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Why did I develop a fatty liver at 10 years old?
Hi I'm a 20 yrs old female, 5' tall, and 110 lbs. In have a non alcoholic fatty liver, with high enzymes, and unusual scaring on my liver. This scaring was discovered when I was 10 yrs old after my first liver biopsie. Back then, when I was 10, in was a healthy weight. I was active and liked to play with my friends like everyone else. I went to the Doctor for my yearly check up. They had me so a urin test and found blood in the sample and signs of high liver enzymes. Almost immediately they started testing. Blood tests weekly, ultrasounds, liver biopsie. One thing after another and for every new doctor i got the same tests would be ran again and again and again. It has been 10 years now and there have been no amswers. All my hepatitis tests were negative, as were iron/copper tests and chronic hepatitis/Wilsons tests. I get checked for these every time. My condition doesn't cause pain though but I am constantly tired. Last year I was super sickly only weighing about 90 pounds, I looked like a skeleton but still my liver enzymes were just as high as ever. I had little to no fat in my body. I'm suppose to be trying to gain weight but from everything I've read gaining weight is bad for my fatty liver. WHAT DO I DO?!?!?!? I've gained 20 lbs because I was sick and under weight but it's bad for my liver QwQ I'm at a loss. What should I do? I have milk thistle, I take it daily. Hasn't really helped much so far. What is wrong with my body!
The following is for anyone who happens to read this thread in the future. Note that the first word in Faith's question title is "Why".
The Dr. Balisteri that I wrote about is a top expert in children's liver diseases. The 1st article I cited above, "Lean Patients, Yet Still at Risk for Fatty Liver Disease", by Balisteri is about Faith's condition. The article appears in Medscape which is an 'authoritative source'. That means that it is a top medical site that is taken very seriously by doctors. It's not some random blog.
No current cures are mentioned. As to the "why", since Faith replied that she has no waist fat, we can move to the last thing Balisteri says about possible cause: "In my opinion, the role of other environmental factors, such as early antibiotic exposure and alterations in the microbiome, would be additional fruitful areas of investigation." https://www.medscape.com/viewarticle/868783_2
Very simple and easy to understand, once you know that a simplified definition of microbiome is "gut bacteria".
(The thinking behind that is common knowledge: almost everything that gets absorbed from the intestines initially goes right to the liver. That can include bad substances that come from any bad bacteria in the intestines. Those bad substances can cause inflammation which possibly leads to NAFLD or NASH, without being overweight. Faith had said that she was ill last year. It's not known if she was sick often when younger. If anyone was sick and received antibiotics, that can mess up the normal gut bacteria and leave the way open for bad bacteria.)
The therapy consists of probiotics (good bacteria) and prebiotics (food for good bacteria, so they thrive). There are some other things as well. That therapy seems harmless and fairly easy to do, but anyone should as always ask their doctor if it's okay to try. Your doctor might have considered it and decided against it, so you can ask why.
So there you have it, a very top doctor in NAFLD/NASH in non-obese children wrote his opinion on what might be helpful. It could further be looked into what experiments are currently under way.
The Dr. Balisteri that I wrote about is a top expert in children's liver diseases. The 1st article I cited above, "Lean Patients, Yet Still at Risk for Fatty Liver Disease", by Balisteri is about Faith's condition. The article appears in Medscape which is an 'authoritative source'. That means that it is a top medical site that is taken very seriously by doctors. It's not some random blog.
No current cures are mentioned. As to the "why", since Faith replied that she has no waist fat, we can move to the last thing Balisteri says about possible cause: "In my opinion, the role of other environmental factors, such as early antibiotic exposure and alterations in the microbiome, would be additional fruitful areas of investigation." https://www.medscape.com/viewarticle/868783_2
Very simple and easy to understand, once you know that a simplified definition of microbiome is "gut bacteria".
