Re: Liver history and Symptoms..

[Guest guest]

Wow - some history - - you poor thing ! I can only go by my own

experience and I just want you to be ok with waiting a month. I have been

waiting a YEAR for any help and complete diagnosis for my condition - I have AIH

and PBC and I just decided to get educated in this on my own during the waiting

period - my initial doctor visit took THREE months to get in and then he tossed

me into a HURRY UP AND WAIT period for a liver biopsy and that took three MORE

months and then 3 weeks for the follow up on that report and THEN he tossed me

aside and said " go to Banner " and THAT took yet ANOTHER three months - - ugh !

In all that time I felt I could best learn from my own signals from my own body

and decide for myself what I could do to help ME along in the meantime. I

bought the book " Liver Cleansing Diet " by Cabot. It started me eating

and doing the RIGHT foods - not foods " I " chose but ones GOOD FOR MY LIVER - - I

then got some knowledge in

THAT book that lead me (and a dear support group friend Harper ) to another

wonderful book - Hepatitis and Liver Diseases by Dr. Palmer. Combined

those books started me on the path of healing and changing and feeling confident

in my body signals and what they meant at the time. One of my major problems

was itching and you don't mention that so I'm guessing your albumin is not real

high. In any case, I took each lab result that I found disturbing and I did a

complete search in the computer on anything and everything I could find. Each

lead me to the same round about conclusions and I felt it was all related. Just

put into the address bar NASH or STAINABLE IRON and see what happens. If you

can't find the right search engine go to GOOGLE - I know you probably have done

this but I found LOTS on stainable iron - I had

" NO " stainable iron but I wanted to know WHAT that meant so I did find and read

and educate myself on that also. If you can't afford the books go to a book

store and just take one down and sit and read it where you are. It helps. Take

a pen and paper to jot things down and then computer it. Gosh I sure wish I

could offer more advice and help in some small way. Look up your BEST medical

facilites and attempt to go to a university if you can. I live in a small town

and was not satisfied either and was so glad I moved on. If you don't get the

answers you need find someone who WILL answer you or do what you want - it's

YOUR body and YOU ARE PAYING THEM !!!! Follow your instincts and signals but

don't get so overwhelmed that you panic. Remember the worst thing you can do

for your liver - EVEN A PERFECTLY HEALTHY LIVER is to stress out. It is the

worst thing. Find the source that you look up to for guidance and spiritual

help and rely on THAT to

take it away and relax. In the meantime just educate yourself as best you can

and THAT will guide you to the right sources. I am going to see what I can find

online and get back to you in here with sites if I find something that might

help you. When this group starts reading your email you will get responds that

will help - I'm sure ! Everyone here seems so knowledgeable and been through

stuff that we all can relate to.

Good luck and stay in here for help and support.

Dee

[ ] Liver history and Symptoms..

Hello everyone. I am new to this group, but have some knowledge about

NASH, and I am having some symptoms, but first I would like to

explain my liver history. I am a 29 year old male from Ky who has a

history of elevated ALT enzymes for 3 years and a gall bladder

removal in 2001 due to gall stone blockage. The ALT for the past 3

years has been 100 to about 150 range in that 3 year period, with

alot of fluctuations during that time. So during these years through

2004 to 2007 I have been told that I had 'fatty liver' by various

doctors. They made that diagnosis based on the elevated ALT enzymes.

All dr's I have been to, just made me feel that it was 'more common

to have fatty liver', and that it could eventually turn into

cirrhosis, maybe 20+ years from now. So being told that it may take

20 years for cirrhosis to develop I didn't worry that much about it

as I have should. So through 2004 and most of 2007 to about August of

that year, I had decided to get a ultrasound done on my liver,

because I was getting concerned, specially since through 2007 I have

gained weight rapidly from April to Oct 2007, about 30 pounds during

this time. The weight gain though was due to me over eating from

stress because of what was going on in my life through this period of

time. So in August 2007 the ultrasound showed:

'Mild fatty infiltration of the liver with coarse texture.'

I thought at this time that I am going to really have to do something

about this 'fatty liver' that I was told that I have. Then I left 2

months ago by , and then I am at October 2007, and recent blood tests

show my ALT at 157, which was a new all time high, but only roughly 7

to 10 points higher then before, but now the AST was high as well,

but nothing that was concerning to me since it was in the 50 range.

Then also in October, I noticed I had some problems with both my arms

going numb when I was sleeping at night, they would just go numb

whenever I layed down. This was scaring me because I thought maybe it

was my heart not pumping blood efficiently or possibly from pinched

nerves, and also I was thinking possibly that it could be diabetic

related (even though I have not been diagnosed with diabetes). This

night I noticed my arms being numb I had tested my blood sugar and it

was 240, so that was a clear picture to me that I have and have had

diabetes, and I do not know for how long, but it couldn't have been

longer then a year or 2. After I seen how high my blood sugar was I

decided the next day to start a 1500 calorie a day diet. I was happy

to start this diet, as in addition to this diet, I have finally

stopped drinking soda and coffee as well. I thought this was going to

be great, and I thought that it was going to help reduce my liver

enzymes, and make my liver normal again. In the past I have struggled

with weight loss/gain over the years. I have weighed 315 pounds in

the past and have lost all that weight until I weighed 168 pounds.

That was back in year 2000. Since the year 2002 though I have started

gaining weight slowly back, because of poor eating habits.

