical people, who insist that this horrible disease is all our fault. They feed us a pack of lies that NASH and cirrhois are all our fault because we don't eat the "right" things -- but no one knows what the right things are. For decades, I was told the food that was "healthy" for me was lots of whole grains with fruits and vegetables. After following that diet strictly for 20 years, now physicians say "Whoops! That is the *worst* thing for people with this disease to eat." So, eating what my physicians said to eat is probably a big reason why my problems are now life-threatening.
As for exercise, here is a study showing exercise worsens varices in people with cirrhosis:
ncbi.nlm.nih.gov/m/pubmed/8...
I am sorry I sounded so angry. have been having a lot of trouble coping emotionally with my many health problems (I am also having breast cancer problems). Sometimes, my personality sometimes seems to have changed, and I am truly "not myself."
I have been trying to find a counselor or psychiatrist to treat this problem. But, no one takes Medicaid, and Medicaid in my state (Michigan) forbids counselors to accept anything out-of-pocket from medicaid patients. About 2.5 years ago, a psychiatrist prescribed a potent drug, Lamictal, in addition to the Prozac and Buspar I had been taking. But, right after I saw the psychiatrist, I lost my insurance. Lamictal is too dangerous to take on one's own. (And my Rx expired long ago, anyway.) For the past 2.5 years, I can get neither a counselor or a psychiatrist. Either they turn me away outright, or put my name on a waitlist, and then my turn never comes. So, my personality changes have gotten worse. Sometimes, I just don't recognize myself anymore.
I am being seen at a liver transplant clinic, but so far, I am not sick enough to qualify for a transplant. If sounds as if you do qualify for a transplant. It's hard to get seen by a liver transplant clinic. (I couldn't get into a transplant clinic until after my varices ruptured.) But, You should try very hard to get into a transplan clinic and get a transplant. A healthy lifestyle -- even if anyone knew what that was -- will not get you a new liver. A transplant will.
Also, if you can get bariatric surgery, I strongly suggest you do it. Sometimes, bariatric surgery will actually help reverse cirrhosis somewhat. Often, the bariatric surgery is done at the same time as the liver transplant, so try to see the transplant clinic first.
The bottom line is, lifestyle does not work for this condition, and there are nowhere near enough livers to go around. As you say, people all over the world are struggling with this. Instead of actually being helped, though, they are blamed, and many of them die.
Unless we demand more real medical treatment, most of us will die of our liver disease. Actually medical research and treatment is the only thing that will save us.
Maybe you will be one of the lucky ones who gets a liver transplant. Or, maybe you will respond very well to bariatric surgery. But please, try hard on these things, and give up the wishful thinking. You cannot make this fatal illness go away by drinking juice.
And, may God be with you.
Hi Rosa. I’m from Australia and only very new to this having been told only 2 months ago because my dr was concerned that my liver levels were high in my last 3 blood tests. I don’t know what stage I’m at yet. But what you say resonates with me. When the gastroenterologist told me it was because I’m overweight and drink alcohol I felt like telling him to go jump. I’m 63 and about 10 kL overweight and I’m a social drinker. I would say I eat much healthier than most. I never have takeaway or processed foods. I eat mostly fresh food, grow my own herbs and veggies, make my own bone broth etc etc. surely it’s not just a result of diet and alcohol. So I keep asking myself WHY ME???? And I keep searching for answers!!! I’m seeing a holistic dr and a clinical nutritionist who seem to me to be genuinely looking for the cause rather than just assuming.
Best of luck
Thank you, HoleyMoley! There is new research showing that metabolic syndrome (including Type 2 Diabetes, NAFLD, etc) occurs when the brain tells the body to store more fat than the body has room to store. Some groups, such as East Asians, just do not make much adipose tissue (tissue for storing fat.) And, in all groups, there are some people who just don't have enough adipose tissue for the amount of fat their brain needs to store. Plus, weight seems to be affected by factors in modern life -- maybe chemicals in food, water, grooming aids, etc., or maybe artificial light, or maybe even new virus that were rare in the past. Generally, if a chemical or something affects a person's weight, it will raise their weight, not lower it. So, now something like 1-in-4 humans has some degree of this problem with storing fat. Many of these cases are minor, and many can be helped with medication. Ask your physician whether you need medication, and if not, when would medication be needed. If your physicians says you can fix this with lifestyle, he is wrong, and you should look for a physicians who tried to treat this with medicine, not by blaming people.
By the way, there is a test call the "alcohol-no alcohol scale" that says whether alcohol is a factor in liver disease. It looks at various factors, including certain liver enzymes, size of some blood cells relative to another, etc. Some people's livers are very susceptible to alcohol, so even someone who never gets drunk might get liver problems. Also, once a person has liver problems, they should stop drinking alcohol. But, don't let the physicians tell you alcohol plays a role unless they run your blood tests values on that scale.
Being testing for hepatitis, and inoculated against hep a and hep b, is usually also recommended for people with liver problems. You may also need to reduce tylenol dosages -- tylenol is very hard on the liver when taken in high quantities.
Hi Rosa. Well I haven't had any alcohol since I was first told by my dr that my liver enzymes where high. I do miss a glass of red with dinner though. Never been one for taking pills so don't have to worry about Tylenol. Hoping the gastroenterologist will have some advice tomorrow.
My dr actually told me to USE tylenol. I got rid of the ibuprofen I had and bought tylenol, the pain in my side got so bad I lost 2 days of work, besides the days I miss already from the complete fatigue I feel on a daily basis. I looked up what meds to take for headaches and such since I get many more since being diagnosed with NASH. Every site said stay away from tylenol. Now I have 2 bottles to give away. Lol. My dr loves my sense of humor, I told her if I cant laugh at my disease it will win and I'm to much of a fighter to lose. Besides I want to get to see my grandkids before I die.
WTH?! I specifically asked my gastroenterologist whether I should take Tylenol (acetominophen) or Advil (ibuprofen) and he told me to take Tylenol. I asked whether or not extra strength T was ok and he said yes. And I have cirrhosis!
I've been informed some regular meds like antibodies can cause Cirrhosis! Like Doxycycline for face of course paid meds!
Medications can have side effects. But, if people were to stop taking medications because of this, we'd be back to where we were 100 years ago. Then, enormous numbers of people died young of illnesses that can be prevented or treated today.
Doxycycline is an antibiotic, and antibiotics have been miracle drugs in stopping infections. However, Doxycycline taken orally can have severe side effects. I'm not sure how often it is taken orally for acne, and how often it is used topically (on the skin) for acne. Oral medications for acne have risks, and generally should only be taken if the person feels their acne is really harming their life.
I did a quick for Doxycycline's side effects, and found nothing involving the liver. Some drugs are hard on the liver, and some are not.
Nash diet (instruction)
Cirrhosis Stage 4- My journey 
How to survive with NASH stage 3
seeking informed input studies for NASH