(The thinking behind that is common knowledge: almost everything that gets absorbed from the intestines initially goes right to the liver. That can include bad substances that come from any bad bacteria in the intestines. Those bad substances can cause inflammation which possibly leads to NAFLD or NASH, without being overweight. Faith had said that she was ill last year. It's not known if she was sick often when younger. If anyone was sick and received antibiotics, that can mess up the normal gut bacteria and leave the way open for bad bacteria.)
The therapy consists of probiotics (good bacteria) and prebiotics (food for good bacteria, so they thrive). There are some other things as well. That therapy seems harmless and fairly easy to do, but anyone should as always ask their doctor if it's okay to try. Your doctor might have considered it and decided against it, so you can ask why.
So there you have it, a very top doctor in NAFLD/NASH in non-obese children wrote his opinion on what might be helpful. It could further be looked into what experiments are currently under way.
2 Comments
There's another thing though, this mysterious condition runs in my family. It never shows up though as early as it did me. My grandmother started showing signs when she was in her 40s and my uncle just started showing signs and he's almost 40. I'm 30 years too early. I also am the youngest person in my family to loose my gal bladder (which when seen through ultrasounds was found to be under size, this was a year ago). I've had many family members with this same strange liver condition and doctors tell them it's some sort of unknown or unrecorded autoimmune disease. The answers were/are never straight and no diagnosis was/are ever given. So I don't think it's bacteria
Also as a child I wasn't sick much but I was extremely lethargic and it got worse when I was 12 and ended up with mono. i was never put on antibiotics for it though.
Also as a child I wasn't sick much but I was extremely lethargic and it got worse when I was 12 and ended up with mono. i was never put on antibiotics for it though.
That new info about family history changes everything, Faith, since genetics & autoimmunity now seems the most important. I think you're right that the gut bacteria explanation seems less likely.
It seems that your doctors have thoroughly investigated this but are stumped. It seems as if they have been trying hard, since you've had liver biopsies and many tests.
Without any clear road to an answer, what I can think of is this: you have to scour the planet using the internet and hope you get lucky and find a doctor who knows some answer -- or at least other patients who have the same thing that you have. Maybe one of them had some treatment that helped. Of course, you've started all that already.
In medical journals, there will sometimes be what is called a "case study" where typically a doctor has encountered some unusual patient or some new condition. So they publicly report it and that is a first step. Other doctors might read the case study and communicate with the 1st doctor as they build up clues. But you can also look and might be able to find any case studies that exist. If not, then you can look regularly. Unfortunately, there would be a lot of frustration and disappointment but at least there's a chance to get somewhere.
Another possibility is to directly find other patients who are like you. They might have some useful info. At least you might not feel as alone if you find any at your same age. I'd register at every place in the world that you can discover and ask.
Another possibility is contacting doctors like Balistreri. Here he is at Cincinnati Children's Hospital: https://www.cincinnatichildrens.org/bio/b/william-balistreri
There is an email address for him there. But it might take weeks to get a reply, if any.
Notice near the bottom where it says "Publications". That means he also does research, besides seeing patients. It's possible that in order to further his own research, he might take an interest in your case and ask for your doc to send your records to him. He might send back some guesses to your doctor.
Notice that there are also names of other researchers. One of those might take an interest. Journal articles might designate one lower ranked author as the "correspondng author" whose job it is to receive email about a study.
A *few* doctors, especially the researcher kind, do answer email. For free.
Who knows, some other patient might even find this thread and contact you. I'll put all the terms in for a websearch:
lean NAFLD
lean NASH
nonobese fatty liver disease (NOFLD)
nonobese steatohepatitis (NOSH)
The next thing is to know what to say in any emails or phone calls. Here is what for now I suggest as the most important points:
-- you have nonobese fatty liver disease (NOFLD), confirmed by liver biopsies
-- you are 20 and had your 1st biopsy at age 10, that might get a doc's interest
-- you have multiple family members with the same thing
-- besides being not overweight, you do not have a fat middle
-- you've had your gallbladder removed. If someone like Dr Baldistreri has never seen a NOFLD/NOSH patient with gallblader disease, that might really interest him.