Well back to the 1500 calorie diet.. On this diet I have made extra

effort to consume alot of high nutritious foods, mostly fruits and

vegetables, with some meat here and there. Now at the time I started

this 1500 calorie diet, I weighed 365 pounds (the highest weight I

have ever been). I felt great the first 10 days of this diet and

weight loss was occurring very fast. Well in around the 10th day or

so, I started to have various symptoms appear: dull pain and

tenderness in my right side and along the front of my stomach (which

I strongly feel is my liver hurting), consistent yellow colored

stools, fatigue, and just something wrong with my thinking that I

just could not describe properly to my Dr. My Dr decided to get a

stool sample from me, get a CAT scan of my liver, and take a liver

panel to see if anything improved since I started dieting. I thought

my ALT would be lower, but now it was in the 230 range, and I was

devastated, because its nearly double of what it use to be for the

past years! At this time I am getting severely worried that the

enzymes were this high and that I am experiencing symptoms from

something that appears to be liver related and then some symptoms

that I do not know origin of. Well I just kept on the 1500 calorie a

day diet another 5 days, then I decided to go to the emergency room

because of how I been feeling, specially the liver pain and

this 'mental thing' that I still have been having consistently. I was

in the emergency room for 8 hours, the Dr done cat scan of the head

and abdomen. He ruled out anything in the brain and didn't have any

answer for my 'mental feeling'. But on the CT scan he noted that he

seen infiltrated fatty liver. He done a liver panel, and it revealed

now that my ALT was 330 and now my AST has hit 95! So now I am

thinking that there is something very wrong! From what I said in the

past I use to have ALT 100 to 150 consistently for years, now it

jumps from 157 to 330 in roughly 3 weeks! I left the ER eventually

and he diagnosed me with 'hepatitis; etiology unknown'. Also I had

forgot to mention another symptom that I have been having during

these past days that I started this diet, was alot of bloating, gas,

and just plain alot of noise from my stomach after I ate. No matter

what I ate the noise would last for 2 to 3 hours!

I decided to make an appointment to see my gastrologist. He tested me

for just about everything liver related. Everything came back

negative or normal except, my ALT 337 and AST 95. This is roughly 5

days since the other liver panel I had, and the ALT seems to have

plateued at 330 range. This was on 11-28. I asked him that I want to

get a liver biopsy done, and that I just am at the end of my rope and

I do not care about the risk involved. I am freaking out at this

time, because I am thinking that I have cirrhosis. I get the liver

biopsy done 2 days later, results took another 3 days. During this

time same symptoms present, but I have decided to eat more calories,

around 3000 a day. Since I started eating more the symptoms started

to seem a bit tapered off, specially the 'mental symptoms', I still

have the 'mental symptoms' still though.

Well my biopsy report came back, and it says the following:

A: Moderate steatosis.

B: Mild chronic inflammation within portal tracts without piecemeal

necrosis (Scheuer grade 1)

C: Slight portal fibrosis with no bridging fibrosis (Scheuer stage 1)

D: Trace amounts of stainable iron.

I was glad I didn't have cirrhosis, but I still felt ill. I was upset

though at B, C, and D as it was something new I had to worry about. I

am concerned about all of this, but the 'stainable iron' bothers me,

as I cannot seem to find much about this on the internet. Even in a

study that I found of 50 liver biopsies done on NASH patients, and

none show stainable iron. My gastrologist told me not to worry about

it, well I do worry about it, and I worry about this whole issue, as

I have found out I have NASH and the recent finding that I have found

is that a fast weight loss can make it progress much worse! Which I

feel is what started this whole thing in the first place, the rapid

weight loss. My gastrologist seems to not be knowledgeable with this,

because he tells me there is nothing to worry about and that weight

loss can reverse it. I have stated that I am extremely worried, and

that there is something wrong with my liver beyond what the liver

biopsy says, I told him I don't believe my liver is functioning

properly. (I base this on the mental symptoms I have been having)

He says on the blood tests nothing shows him that this is happening,

because the blood tests are normal, even the Ammonia checked on 3

different times have been in normal ranges, 100 UG/DL being the

highest, and his lab chart shows 27 to 102 UG/DL to be within normal

ranges. So still the only thing showing on the blood tests is the ALT

330 - AST 95. I know at this point that I should be seeing a

hepatologist, but I don't know what to do, because it is a month

waiting period to see one! In the meantime I feel that I am dying. I

tell my wife this, this makes her upset. My wife and family said I

appear normal to them, but I tell them my brain just does not feel

right. I am so very worried, and yet at the same time I want to think

positive, but its so hard!

Gastrologist mentions maybe I have depression! That downright made me

upset! I know how I feel and this is not depression I told him. I am

through with the gastrologist because they say there is nothing more

they can do specially since everything is normal, but just to come

back in a month to check liver panel again. They did mention for me

to see a hepatologist though since they cannot do anything more. So

here I am, I have all these symptoms, and I cannot get into a

hepatologist for a month! What I ask of anybody that reads this, is

if they have had or have any of the symptoms that I am having, and I

would like any input/opinions/ recommendations from anybody concerning

all of this.

I so much appreciate it!!

-

________________________________________________________________________________\

____

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know-it-all with Mobile. Try it now.

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[Guest guest]

,

sorry to hear about your situation! I believe you're right in

thinking it was the rapid weight loss that is at least partly

responsible for your current situation.

I've been on a strict diet since the summer as well, and when I

started with it I was very strictly told not to lose more than a

maximun of 1 kg per week, as anything more than that could cause

fattening of the liver. Due to my very low energy need I am not

able to lose more than that even on the 800-900 calories per day

diet I've been on, so that was not a problem. But even so, my

liver values did initially go up a bit and I actually got rather

worried about it. It was nothing like your situation, though, and

the doctors seemed rather sure that it was the diet that was

causing it and that it wasn't alarming. I was allowed to carry on

with the diet, and now my values are all normal (and I'm still

dieting).

I don't know what you should do in your situation, apart from

making sure that you don't lose weight too rapidly and make sure

you have a doctor who understands the connection. In the long run

it is definitely a good thing to lose weight, and providing there

isn't too much permanent damage to the liver, the situation

should indeed eventually reverse itself, just as your doctor

said. Your feelings of mental disorientation may be caused by the

liver enzymes. Many people with severe liver problems report such

feelings (sorry that I can't explain it better, but there are

others here who can).

I hope you get some help and clear answers about your situation

soon. Have you tried to get an appointment with another

hepatologist a bit sooner than in one month? If you can't get an

appointment, it might be an idea to have some basic lab tests

before the appointment (ASAT, ALAT, AFOS etc.), just to see if

the situation is changing, and for your own peace of mind. That's

what I did when my values were slightly up in the autumn and the

next gastro appointment was weeks away. I just asked a GP for the

tests, maybe you could do the same?

