autoimmune hepatitis????????????

[lisaph93]

hi, i am 34 yrs old and got gastro and food posoning 16 years ago- since then i have suffered continual nausea, digestive complaints etc to the point i now barely eat at all- i lost over half my body weight within the 1 st year of illness and got stuffed around by so many doctors - no one knew why i  was so ill- however - many years on and now with many other health concerns - secondary to the weightloss etc such as SEVERE osteoporosis- congestive heart failure and gastroparesis - my liver enzymes have been elevated for about a year at least- the a.s.m.a test came back positive 3 times and negative once- i am sore in my liver and gallbladder region - i ache all the time- all sorts of side effects etc and i do have a yellow tinge to my face- i have a fatty liver and ascitites in the pelvis- so far i have only had ultrasound on the liver and blood tests to do with this - doctors are afraid of being 'invasive' but wont give me a TRUE diagnosis either! now they dont do the a.s.m.a. test here anymore so its hard to tell whether i DO have autoimmune hep or not! i am awaiting referal to a hepatologist and gastroenterologist again but over the years all the gastro tests were normal - i do have a shrivelled and hard to see gall bladder too- but i dont know what this is- i was diagnosed as 'terminal' and 'untreatable' a year and a half ago and supposedly should not be alive now- i have already had 3 silent infarcts and obviously the fact i am so underweight- by 20-25kg has a big affect on me too! i am on no medication other than anti emetic to stop the nausea - i am unable to eat much and get by on really small high sugar snacks a few times a day - i am dying - my children and husband are so mad at the docs for not picking this up sooner - its been 16 years!!!!!!! but they were too quick to presume it was 'anorexia ' and i had to keep going into treatment for that even though they then refered me back to gastro each time as i clearly was not anorexic at all! what do i do? docs look at me now as a lost cause. a waste of time like i am dead anyway or something and everything is 'too invasive' but i want answers!!!!! could this have been here since the symptoms began from the food posioning or is it secondary to my dietary lifestyle etc of the last 16 yrs- how do i get a diagnosis? my tests are roughly like this - with no deficiency other than b12 and vitamin d - low platelets - usually raised e.s.r for 16 yrs - non specific ! liver at present is - alt is 32, ast is 56 alp is 105, ggt is 36 - phospate and potassium  is quite high tho not 'serious' .birilubin is fine!creatinine slightly highish and serum glucose is low- any help please - i really want to live as long as possible - just ned some guidance...............thanku so much - lise

[Jody515]

Hi, I am so sorry for all your problems & wish I could help you more. The only thing I really know about this is that your alt & ast numbers are not that high.
What I would suggest to you is to go to the liver disorders forum & there are much more knowledgeable people there regarding all liver issues that may be able to provide you with more then I can offer.
There is also a gastro doctor forum you can look upunder the forums part.  It should be on the right hand side of the list of forums, that is probably your best bet in getting an answer.
Best wishes to you,
Jody