Those are some initial thoughts for a strategy. At least there's a chance. How does that sound to you?
There's also the matter of knowing what genetic tests your docs have done, so you can put that in your description of yourself.
Also, haven't you been told that you have NASH, not just NAFLD, because of the scarring?
It seems that your doctors have thoroughly investigated this but are stumped. It seems as if they have been trying hard, since you've had liver biopsies and many tests.
Without any clear road to an answer, what I can think of is this: you have to scour the planet using the internet and hope you get lucky and find a doctor who knows some answer -- or at least other patients who have the same thing that you have. Maybe one of them had some treatment that helped. Of course, you've started all that already.
In medical journals, there will sometimes be what is called a "case study" where typically a doctor has encountered some unusual patient or some new condition. So they publicly report it and that is a first step. Other doctors might read the case study and communicate with the 1st doctor as they build up clues. But you can also look and might be able to find any case studies that exist. If not, then you can look regularly. Unfortunately, there would be a lot of frustration and disappointment but at least there's a chance to get somewhere.
Another possibility is to directly find other patients who are like you. They might have some useful info. At least you might not feel as alone if you find any at your same age. I'd register at every place in the world that you can discover and ask.
Another possibility is contacting doctors like Balistreri. Here he is at Cincinnati Children's Hospital: https://www.cincinnatichildrens.org/bio/b/william-balistreri
There is an email address for him there. But it might take weeks to get a reply, if any.
Notice near the bottom where it says "Publications". That means he also does research, besides seeing patients. It's possible that in order to further his own research, he might take an interest in your case and ask for your doc to send your records to him. He might send back some guesses to your doctor.
Notice that there are also names of other researchers. One of those might take an interest. Journal articles might designate one lower ranked author as the "correspondng author" whose job it is to receive email about a study.
A *few* doctors, especially the researcher kind, do answer email. For free.
Who knows, some other patient might even find this thread and contact you. I'll put all the terms in for a websearch:
lean NAFLD
lean NASH
nonobese fatty liver disease (NOFLD)
nonobese steatohepatitis (NOSH)
The next thing is to know what to say in any emails or phone calls. Here is what for now I suggest as the most important points:
-- you have nonobese fatty liver disease (NOFLD), confirmed by liver biopsies
-- you are 20 and had your 1st biopsy at age 10, that might get a doc's interest
-- you have multiple family members with the same thing
-- besides being not overweight, you do not have a fat middle
-- you've had your gallbladder removed. If someone like Dr Baldistreri has never seen a NOFLD/NOSH patient with gallblader disease, that might really interest him.
Those are some initial thoughts for a strategy. At least there's a chance. How does that sound to you?
There's also the matter of knowing what genetic tests your docs have done, so you can put that in your description of yourself.
Also, haven't you been told that you have NASH, not just NAFLD, because of the scarring?
To Faith0Swan: if you read this thread I will be happy to discuss any or all of that above with you. For example, the one link I put above is advice from a top doctor (Balistreri) who deals in pediatric liver diseases.
"Through more than 550 publications, Balistreri has helped to clarify the understanding of many aspects of liver diseases in children.
Balistreri has been editor of The Journal of Pediatrics since 1995. He is the former editor-in-chief of the Journal of Pediatric Gastroenterology and Nutrition, and co-editor, associate editor, guest editor, reviewer and member of numerous editorial boards of several journals. He is co-editor of the prestigious text Liver Disease in Children.
In 2000, Balistreri became the first pediatrician to serve as president of the American Association for the Study of Liver Diseases. He has received numerous awards."
and on and on.
https://www.cincinnatichildrens.org/bio/b/william-balistreri
"Through more than 550 publications, Balistreri has helped to clarify the understanding of many aspects of liver diseases in children.
Balistreri has been editor of The Journal of Pediatrics since 1995. He is the former editor-in-chief of the Journal of Pediatric Gastroenterology and Nutrition, and co-editor, associate editor, guest editor, reviewer and member of numerous editorial boards of several journals. He is co-editor of the prestigious text Liver Disease in Children.