Take care,

Jaana

Helsinki, Finland

16.12.2007 10:18, kirjoitti:

>

>

> Hello everyone. I am new to this group, but have some knowledge about

> NASH, and I am having some symptoms, but first I would like to

> explain my liver history. I am a 29 year old male from Ky who has a

> history of elevated ALT enzymes for 3 years and a gall bladder

> removal in 2001 due to gall stone blockage. The ALT for the past 3

> years has been 100 to about 150 range in that 3 year period, with

> alot of fluctuations during that time. So during these years through

> 2004 to 2007 I have been told that I had 'fatty liver' by various

> doctors. They made that diagnosis based on the elevated ALT enzymes.

> All dr's I have been to, just made me feel that it was 'more common

> to have fatty liver', and that it could eventually turn into

> cirrhosis, maybe 20+ years from now. So being told that it may take

> 20 years for cirrhosis to develop I didn't worry that much about it

> as I have should. So through 2004 and most of 2007 to about August of

> that year, I had decided to get a ultrasound done on my liver,

> because I was getting concerned, specially since through 2007 I have

> gained weight rapidly from April to Oct 2007, about 30 pounds during

> this time. The weight gain though was due to me over eating from

> stress because of what was going on in my life through this period of

> time. So in August 2007 the ultrasound showed:

> 'Mild fatty infiltration of the liver with coarse texture.'

>

> I thought at this time that I am going to really have to do something

> about this 'fatty liver' that I was told that I have. Then I left 2

> months ago by , and then I am at October 2007, and recent blood tests

> show my ALT at 157, which was a new all time high, but only roughly 7

> to 10 points higher then before, but now the AST was high as well,

> but nothing that was concerning to me since it was in the 50 range.

> Then also in October, I noticed I had some problems with both my arms

> going numb when I was sleeping at night, they would just go numb

> whenever I layed down. This was scaring me because I thought maybe it

> was my heart not pumping blood efficiently or possibly from pinched

> nerves, and also I was thinking possibly that it could be diabetic

> related (even though I have not been diagnosed with diabetes). This

> night I noticed my arms being numb I had tested my blood sugar and it

> was 240, so that was a clear picture to me that I have and have had

> diabetes, and I do not know for how long, but it couldn't have been

> longer then a year or 2. After I seen how high my blood sugar was I

> decided the next day to start a 1500 calorie a day diet. I was happy

> to start this diet, as in addition to this diet, I have finally

> stopped drinking soda and coffee as well. I thought this was going to

> be great, and I thought that it was going to help reduce my liver

> enzymes, and make my liver normal again. In the past I have struggled

> with weight loss/gain over the years. I have weighed 315 pounds in

> the past and have lost all that weight until I weighed 168 pounds.

> That was back in year 2000. Since the year 2002 though I have started

> gaining weight slowly back, because of poor eating habits.

>

> Well back to the 1500 calorie diet.. On this diet I have made extra

> effort to consume alot of high nutritious foods, mostly fruits and

> vegetables, with some meat here and there. Now at the time I started

> this 1500 calorie diet, I weighed 365 pounds (the highest weight I

> have ever been). I felt great the first 10 days of this diet and

> weight loss was occurring very fast. Well in around the 10th day or

> so, I started to have various symptoms appear: dull pain and

> tenderness in my right side and along the front of my stomach (which

> I strongly feel is my liver hurting), consistent yellow colored

> stools, fatigue, and just something wrong with my thinking that I

> just could not describe properly to my Dr. My Dr decided to get a

> stool sample from me, get a CAT scan of my liver, and take a liver

> panel to see if anything improved since I started dieting. I thought

> my ALT would be lower, but now it was in the 230 range, and I was

> devastated, because its nearly double of what it use to be for the

> past years! At this time I am getting severely worried that the

> enzymes were this high and that I am experiencing symptoms from

> something that appears to be liver related and then some symptoms

> that I do not know origin of. Well I just kept on the 1500 calorie a

> day diet another 5 days, then I decided to go to the emergency room

> because of how I been feeling, specially the liver pain and

> this 'mental thing' that I still have been having consistently. I was

> in the emergency room for 8 hours, the Dr done cat scan of the head

> and abdomen. He ruled out anything in the brain and didn't have any

> answer for my 'mental feeling'. But on the CT scan he noted that he

> seen infiltrated fatty liver. He done a liver panel, and it revealed

> now that my ALT was 330 and now my AST has hit 95! So now I am

> thinking that there is something very wrong! From what I said in the

> past I use to have ALT 100 to 150 consistently for years, now it

> jumps from 157 to 330 in roughly 3 weeks! I left the ER eventually

> and he diagnosed me with 'hepatitis; etiology unknown'. Also I had

> forgot to mention another symptom that I have been having during

> these past days that I started this diet, was alot of bloating, gas,

> and just plain alot of noise from my stomach after I ate. No matter

> what I ate the noise would last for 2 to 3 hours!

>

> I decided to make an appointment to see my gastrologist. He tested me

> for just about everything liver related. Everything came back

> negative or normal except, my ALT 337 and AST 95. This is roughly 5

> days since the other liver panel I had, and the ALT seems to have

> plateued at 330 range. This was on 11-28. I asked him that I want to

> get a liver biopsy done, and that I just am at the end of my rope and

> I do not care about the risk involved. I am freaking out at this

> time, because I am thinking that I have cirrhosis. I get the liver

> biopsy done 2 days later, results took another 3 days. During this

> time same symptoms present, but I have decided to eat more calories,

> around 3000 a day. Since I started eating more the symptoms started

> to seem a bit tapered off, specially the 'mental symptoms', I still

> have the 'mental symptoms' still though.

>

> Well my biopsy report came back, and it says the following:

>

> A: Moderate steatosis.

> B: Mild chronic inflammation within portal tracts without piecemeal

> necrosis (Scheuer grade 1)

> C: Slight portal fibrosis with no bridging fibrosis (Scheuer stage 1)

> D: Trace amounts of stainable iron.

