Very few research studies have upset me as much as this one telling doctors and researchers that if you have fatty liver disease there is NO risk to your survival! After finding out that 2 members in my Fatty liver disease support group died in December in their 30’s I am livid! My deepest sympathies to the families of these men, there was no reason for them to die and my heart is broken for them and you.
“The researchers analyzed data from more than 11,000 Americans, aged 20 to 74, who were followed for up to 18 years as part of the Third National Health and Nutrition Examination Survey.”
What is missing is the 18 year period of this study. Did the study start in 1968? 1978? That is the only way I can take it seriously.
I have a group on Facebook with 185 members in it. They live with the disease daily, they come in and share the struggles and the emotions related to coping with this disease. They range in ages from 20 – 60. I personally have a 15 year old with the disease but she does not feel comfortable sharing in the group. This group was created 3 years ago when I was trying to find explanations for my daughters disease, hoping that others would join me in the group and help me understand my daughter.
In that 3 year period I have been aware of 7 deaths!
In the last 6 months the following deaths attributed to NAFLD.
1. Margie – in her 40’s and not diagnosed until the disease was in its late stages.
2. Joanie’s friend – On his deathbed he told her he has NAFLD and was to embarassed to tell anyone.
3. Matt – 30 years old – Thought he was winning the battle and was being analyzed for his suitability for a transplant
4. Wayne 37 years old.- Wayne died this week, He was fighting hard to try to lose enough weight to be considered for a transplant when his battle was lost.
If within my SMALL circle of friends I can tell you 4 stories in the last 6 months PLEASE tell me how this study is TRUE!.
Wayne and Matt lost their battle with this disease in their 30’s. This terrifies me for my 15 year old daughter, is she destined to live a short life?
This is scaring everyone in my group. I am begging everyone in there to please eliminate any White Bread, Any white rice, any white pasta! Do not eat products with fructose or artificial sugars, do not eat products with added sugars! Do not eat fatty meats, Do not eat fish contaminated by the pollution in our water ways! Do not eat products with large amounts of sodium! This is your wake up call! They are deadly!
Eat Gluten Free when possible. If you must eat bread make it sprouted organic breads, If you must eat pasta brown rice pasta , or at the minimum whole wheat pasta! If you must eat yogurt make it Greek organic! Add your own fruit! If you must drink a sweet drink, use a juicer and juice your oranges, apples, berries and make your own! If you must use a sweetener use stevia or pure maple syrup. If you must eat meat, make it organic if possible and make it white chicken, lean porks, Leanest beef. No sausages, no hotdogs, no packaged sandwich meat. If you must eat Bacon , then make it turkey or chicken bacon. If you need sandwich meat cook a roast and slice it up for the week! Eat tons of Vegetables , eat them raw if you can! Dip them in Greek yogurt! If you need snacks, consider Air popped popcorn! consider unsalted nuts! consider organic or gluten free cookies or crackers, if you need chips try making Kale chips, or sweet potato chips.
I know its not easy and that its scary, I know its a ton of change and no one likes change. BUT if a liver will give out within 30 years!! Don’t you think its time you give this critical organ some serious attention!
Please donate to your local Liver Foundation! Please if you donate to food banks donate gluten free, donate some of the healthy products I listed above!
This DISEASE KILLS! Don’t you doubt this for a second! When your doctor pats you on the head and says you will be fine, please do not believe them! Take your health into your own hands and make smart choices. My group is available to anyone who has this disease and is lost or confused, or just wants to understand it better!
I am going to be yelling this from the rooftops as loud as I can! Your LIVER needs my help!
Thanks
Michelle
GetHealthywithMichelle's Blog 
Interesting, thank you for sharing.. It’s a lot to think about and I am obviously going to have to do some research into it.. I have always thought that the Liver was pretty much indestructible unless you were an alcoholic, drug addict or had some form of Hep. Not exactly shocking that I’m wrong though… I’m sorry for the people on your group who have lost their battle.. My thoughts and prayers go with their families.
