What is Cryptogenic Cirrhosis?

What is Cryptogenic Cirrhosis (with C bar) and what precautions should I take for my mother, e.g., about eating habits (which include sugar and salt intake) and exercises?

I was the anon263260 post. Sadly this disease took my mother's life eight months ago. In all the years of having this horrible illness, she was never sick enough to qualify for a transplant to the point that the doctors told that she if she ever did more than likely she would not even be eligible to have one anyway. I wish there was more awareness about this.

To the man about his father as U of I. I disagree with the idea older people should receive transplants. I lost my father to heart disease when he was 81 years old.

I am sure your loss was hard and you father likely, like me would, aside from the liver issue be in otherwise decent health.

I do not know a system people would like as someone basically has to die waiting for a liver. I suppose my view cannot be unbiased, but I believe it makes far more sense to give younger people organs in general. They're more likely to live and I think people who do not make it to at least 35 or more in life do not get to know a wife and kids and things a person of 60 or so has already known. This and survivability of the surgery are no doubt two reasons to have a cutoff age.

I do not like the fact that someone who drank their way into this type of condition would get a liver over those of us who did not. I think if there is a solution, it will be in stem cells or some kind of liver dialysis machine, which is not yet possible, it seems.

I hope all get donor cards. The liver supply verses need seems to be going to get far worse going forward. I have a donor card. Obviously, my liver would not be an organ they would want. Often, unless death is accidental, a bad liver destroys all other organs on its way out. There are clearly not any good solutions at this point in time.

I was diagnosed NASH some ten years ago and well, I am not sure it would have made a difference, but I wish I had known then that too much sugar deposits fat in your liver, specifically these fructose sweeteners. I am nearly 6 feet tall and never weighed over 210 pounds, and was never diabetic -- at least according to HA1C tests. I did fail a post glucose ingestion test about a year or so ago. I believe this to be the primary source of my liver problem.

I understand everyone's desire to know what and why, and I think there are some cases of a exposure causing their problems. It's very clear the huge numbers of people now coming down with metabolic syndrome and NASH are caused by nothing but the effects of fructose. I had an insane diet as a kid, not knowing any of what they do today. I am 46 years old and did not drink alcohol after the age of 21 and not much then either.

The amount of fructose I ate when trying eat "healthy" is saddening. I suggest people read the Dr. Lustig article as a why and how it happens. I can only hope enough time passes where stem cells might work, or maybe the luck of a transplant or it rebuilds itself even more.

My liver is very big and full of fat. My liver enzymes were high many years, ago but have been good for a long time. Despite this, my liver continued to degrade by both biopsy and symptoms. Liver illnesses, of course, have their ups and downs for most people.

I believe low glycemic foods, exercise and weight reduction and additions of some good antioxidants and fiber foods help. It may be that, like a toxin, once a certain exposure has been reached, it may be impossible to change course.

Fructose is very hard to avoid, as it is naturally occurring. Before posting how wrong I am about it all, watch Dr. Lustig's UCSF presentation called "Sugar: the bitter truth" and maybe "Who is making us Fat?" by the BBC. I do not mind being disagreed with, but not by those who have not been equally informed about the subject.

What I'm finding from my research is individuals with only fatty liver and no other diseases are having constant meld scores -- not rising, just staying about the same -- although there are slight changes noticeable on their MRI's and sonograms (focus on the overall size of the liver, not their meld score). Their meld score doesn't represent the decomp of their liver, although you would think it would.

We need to focus on the age of the individual with cirrhosis caused by fatty liver as well. The older individual really needs to be on the transplant list if the MRI shows almost full cirrhosis from the exterior or over one-half.

I know someone who got on the list in California, and moved to Indiana, then he ended up needing a dual transplant, and just recently he got a dual transplant. He was 68. My dad had cryptogenic liver disease and the doctor said initially that he could get dual transplant, but later on they changed the age limit for dual to 65. My dad just turned 70, and as of today I heard that an individual at Indiana University age 68 got dual. I just don't understand what is going on at Indiana university.

I lost my dad and I need answers.

My dad also died due to cirrhosis "cryptogenic" this past summer and he was just like an earlier post -- "always" too good to get on a liver transplant list. His liver enzymes and other test were never poor enough to even do the heart test.