>

> I was glad I didn't have cirrhosis, but I still felt ill. I was upset

> though at B, C, and D as it was something new I had to worry about. I

> am concerned about all of this, but the 'stainable iron' bothers me,

> as I cannot seem to find much about this on the internet. Even in a

> study that I found of 50 liver biopsies done on NASH patients, and

> none show stainable iron. My gastrologist told me not to worry about

> it, well I do worry about it, and I worry about this whole issue, as

> I have found out I have NASH and the recent finding that I have found

> is that a fast weight loss can make it progress much worse! Which I

> feel is what started this whole thing in the first place, the rapid

> weight loss. My gastrologist seems to not be knowledgeable with this,

> because he tells me there is nothing to worry about and that weight

> loss can reverse it. I have stated that I am extremely worried, and

> that there is something wrong with my liver beyond what the liver

> biopsy says, I told him I don't believe my liver is functioning

> properly. (I base this on the mental symptoms I have been having)

>

> He says on the blood tests nothing shows him that this is happening,

> because the blood tests are normal, even the Ammonia checked on 3

> different times have been in normal ranges, 100 UG/DL being the

> highest, and his lab chart shows 27 to 102 UG/DL to be within normal

> ranges. So still the only thing showing on the blood tests is the ALT

> 330 - AST 95. I know at this point that I should be seeing a

> hepatologist, but I don't know what to do, because it is a month

> waiting period to see one! In the meantime I feel that I am dying. I

> tell my wife this, this makes her upset. My wife and family said I

> appear normal to them, but I tell them my brain just does not feel

> right. I am so very worried, and yet at the same time I want to think

> positive, but its so hard!

>

> Gastrologist mentions maybe I have depression! That downright made me

> upset! I know how I feel and this is not depression I told him. I am

> through with the gastrologist because they say there is nothing more

> they can do specially since everything is normal, but just to come

> back in a month to check liver panel again. They did mention for me

> to see a hepatologist though since they cannot do anything more. So

> here I am, I have all these symptoms, and I cannot get into a

> hepatologist for a month! What I ask of anybody that reads this, is

> if they have had or have any of the symptoms that I am having, and I

> would like any input/opinions/recommendations from anybody concerning

> all of this.

>

> I so much appreciate it!!

>

> -

[Guest guest]

This week I sent a post noting that celiac.com has an article this month on

relationships between celiac disease and liver disease, including autoimmune

hepatitis.

Harper

In a message dated 12/16/07 7:37:25 PM, pvkarate@... writes:

>

> Hi , What's was your diagnosis after the biopsy, PBC or AIH? Have you

> ever been tested for celiac disease, or viral hepatitis? Celiac Sprue can

cause

> elevated liver enzymes. I was just diagnosed with Celiac Friday so I know.

> Is your ALP ALK PHOS elevated higher than 250? A slight elevation is normal

> with an elevated ALT, but too high may mean PBC, it just depends what the

> pathologist said about your biopsy. Now for the iron. My biopsy actually came

back

> with a trace of stainable iron also, but perfectally normal other than that.

> The iron means nothing, unless you have hemochromatosis. It's easy to check

> for. It's just a blood test for total iron, ferritin & TIBC. You can look up

> hemochromatosis on the internet. It's the #1 genetic disease in the world. If

> the iron is only #1 on the iron scale, it is absolutely nothing to worry

> about. Hope this helps. Kathy

>

>

>

**************************************

See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

Hi , What's was your diagnosis after the biopsy, PBC or AIH? Have you ever

been tested for celiac disease, or viral hepatitis? Celiac Sprue can cause

elevated liver enzymes. I was just diagnosed with Celiac Friday so I know. Is

your ALP ALK PHOS elevated higher than 250? A slight elevation is normal with

an elevated ALT, but too high may mean PBC, it just depends what the pathologist

said about your biopsy. Now for the iron. My biopsy actually came back with a

trace of stainable iron also, but perfectally normal other than that. The iron

means nothing, unless you have hemochromatosis. It's easy to check for. It's

just a blood test for total iron, ferritin & TIBC. You can look up

hemochromatosis on the internet. It's the #1 genetic disease in the world. If

the iron is only #1 on the iron scale, it is absolutely nothing to worry about.

Hope this helps. Kathy

[ ] Liver history and Symptoms..

Hello everyone. I am new to this group, but have some knowledge about

NASH, and I am having some symptoms, but first I would like to

explain my liver history. I am a 29 year old male from Ky who has a

history of elevated ALT enzymes for 3 years and a gall bladder

removal in 2001 due to gall stone blockage. The ALT for the past 3

years has been 100 to about 150 range in that 3 year period, with

alot of fluctuations during that time. So during these years through

2004 to 2007 I have been told that I had 'fatty liver' by various

doctors. They made that diagnosis based on the elevated ALT enzymes.

All dr's I have been to, just made me feel that it was 'more common

to have fatty liver', and that it could eventually turn into

cirrhosis, maybe 20+ years from now. So being told that it may take

20 years for cirrhosis to develop I didn't worry that much about it

as I have should. So through 2004 and most of 2007 to about August of

that year, I had decided to get a ultrasound done on my liver,

because I was getting concerned, specially since through 2007 I have

gained weight rapidly from April to Oct 2007, about 30 pounds during

this time. The weight gain though was due to me over eating from

stress because of what was going on in my life through this period of

time. So in August 2007 the ultrasound showed:

'Mild fatty infiltration of the liver with coarse texture.'

I thought at this time that I am going to really have to do something

about this 'fatty liver' that I was told that I have. Then I left 2

months ago by , and then I am at October 2007, and recent blood tests

show my ALT at 157, which was a new all time high, but only roughly 7

to 10 points higher then before, but now the AST was high as well,

but nothing that was concerning to me since it was in the 50 range.

Then also in October, I noticed I had some problems with both my arms

going numb when I was sleeping at night, they would just go numb

whenever I layed down. This was scaring me because I thought maybe it

was my heart not pumping blood efficiently or possibly from pinched

nerves, and also I was thinking possibly that it could be diabetic

related (even though I have not been diagnosed with diabetes). This

night I noticed my arms being numb I had tested my blood sugar and it

was 240, so that was a clear picture to me that I have and have had

diabetes, and I do not know for how long, but it couldn't have been

longer then a year or 2. After I seen how high my blood sugar was I

decided the next day to start a 1500 calorie a day diet. I was happy

to start this diet, as in addition to this diet, I have finally

stopped drinking soda and coffee as well. I thought this was going to

be great, and I thought that it was going to help reduce my liver

enzymes, and make my liver normal again. In the past I have struggled

with weight loss/gain over the years. I have weighed 315 pounds in

the past and have lost all that weight until I weighed 168 pounds.