I was diagnosed with NAFDL three yrs ago now and have always felt that no one really thought there was any real danger and that it was very curable, your response is interesting and warrants more research. I am beginning a Chronic Illness Therapy group myself and will look forward to following your blog. I have my own now carpespero@blogspot.com and am always interested in info regarding this little know disease….good luck to your daughter…
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Fatty liver, in and of itself, does not progress to serious liver disease, in many patients. If we look at statistics, the majority of cases of fatty liver disease, will never progress to NASH or nonalcoholic cirrhosis. In addition, heart disease and cancer are the top two causes of mortality in the U.S. So, it is more likely that heart disease will be the cause of death for most people, not liver disease. I am not stating that no one dies from liver disease. I am stating that to say that fatty liver disease does not affect survival is true, the difference being benign fatty liver disease vs. NASH and cirrhosis.
Lastly, gluten is not hard on the liver for patients with liver disease. The problem is gluten intolerance. Gluten intolerance is called celiac disease, therefore, going gluten free to protect the liver is only recommended for those folks with celiac disease.
We should not let emotion get in the way of disseminating accurate facts.
peppy,
I run a group with 200 members all over the world. The deaths i am aware of are directly related to this disease in my group and there are at least 2 members right now in final stages of the disease trying to get approvals for transplants. If you are only basing your information on research and your personal battle then you are missing the personal battle side of the disease that I see every day. I understand that you would have that impression from research but there is no way I will not be upset when i see members dying in their final days of battling with no livers available. I agree to disagree with your view but will post.
Peppy, I disagree with you COMPLETELY!
You stated”
“Fatty liver, in and of itself, does not progress to serious liver disease”
You are completely incorrect. I was diagnosed initially with Fatty Liver Disease when I was 35 and I immediately began by recommended weight loss and exercise journey. Unfortunately, to find out that in 1 year, I would be placed on disability as my health and life was completely changed due to a progression of Fatty Liver Disease through each stage of NASH and I now Cirrhosis with Portal Hypertension and varacies. My Hepatologist told me that Fatty Liver Disease and the Progression to Nash is on its way to affecting 1 in 4 people in the US in the next 10 years.
All Processed foods, which includes white breads, sugars, flour and rice do aggravate your Body. Chemically altered foods which does include meats can also progress damage to your Liver as well as other organs and body functions should you not make dietary changes. I do not know if Gluten Intolerance makes liver Disease worse or not. However, I can say as of a week ago, I was told by a Hepatologist after a colonoscopy and EGD, I may now have celiac disease which has manifested itself in many ways including anemia, chronic bowel issues, pain and other medical problems. I know this means that I will need to make further dietary changes.
I do not know you or your medical credentials or experience. In addition your education and advice sounds like the advice and information I was told by family practice Doctor when diagnosed initially with Fatty Liver Disease. They were grossly misinformed just as you are. I do agree with you that you can not let your emotions overtake the facts or treatment of this disease. However, I do believe you must be knowledgeable of what you share or base your recommendations on and I can say with 100% certainty you are incorrect. We must be sure to be knowledgeable when we share information as many people will look upon what we say as Gospel or Fact. In many cases it can make the difference in Life or Death. Please be more informed or cautious as to what you share or state as fact or opinion as you can affect innocently as it may be, the life or mental health of another individual.
You posted this on
December 16 2011
My mom just passed away on
December 16 2012
She had just turned 55 in August. She to was one of the patients who were patted on the head and though they didn’t say “you’ll be fine ” instead they said ” okay well lets see you in two more weeks after we give this new medication time to take affect for one of many other factors that was not nearly even a fraction to the real issue of a fatty liver. Yes we did find out that she had been diagnosed in may 2011. However NEVER WERE WE ONCE TOLD ABOUT IT/THE DEPTH if it or YET TREATED FOR IT OTHER THAN THE BASIC COMMON SENCE OF GENERAL HEALTH THAT APPROPRIATE FOR THE HUMAN BODY. So we went about having impression that she was back to being better . for the most part–(in the meantime she had suffered from a stroke and a mild stroke. Still no treatment or even depth on this liver situation being a key factor to her decline. My mom was my best friend , and we were inseparable. I would do anything for her – and that’s y I agreed to hospice the three last days before her death. She wanted to just come home. Still under the impression that she could graduate out of care possibly. In reality at that point I knew it was thenone last thing I could do for the only person who gave me life. She wanted to not hurt any more. Going to ER I was asked within 6 minutes of speaking to the dr info about her transplant status. I froze and could not