In 2000, Balistreri became the first pediatrician to serve as president of the American Association for the Study of Liver Diseases. He has received numerous awards."
and on and on.
https://www.cincinnatichildrens.org/bio/b/william-balistreri
You have a specific problem and nobody on this website is a medical professional. What I would suggest, if you haven't already done so, is, if you're able to travel and can pay for it, is to go to places that specialize in finding answers to difficult conditions. You've probably heard of some of them -- John's Hopkins, Mayo Clinic, Cleveland Clinic and many top university hospitals -- made their reputation by going deeper than the average docs do, even the average specialists. I would tell you to stop the milk thistle, though -- milk thistle isn't recommended to be taken on a regular basis. It's mostly used when you're trying to clean something out of the liver. There are natural remedies that do support the liver and can be taken more regularly -- artichoke, for example, is specific for the fat digestion action of the liver and gall bladder -- and of course the main antioxidant protecting the liver, glutathione, is very high in wheat grass. Sometimes taking milk thistle for long periods of time can make medication wash out too quickly or nutrients wash out too quickly. You don't want to liver cleanse in your situation, you want to liver strengthen, as you're already eating in a way that might be depriving you of essential nutrients. Other than that, though, you really need to talk to the best medical professionals, and they aren't here, unfortunately. It's possible there is a forum on this website specifically devoted to liver problems, though, and you might find something in the archives if there is that gives you some enlightenment. I hope you do find the answer, this must be very tough to handle.
6 Comments
Paxiled wrote: " I would tell you to stop the milk thistle, though -- milk thistle isn't recommended to be taken on a regular basis."
Your advice to stop the milk thistle is incorrect and possibly harmful. I sincerely hope she doesn't listen to it.
It took only 2 minutes for me to discover a recent review in which milk thistle has been used in at least 8 medical research studies on NAFLD. The patients in the study took it daily for as long as 24 weeks. I saw no mention of harm. But if it provides a benefit and she stops it, then that is possibly a serious harm if her condition worsens because of your advice. (If it was just bad advice about exercise, I might have just ignored it.)
That review is carefully provided by the National Institutes of Health.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5728929/
Here is another study, 6 months with twice daily milk thistle.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3612568/
It is therefore quite possible that her doctor(s) told her to take the milk thistle and you have told her to stop taking it. You also have no idea how long she has been taking it. You have offered zero evidence in telling her to stop taking it. Do you have any?
If she decided on her own to try it, she might have liked to hear about what the research says rather than just "go see a doctor".
Your advice to stop the milk thistle is incorrect and possibly harmful. I sincerely hope she doesn't listen to it.
It took only 2 minutes for me to discover a recent review in which milk thistle has been used in at least 8 medical research studies on NAFLD. The patients in the study took it daily for as long as 24 weeks. I saw no mention of harm. But if it provides a benefit and she stops it, then that is possibly a serious harm if her condition worsens because of your advice. (If it was just bad advice about exercise, I might have just ignored it.)
That review is carefully provided by the National Institutes of Health.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5728929/
Here is another study, 6 months with twice daily milk thistle.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3612568/
It is therefore quite possible that her doctor(s) told her to take the milk thistle and you have told her to stop taking it. You also have no idea how long she has been taking it. You have offered zero evidence in telling her to stop taking it. Do you have any?
If she decided on her own to try it, she might have liked to hear about what the research says rather than just "go see a doctor".
You should know that advising someone with a serious condition if you don't have expertise in that condition from things you see on the internet isn't really going to be the best course for that person. I'm sure you wouldn't treat your own health that way. You should also know that consensus does not exist in medicine on much of anything. As for herbs and natural remedies, there are traditional ways they have been used for as long as we have records. Then there are small studies trying to find medications based on them and other small studies done by companies that sell a product containing the herb. Because herbs can't be patented, the money to do extensive research just isn't there (extensive research requires the experiment to be repeated several times by people other than those who did the original experiment). I go with traditional use usually, because it at least gives us some indication that people with the same brains we have figured some things out along the way. But to each their own, and the poster is entitled to act in complete rejection of anything I say on here.