That was back in year 2000. Since the year 2002 though I have started

gaining weight slowly back, because of poor eating habits.

Well back to the 1500 calorie diet.. On this diet I have made extra

effort to consume alot of high nutritious foods, mostly fruits and

vegetables, with some meat here and there. Now at the time I started

this 1500 calorie diet, I weighed 365 pounds (the highest weight I

have ever been). I felt great the first 10 days of this diet and

weight loss was occurring very fast. Well in around the 10th day or

so, I started to have various symptoms appear: dull pain and

tenderness in my right side and along the front of my stomach (which

I strongly feel is my liver hurting), consistent yellow colored

stools, fatigue, and just something wrong with my thinking that I

just could not describe properly to my Dr. My Dr decided to get a

stool sample from me, get a CAT scan of my liver, and take a liver

panel to see if anything improved since I started dieting. I thought

my ALT would be lower, but now it was in the 230 range, and I was

devastated, because its nearly double of what it use to be for the

past years! At this time I am getting severely worried that the

enzymes were this high and that I am experiencing symptoms from

something that appears to be liver related and then some symptoms

that I do not know origin of. Well I just kept on the 1500 calorie a

day diet another 5 days, then I decided to go to the emergency room

because of how I been feeling, specially the liver pain and

this 'mental thing' that I still have been having consistently. I was

in the emergency room for 8 hours, the Dr done cat scan of the head

and abdomen. He ruled out anything in the brain and didn't have any

answer for my 'mental feeling'. But on the CT scan he noted that he

seen infiltrated fatty liver. He done a liver panel, and it revealed

now that my ALT was 330 and now my AST has hit 95! So now I am

thinking that there is something very wrong! From what I said in the

past I use to have ALT 100 to 150 consistently for years, now it

jumps from 157 to 330 in roughly 3 weeks! I left the ER eventually

and he diagnosed me with 'hepatitis; etiology unknown'. Also I had

forgot to mention another symptom that I have been having during

these past days that I started this diet, was alot of bloating, gas,

and just plain alot of noise from my stomach after I ate. No matter

what I ate the noise would last for 2 to 3 hours!

I decided to make an appointment to see my gastrologist. He tested me

for just about everything liver related. Everything came back

negative or normal except, my ALT 337 and AST 95. This is roughly 5

days since the other liver panel I had, and the ALT seems to have

plateued at 330 range. This was on 11-28. I asked him that I want to

get a liver biopsy done, and that I just am at the end of my rope and

I do not care about the risk involved. I am freaking out at this

time, because I am thinking that I have cirrhosis. I get the liver

biopsy done 2 days later, results took another 3 days. During this

time same symptoms present, but I have decided to eat more calories,

around 3000 a day. Since I started eating more the symptoms started

to seem a bit tapered off, specially the 'mental symptoms', I still

have the 'mental symptoms' still though.

Well my biopsy report came back, and it says the following:

A: Moderate steatosis.

B: Mild chronic inflammation within portal tracts without piecemeal

necrosis (Scheuer grade 1)

C: Slight portal fibrosis with no bridging fibrosis (Scheuer stage 1)

D: Trace amounts of stainable iron.

I was glad I didn't have cirrhosis, but I still felt ill. I was upset

though at B, C, and D as it was something new I had to worry about. I

am concerned about all of this, but the 'stainable iron' bothers me,

as I cannot seem to find much about this on the internet. Even in a

study that I found of 50 liver biopsies done on NASH patients, and

none show stainable iron. My gastrologist told me not to worry about

it, well I do worry about it, and I worry about this whole issue, as

I have found out I have NASH and the recent finding that I have found

is that a fast weight loss can make it progress much worse! Which I

feel is what started this whole thing in the first place, the rapid

weight loss. My gastrologist seems to not be knowledgeable with this,

because he tells me there is nothing to worry about and that weight

loss can reverse it. I have stated that I am extremely worried, and

that there is something wrong with my liver beyond what the liver

biopsy says, I told him I don't believe my liver is functioning

properly. (I base this on the mental symptoms I have been having)

He says on the blood tests nothing shows him that this is happening,

because the blood tests are normal, even the Ammonia checked on 3

different times have been in normal ranges, 100 UG/DL being the

highest, and his lab chart shows 27 to 102 UG/DL to be within normal

ranges. So still the only thing showing on the blood tests is the ALT

330 - AST 95. I know at this point that I should be seeing a

hepatologist, but I don't know what to do, because it is a month

waiting period to see one! In the meantime I feel that I am dying. I

tell my wife this, this makes her upset. My wife and family said I

appear normal to them, but I tell them my brain just does not feel

right. I am so very worried, and yet at the same time I want to think

positive, but its so hard!

Gastrologist mentions maybe I have depression! That downright made me

upset! I know how I feel and this is not depression I told him. I am

through with the gastrologist because they say there is nothing more

they can do specially since everything is normal, but just to come

back in a month to check liver panel again. They did mention for me

to see a hepatologist though since they cannot do anything more. So

here I am, I have all these symptoms, and I cannot get into a

hepatologist for a month! What I ask of anybody that reads this, is

if they have had or have any of the symptoms that I am having, and I

would like any input/opinions/recommendations from anybody concerning

all of this.

I so much appreciate it!!

-

[Guest guest]

Thanks Harper, I did see your post. What I wonder is, which came first, the

chicken or the egg? Probably what I've read is that I was born with Celiac, (my

dad was diagnosed at 50) and the Celiac gave me the PBC. It makes me mad though

that the doctors didn't catch my Celiac sooner. I asked to be tested long ago

and they said it wasn't necessary, I'm one of the people who have no symptoms.

Maybe I would have never gotten PBC is I would have gone on a gluten diet years

ago. My son gets his results back tomorrow. He's only 14 but does have alot of

the symptoms.

Thanks for your info, always welcome.