speak. Terrified- by the fact that we were in an illness/disease in which that could of and should have been an issue from day one . if in fact it was going to be neglected up to the last week of her life. i explained all i knew, had done, all that i felt and also the despair my mom had been denied. she was baffled by the lack of . Not only our situation was limited but at that point even all procedures and even iv meds/saliene fluid was very minimal. due to her b. pressure dropping below 60 and under. so yes it was painful and for years she hurt and it always was present yet none of us knew the depth or seriousness. we had just gotten used to dealing with how to ease it. not always did this come though. the drs are pretty good about helping pain management and perscribing a good supply of meds that half of she didnt take or need. and no this didnt help or impair her liver issue. she had a handful of dr”s and yet the order was written for an abundance of MRI and catscan a and blood work and ultra sound and digital image scans of her body in all areas . Only once she was filmed for the lower back in which then I asked to also take images of her abdominal area. Then we had the actual depth of our situation. Still nothing on reversible measures or how and what we had to look forward to. So MUCCH of this I could go on about for maybe the rest of my life. No let me rephrase that : I know that there are many patients that get left behind. Insurance isn’t always a factor either. It is a great help but what I’m saying is sometimes the unfinished business that our mothers, family friends, neighbors and, even those next to us on the street ; get left behind is due to the whole health care / pharmasudicles industry. Yes we all are aware of coverage issues determining our health for sure. So take it upon yourself to really listen to what their not saying. Then do your own research. Now I’ve done some and it came much to late for my mama Terri. However the best treatment you can truly do for the body is learn it. seriously consider your diet and make your body your temple. if you want to live and not die finding out just how terrible the premature preventable and sad horror is then u i know will consider my plea. im sorry for those who found out too late and I’m sorry for those who simply didn’t find out. And to Michele , my heart is fully in your search to get the very best for your daughter. I’m also a mother of of two girls not much difference in age and I can only expect that every child will get a long lived and beautiful life that is bombarded by happiness, joy, beauty, knowledge, privilege and love and compassion. I know that your family will see her do very well in life and go through it thankful for your strength and courage to take great concern so seriously and graciously genuine. To all of you who read this please know my mother was one of the littlest headstrong and increadibly caring for others first -ladies known. she was the one everyone wanted to resemble. many really did. she had talent, skill, smarts and a knack for the best crafting/decorating most had ever seen. she always was requested for her stage presence and eye to create. A cool lady for sure. she had other journeys to travel and i know she will be missed more than life itself. ALWAYS a GIVING, loyal, and good hearted person. Please ask questions and go to the library for your answers. This I know now will be a disease that has other long living options if it is fully taken charge over. Best of health to you readers!
Great advice on diet. For some of us it leads to an extreme colitis…based on your video explaining fructose as the rootcause…i ditched grapes, bananas, and apples..really any fruit for snacks and replaced them with roasted potatoes, broccoli, spinach, and zuchini. I think fruit is just as dangerous as pork, veggies being important during recovery. And I think with maple syrup you are given dieters too much freedom..a lot of us were food addicts.
I was diagnosed with fatty liver disease in May 2011 at a free clinic due to not having any insurance at the time. They were wonderful, sent me to a nephrologist and to a hepatologist and to a surgeon for a biopsy of a mass that was on my liver. Unfortunately, the surgeon could not help me as he said the mass was in a place they could not get to do do a biopsy but all felt it was benign. No one suggested a biopsy of my liver in general would be helpful. MRI and cat scan shows inflammation, though no scarring. Beginning stages of NASH. The hepatologist at MSU in Ann Arbor MI said to go find a primary care doctor for symptom management with diet and exercise. All they can do is monitor once a year to see if it worsens. So I purchased insurance through my work and obtained a family doctor. He was awesome the first visit, very thorough. When I had a set back with retaining water, I went to see him and he asked me, what it was that he was supposed to do because he was not a specialist in liver disease. I do not feel like I am taken seriously by either the specialist or my family doctor, or my friends. Fatty liver disease can easily become NASH without knowing. Even if only a small percentage of people with fatty liver disease go on to progress with NASH, you are STILL AT RISK people. You need to be monitored. We need to raise awareness and doctors need to help us instead of passing the buck. I don’t want to get lost in the cracks but I feel helpless.
I was diagnosed with cirrhosis in 2010. I was told from my hep dr that it was from having a fatty liver that progressed to nash..so believe me that fatty liver is not to be overlooked! i think that a liver panel is something that should be done as a routine test . It could save your life!