Also, I know of no adverse consequences of stopping the use of milk thistle, as it does nothing for the condition the poster is describing. There are so many herbs and other natural remedies that benefit the liver that being careful with this one still leaves a host of others that might prove more helpful. As herbs are usually used in combination (or formula) by experienced herbalists, and changed over time as things progressed, I always say, if you don't know natural medicine all that well, treat it as you would any other form of medicine, with care and professional help. Do your own homework. Beware of the internet and especially PubMed.
I've only been taking the milk thistle for about a year, I started it when my body developed jaundice last December. I was advised to continue taking it in hopes of it strengthening my liver. I've only been doing as told in hopes of getting past this some how. Thank you both for all your advice even though it cause a small dispute. Paxiled, approximately how much do you think it would cost to see one of those doctors at those university hospitals?
It depends on your insurance. If insurance covers it, it will be the same as seeing someone anywhere else, except you'll have traveling expenses. If your insurance doesn't cover the place you choose because of the nature of your insurance, then they are probably very expensive.
I would also say, as I already have, that there are things that probably are better at strengthening the liver than just taking milk thistle. The part of milk thistle that strengthens the liver are the antioxidants in it, but the main protectors of the liver on a daily basis are first, you diet, and second, substances the body normally uses for this purpose, notably glutathione, which isn't absorbed well as a supplement but which is very high in, for example, wheat grass, and alpha lipoic acid. As for herbs, different herbs are used for different liver function, which is why a formula is usually used instead of a single herb. Those who use single herbs either have a single known problem or don't really know herbal medicine very well and just use the ones that get the most press.
Here is a storage disease that can affect even very young children: Lysosomal Acid Lipase Deficiency
https://www.liverfoundation.org/for-patients/about-the-liver/diseases-of-the-liver/lysosomal-acid-lipase-deficiency/
How do your cholesterol tests turn out?
https://www.liverfoundation.org/for-patients/about-the-liver/diseases-of-the-liver/lysosomal-acid-lipase-deficiency/
How do your cholesterol tests turn out?
Hi, I looked around to try and help and found a few things, but unfortunately nothing definitive. First off, it's most commonly called "lean NAFLD" or "non-obese NAFLD".
Apparently, the cause is not understood, but there is probably a genetic component. Do you happen to be Asian?
Have you eliminated all fructose from your life? That would include all sugary drinks and all sweets, whether they have high fructose corn syrup or table sugar. Even things like pasta sauce. Fructose might make your condition worse, which isn't a surprise.
How is your waist size? Fat around the middle is not just ordinary fat and would be bad. Do you exercise? How much?
-------
I'll leave these URLs here for possible use.
"Fatty liver without a large “belly”: Magnified review of non-alcoholic fatty liver disease in non-obese patients"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5561430/
2017
https://www.medscape.com/viewarticle/868783_4
by William F. Balistreri, MD
2016
Apparently, the cause is not understood, but there is probably a genetic component. Do you happen to be Asian?
Have you eliminated all fructose from your life? That would include all sugary drinks and all sweets, whether they have high fructose corn syrup or table sugar. Even things like pasta sauce. Fructose might make your condition worse, which isn't a surprise.
How is your waist size? Fat around the middle is not just ordinary fat and would be bad. Do you exercise? How much?
-------
I'll leave these URLs here for possible use.
"Fatty liver without a large “belly”: Magnified review of non-alcoholic fatty liver disease in non-obese patients"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5561430/
2017
https://www.medscape.com/viewarticle/868783_4
by William F. Balistreri, MD
2016
1 Comments
No I haven't taken out all fructose and sugar, I didn't think it could be hurting my body all that much. I have almost no belly fat, my ribs are visible through my skin. My waist size is 26 inches.
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