Kathy Phx/AZ

Re: [ ] Liver history and Symptoms..

This week I sent a post noting that celiac.com has an article this month on

relationships between celiac disease and liver disease, including autoimmune

hepatitis.

Harper

In a message dated 12/16/07 7:37:25 PM, pvkarate@... writes:

>

> Hi , What's was your diagnosis after the biopsy, PBC or AIH? Have you

> ever been tested for celiac disease, or viral hepatitis? Celiac Sprue can

cause

> elevated liver enzymes. I was just diagnosed with Celiac Friday so I know.

> Is your ALP ALK PHOS elevated higher than 250? A slight elevation is normal

> with an elevated ALT, but too high may mean PBC, it just depends what the

> pathologist said about your biopsy. Now for the iron. My biopsy actually

came back

> with a trace of stainable iron also, but perfectally normal other than that.

> The iron means nothing, unless you have hemochromatosis. It's easy to check

> for. It's just a blood test for total iron, ferritin & TIBC. You can look up

> hemochromatosis on the internet. It's the #1 genetic disease in the world.

If

> the iron is only #1 on the iron scale, it is absolutely nothing to worry

> about. Hope this helps. Kathy

>

>

>

**************************************

See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

With me, it was the other way round. I got the Celiac disease

diagnosis this summer, and AIH in 2004. I was tested for Celiac

in 2004, but the test came back negative. But I think the

tendency for all autoimmune diseases, including Celiac, we are

born with, and it may well be that a gluten diet contributes to

the problems and even acts as a trigger.

Jaana

Helsinki, Finland

17.12.2007 5:52, pvsok kirjoitti:

>

>

> Thanks Harper, I did see your post. What I wonder is, which came first,

> the chicken or the egg? Probably what I've read is that I was born with

> Celiac, (my dad was diagnosed at 50) and the Celiac gave me the PBC. It

> makes me mad though that the doctors didn't catch my Celiac sooner. I

> asked to be tested long ago and they said it wasn't necessary, I'm one

> of the people who have no symptoms. Maybe I would have never gotten PBC

> is I would have gone on a gluten diet years ago. My son gets his results

> back tomorrow. He's only 14 but does have alot of the symptoms.

> Thanks for your info, always welcome.

> Kathy Phx/AZ

>

> Re: [ ] Liver history and Symptoms..

>

> This week I sent a post noting that celiac.com has an article this month on

> relationships between celiac disease and liver disease, including

> autoimmune

> hepatitis.

> Harper

[Guest guest]

All the talk of these extremely low calorie diets concern me. It could be the

very low level diet may not have possibly contributed to the weight loss and

fatty liver concerns experienced but also to the difficulty of weight loss

Jaana report (Body needs food to get that metabolism going).

I would recommend talking with your Doctors about being referred to Registered

Dietitians who are the experts on taloring a diet to meet your needs best and

promote the most optimal and SAFE weight loss plan. When finding a Dietitian you

may ask your hep MD for a referral to assure you are working with a Registered

Dietitian who have experience with liver disease.

I must devulge that I myself am a Registered Dietitian.

I do not have Liver Disease myself. As you have all read; my Mother had PBC.

She had lethargy and slept often. She did not have the confusion until the

last year.

It was told to her that it was elevated Ammonia levels that caused the

confusion. A blood test could obtain information to determine if

confusion/disorientation is caused by my Ammonia levels or can be ruled out. If

it is elevated ammonia; there is treatment.

I want everyone to know how amazing I feel you all are. You are a phenominal

support to each other. I wish my Mother had the opportunity to be involved here.

I think it could have made a difference in her outcome.

I have found that with my own battle this past year with Breast Cancer that my

support group served as a source of strength and gave me the positive attitude

to face my battle head on. I have heard several times that there have been

studies that show that people who participate in support groups do better than

those who do not.

I wish you all a happy and healthy new year.

Keep advocating for yourselves. Never be afraid to ask your Doctors questions

and get second opinions. Stay strong. The mind is more powerful that you can

imagine.

Jody

Maine

Jaana Fogl <jfogl@...> wrote:

,

sorry to hear about your situation! I believe you're right in

thinking it was the rapid weight loss that is at least partly

responsible for your current situation.

I've been on a strict diet since the summer as well, and when I

started with it I was very strictly told not to lose more than a

maximun of 1 kg per week, as anything more than that could cause

fattening of the liver. Due to my very low energy need I am not

able to lose more than that even on the 800-900 calories per day

diet I've been on, so that was not a problem. But even so, my

liver values did initially go up a bit and I actually got rather

worried about it. It was nothing like your situation, though, and

the doctors seemed rather sure that it was the diet that was

causing it and that it wasn't alarming. I was allowed to carry on

with the diet, and now my values are all normal (and I'm still

dieting).

I don't know what you should do in your situation, apart from

making sure that you don't lose weight too rapidly and make sure

you have a doctor who understands the connection. In the long run

it is definitely a good thing to lose weight, and providing there

isn't too much permanent damage to the liver, the situation

should indeed eventually reverse itself, just as your doctor

said. Your feelings of mental disorientation may be caused by the

liver enzymes. Many people with severe liver problems report such

feelings (sorry that I can't explain it better, but there are

others here who can).

I hope you get some help and clear answers about your situation

soon. Have you tried to get an appointment with another

hepatologist a bit sooner than in one month? If you can't get an

appointment, it might be an idea to have some basic lab tests

before the appointment (ASAT, ALAT, AFOS etc.), just to see if

the situation is changing, and for your own peace of mind. That's

what I did when my values were slightly up in the autumn and the

next gastro appointment was weeks away. I just asked a GP for the

tests, maybe you could do the same?

Take care,

Jaana

Helsinki, Finland

16.12.2007 10:18, kirjoitti:

>

>

> Hello everyone. I am new to this group, but have some knowledge about

> NASH, and I am having some symptoms, but first I would like to

> explain my liver history. I am a 29 year old male from Ky who has a

> history of elevated ALT enzymes for 3 years and a gall bladder

> removal in 2001 due to gall stone blockage. The ALT for the past 3

> years has been 100 to about 150 range in that 3 year period, with

> alot of fluctuations during that time. So during these years through

> 2004 to 2007 I have been told that I had 'fatty liver' by various

> doctors. They made that diagnosis based on the elevated ALT enzymes.