He started to fill up with ascites about a year ago and lasix wasn't enough to make him urinate. He had two choices: to get tips or paracentesis. He chose paracentesis because he never bled or threw up like everyone else getting tips. He ended up getting a bacterial infection during the paracentesis at IU health in Indianapolis and became sick. His kidneys started to fail him, although he beat it. When he was released it wasn't but a week or two and his kidneys just started to fail on their own: hepatorenal syndrome. My dad was also denied a dual liver/kidney transplant due to his age several months ago, although the hospital and his doctor never told us it was impossible. We found out later that 65 is the cutoff at IU health and he passed that up years ago. Wow, what false hope.

My dad had nash cirrhosis and wasn't diabetic, not overweight and ate junk food like the average person. He never drank at all, was a non-smoker, worked in the yard all day. He had no other underlying conditions to cause what he had. According to the research I've read, my dad's cirrhosis is more common in obese, diabetic individuals, although I don't know of one person who has had such a serious battle with it like my dad.

The articles always say lose weight, to slow it down and eat healthy. We watched our dad like a hawk and that didn't seem to slow it down at all. We bought most of our foods from Clark's grocery, hormone free meats, trader joe's and we made him eat mainly fruits and salads since his diagnosis. That didn't slow it down at all. The doctors only gave him one MRI and one sonogram in the last three years.

My dad just died in July of cryptogenic cirrhosis. The doctor said they called it Nash. He just turned 70. In 2008 he coughed up a dark substance, then found out he had cirrhosis of the liver. He had no underlying diseases, was not diabetic, not overweight, etc. He felt fine his entire life. He did what the doctor told him to do since 2008. He was feeling good until October 2011. That was first time he started to gain fluid, so he started parencyntesis at that time.

He started to lose a lot of weight in his face, and had leg cramps more. Every time they went to doctor the doctor said everything looks good. His condition was always too good to get on transplant. They always sent him home to take his meds.

In April he had an infection with paracentesis, and ended up with renal failure. They thought it was hepatorenal syndrome. He stayed in the hospital and the kidney function got better. He went home for one week then went back to hospital for three more weeks. His creatinine levels and kidney function went up again. They released him in June, informing that they wouldn't be able to do a dual transplant on him because he was too old. Initially, they said it would not be impossible.

We had one last meeting and doctor said he had six months to live. This was the first time my dad heard that. They sent him home and he died three weeks later. He never was yellow, never threw up blood. They did one endoscopy and did one device but small. Go figure. There was a guy in the hospital who was 65 and needed dual he was already on list and got one. That guy drank. The entire time my dad was worried about that guy. This was at Indiana University Medical Center. We should have never gone there.

My mother has this condition and one thing this article does not mention is the changes to their mental capacity over time. She was diagnosed back in 2004 and I have watched this illness age her and take over her body.

She does all that she can to keep her ammonia levels down, which can trigger bouts of dementia. But we are seeing that it's now getting beyond her control.

I don't wish this disease on anyone.

I check every so often to see if there is more awareness in regards to this disease, but unfortunately, there is none.

I think this type of cirrhosis is more dangerous than cirrhosis caused by excessive alcohol consumption. I agree with the article that it's harder to have an early diagnosis with cryptogenic cirrhosis since the cause is not known.

People who consume too much alcohol are more likely to have their livers checked out to see if any damage has been done to it. But with cryptogenic cirrhosis it lurks and probably won't get diagnosed until the liver disease symptoms show up.

Maybe if scientists discover that cryptogenic cirrhosis is hereditary, that might give people a reason to get checked out annually.

When I was young, everyone thought that cirrhosis could only be caused by too much alcohol. I actually had a great uncle pass away from this condition. He developed it a short time before he passed away in his late 80s. He also had Alzheimer's during the last stages of cryptogenic cirrhosis of the liver.

I remember my family members asking him not to drink whenever we went to visit him. He would insist that he doesn't drink and hasn't drank in a long time. But no one believed him! Everyone thought that he drank in secret and maybe even forgot about it later.

If he had been around now, I'm sure no one would have questioned him about this since it's been proven that cryptogenic cirrhosis isn't caused by alcohol.

I know that we still haven't figured out what does cause it, but at least we're more knowledgeable about it than we were several decades ago.

Not all people with NASH develop cryptogenic cirrhosis right?

My dad has NASH and we're not sure why. He has been diagnosed with type 2 diabetes recently but he had fatty liver even before his diabetes. So his condition is even more confusing.

My dad's theory is that his NASH is due to anesthesia that he must have inhaled while he worked as an anesthesia technician. He worked for 15 years and was responsible for giving patients anesthesia during surgery.

I don't know if his theory is true but from what I understand, there doesn't have to be any specific cause for someone to develop NASH. All we hope for now is that his liver doesn't become more fatty.

What are the chances of my dad developing cirrhosis of the liver because of his NASH?