> All dr's I have been to, just made me feel that it was 'more common

> to have fatty liver', and that it could eventually turn into

> cirrhosis, maybe 20+ years from now. So being told that it may take

> 20 years for cirrhosis to develop I didn't worry that much about it

> as I have should. So through 2004 and most of 2007 to about August of

> that year, I had decided to get a ultrasound done on my liver,

> because I was getting concerned, specially since through 2007 I have

> gained weight rapidly from April to Oct 2007, about 30 pounds during

> this time. The weight gain though was due to me over eating from

> stress because of what was going on in my life through this period of

> time. So in August 2007 the ultrasound showed:

> 'Mild fatty infiltration of the liver with coarse texture.'

>

> I thought at this time that I am going to really have to do something

> about this 'fatty liver' that I was told that I have. Then I left 2

> months ago by , and then I am at October 2007, and recent blood tests

> show my ALT at 157, which was a new all time high, but only roughly 7

> to 10 points higher then before, but now the AST was high as well,

> but nothing that was concerning to me since it was in the 50 range.

> Then also in October, I noticed I had some problems with both my arms

> going numb when I was sleeping at night, they would just go numb

> whenever I layed down. This was scaring me because I thought maybe it

> was my heart not pumping blood efficiently or possibly from pinched

> nerves, and also I was thinking possibly that it could be diabetic

> related (even though I have not been diagnosed with diabetes). This

> night I noticed my arms being numb I had tested my blood sugar and it

> was 240, so that was a clear picture to me that I have and have had

> diabetes, and I do not know for how long, but it couldn't have been

> longer then a year or 2. After I seen how high my blood sugar was I

> decided the next day to start a 1500 calorie a day diet. I was happy

> to start this diet, as in addition to this diet, I have finally

> stopped drinking soda and coffee as well. I thought this was going to

> be great, and I thought that it was going to help reduce my liver

> enzymes, and make my liver normal again. In the past I have struggled

> with weight loss/gain over the years. I have weighed 315 pounds in

> the past and have lost all that weight until I weighed 168 pounds.

> That was back in year 2000. Since the year 2002 though I have started

> gaining weight slowly back, because of poor eating habits.

>

> Well back to the 1500 calorie diet.. On this diet I have made extra

> effort to consume alot of high nutritious foods, mostly fruits and

> vegetables, with some meat here and there. Now at the time I started

> this 1500 calorie diet, I weighed 365 pounds (the highest weight I

> have ever been). I felt great the first 10 days of this diet and

> weight loss was occurring very fast. Well in around the 10th day or

> so, I started to have various symptoms appear: dull pain and

> tenderness in my right side and along the front of my stomach (which

> I strongly feel is my liver hurting), consistent yellow colored

> stools, fatigue, and just something wrong with my thinking that I

> just could not describe properly to my Dr. My Dr decided to get a

> stool sample from me, get a CAT scan of my liver, and take a liver

> panel to see if anything improved since I started dieting. I thought

> my ALT would be lower, but now it was in the 230 range, and I was

> devastated, because its nearly double of what it use to be for the

> past years! At this time I am getting severely worried that the

> enzymes were this high and that I am experiencing symptoms from

> something that appears to be liver related and then some symptoms

> that I do not know origin of. Well I just kept on the 1500 calorie a

> day diet another 5 days, then I decided to go to the emergency room

> because of how I been feeling, specially the liver pain and

> this 'mental thing' that I still have been having consistently. I was

> in the emergency room for 8 hours, the Dr done cat scan of the head

> and abdomen. He ruled out anything in the brain and didn't have any

> answer for my 'mental feeling'. But on the CT scan he noted that he

> seen infiltrated fatty liver. He done a liver panel, and it revealed

> now that my ALT was 330 and now my AST has hit 95! So now I am

> thinking that there is something very wrong! From what I said in the

> past I use to have ALT 100 to 150 consistently for years, now it

> jumps from 157 to 330 in roughly 3 weeks! I left the ER eventually

> and he diagnosed me with 'hepatitis; etiology unknown'. Also I had

> forgot to mention another symptom that I have been having during

> these past days that I started this diet, was alot of bloating, gas,

> and just plain alot of noise from my stomach after I ate. No matter

> what I ate the noise would last for 2 to 3 hours!

>

> I decided to make an appointment to see my gastrologist. He tested me

> for just about everything liver related. Everything came back

> negative or normal except, my ALT 337 and AST 95. This is roughly 5

> days since the other liver panel I had, and the ALT seems to have

> plateued at 330 range. This was on 11-28. I asked him that I want to

> get a liver biopsy done, and that I just am at the end of my rope and

> I do not care about the risk involved. I am freaking out at this

> time, because I am thinking that I have cirrhosis. I get the liver

> biopsy done 2 days later, results took another 3 days. During this

> time same symptoms present, but I have decided to eat more calories,

> around 3000 a day. Since I started eating more the symptoms started

> to seem a bit tapered off, specially the 'mental symptoms', I still

> have the 'mental symptoms' still though.

>

> Well my biopsy report came back, and it says the following:

>

> A: Moderate steatosis.

> B: Mild chronic inflammation within portal tracts without piecemeal

> necrosis (Scheuer grade 1)

> C: Slight portal fibrosis with no bridging fibrosis (Scheuer stage 1)

> D: Trace amounts of stainable iron.

>

> I was glad I didn't have cirrhosis, but I still felt ill. I was upset

> though at B, C, and D as it was something new I had to worry about. I

> am concerned about all of this, but the 'stainable iron' bothers me,

> as I cannot seem to find much about this on the internet. Even in a

> study that I found of 50 liver biopsies done on NASH patients, and

> none show stainable iron. My gastrologist told me not to worry about

> it, well I do worry about it, and I worry about this whole issue, as

> I have found out I have NASH and the recent finding that I have found

> is that a fast weight loss can make it progress much worse! Which I

> feel is what started this whole thing in the first place, the rapid

> weight loss. My gastrologist seems to not be knowledgeable with this,

> because he tells me there is nothing to worry about and that weight

> loss can reverse it. I have stated that I am extremely worried, and

> that there is something wrong with my liver beyond what the liver

> biopsy says, I told him I don't believe my liver is functioning

> properly. (I base this on the mental symptoms I have been having)

>

> He says on the blood tests nothing shows him that this is happening,

> because the blood tests are normal, even the Ammonia checked on 3

> different times have been in normal ranges, 100 UG/DL being the

> highest, and his lab chart shows 27 to 102 UG/DL to be within normal

> ranges. So still the only thing showing on the blood tests is the ALT

> 330 - AST 95. I know at this point that I should be seeing a

> hepatologist, but I don't know what to do, because it is a month

> waiting period to see one! In the meantime I feel that I am dying. I

> tell my wife this, this makes her upset. My wife and family said I

> appear normal to them, but I tell them my brain just does not feel

> right. I am so very worried, and yet at the same time I want to think

> positive, but its so hard!

>

> Gastrologist mentions maybe I have depression! That downright made me

> upset! I know how I feel and this is not depression I told him. I am

> through with the gastrologist because they say there is nothing more

> they can do specially since everything is normal, but just to come

> back in a month to check liver panel again. They did mention for me

> to see a hepatologist though since they cannot do anything more. So

> here I am, I have all these symptoms, and I cannot get into a

> hepatologist for a month! What I ask of anybody that reads this, is

> if they have had or have any of the symptoms that I am having, and I

> would like any input/opinions/recommendations from anybody concerning

> all of this.

>

> I so much appreciate it!!

>

> -

---------------------------------

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Dear Jody,

many thanks for your concern! I hope your own health is

improving. It must have been a very difficult and frighening

experience for you.

I agree with you about the body needing a certain amount of

energy in order to keep the metabolism going. It's just that the

amount of energy required is very low in my case. For that very

reason I was banned from dieting by my doctors until my liver

values were stable.

I guess I am the exception that confirms the rule, so to speak,

because it has been very difficult to get the medical experts to

understand or in fact even believe the situation. The general

assumption is that if a person is overweight, he/she must eat the

wrong kind of food and too much of it. The latter, of course, is

true, but what is too much varies from person to person.

In my case, everything has been tried, and the fact of the matter

remains that as soon as my calorie intake clearly exceeds 1100

calories, I start putting on weight. It is not just an initial

gain that would then turn into weight loss, unfortunately. The

weight just keeps going up until I reduce the calorie intake back

to 800-1000. I've been like this all my life - how I wish I were

able to lose weight on a " normal " diet and envy those, who can!

The doctors have now OK'd my diet, because my liver seems to be

able to take it, all my labs are excellent and there is no sign

of any kind of diet related health problem. I might mention that

even when I was at my heaviest, my blood pressure, blood sugar,

cholesterol and triglyceride values were excellent, which

probably tells something about the type of food I normally eat

(veggies and fish, mostly). Even my liver wasn't fatty.

For the diet, I have just reduced the amount of food, and I feel

better, am more alert and my aches and pains have eased. In fact

(and I don't know if a dietitian finds this statement

shocking...) the doctor just pointed out that it would seem that

the people who have the longest life expectancy are the ones who

have a low blood pressure and who are slightly undernourished

(=have a reasonably low calorie intake).

For me, even exercise doesn't have the kind of effect I would

like it to have, so eating is the key. When younger, I was a very

active athlete, a vegetarian for over a decade, and still

overweight.

I have in fact met dieticians, and meeting one in the spring was

again agreed on during my latest visit to the doctors. The

hospital will arrange that. The aim is to try and make sure that

I get as many nutrients as possible from my limited energy

intake, also after the weight loss. In order to keep the weight

down I have to stay on a regime which most people would consider

a starvation diet. :-)

Having said all that, I can't stress strongly enough that I

appear to be a freak of nature of some sort, and what works for

me does not work for most people, nor is it necessary. I wouldn't

recommend anybody to cut down their eating to under 1000 calories

per day. Please correct me if I'm wrong, but I believe for most

people a daily reduction of 500 calories from the calculated

energy requirement is sufficient for losing weight. A reduction

like that is easy to accomplish and results in a healthy weight

loss of arounf 1 kg per week.

Extra weight that has been gained by eating too much of the wrong

kind of food can be lost by just leaving out the junk food.

Again, thanks for your concern, and I wish you a happier and

healthier new year!

Jaana

Helsinki, Finland

19.12.2007 4:48, Fred Berren kirjoitti:

>

>

> All the talk of these extremely low calorie diets concern me. It could

> be the very low level diet may not have possibly contributed to the

> weight loss and fatty liver concerns experienced but also to the

> difficulty of weight loss Jaana report (Body needs food to get that

> metabolism going).

> I would recommend talking with your Doctors about being referred to

> Registered Dietitians who are the experts on taloring a diet to meet

> your needs best and promote the most optimal and SAFE weight loss plan.

> When finding a Dietitian you may ask your hep MD for a referral to

> assure you are working with a Registered Dietitian who have experience

> with liver disease.

> I must devulge that I myself am a Registered Dietitian.

>

> I do not have Liver Disease myself. As you have all read; my Mother had PBC.

> She had lethargy and slept often. She did not have the confusion until

> the last year.

> It was told to her that it was elevated Ammonia levels that caused the

> confusion. A blood test could obtain information to determine if

> confusion/disorientation is caused by my Ammonia levels or can be ruled

> out. If it is elevated ammonia; there is treatment.

> I want everyone to know how amazing I feel you all are. You are a

> phenominal support to each other. I wish my Mother had the opportunity

> to be involved here. I think it could have made a difference in her

> outcome.

> I have found that with my own battle this past year with Breast Cancer

> that my support group served as a source of strength and gave me the

> positive attitude to face my battle head on. I have heard several times

> that there have been studies that show that people who participate in

> support groups do better than those who do not.

> I wish you all a happy and healthy new year.

> Keep advocating for yourselves. Never be afraid to ask your Doctors

> questions and get second opinions. Stay strong. The mind is more

> powerful that you can imagine.

> Jody

> Maine