i was just told my count was high, 4.2, and frankly i dont have symptoms of anything. i agree with whoever said to just think about health. this "disease" has been called one just so that technicians can classify the flux from "normal".

Hi

I've just read your post about Gilbert's Syndrome. I was diagnosed last Wednesday and boy oh boy what a relief!!! I am 23, female and have been suffereing for the last two years.

If you would take the time to read my story I would like to tell you what I have been through with Gilbert's Syndrome.

Its started two years ago when I got cronic diarrhea (very bad every morning). This was accompanied by a very gassy stomach and craps in my abdomine. At the same time I noticed I was extremely fatigued. I don't have to get up for work early every morning and being quite young this worried me greatly.

As time went by more and more symptoms developed. I would get patchy fever when my temperature would soar, I would feel very weak at times, I would be constantly thirsty - I can never get enough to drink, I could get patches of Depression where I would just want to cry for no apparant reason and also my dealing with stress would never work out too well either, I would be an awful colour (very pale and off yellowish), if I eat sweets I would get this strange shaking and my vision would got a bit off, I usually I have a really good memory and have achieved top grades in most things, but at uni I would find that I could not concentrate for as long as I used to and I could get quite confused about the easiest of things, for a period of about two weeks at about 10pm every night I would feel extremely nauseous and would have to fight not being sick (thankfully that passed), if I went out drinking I would wake up the next morning and feel as if I had been punched in the stomach and would be very tender for a couple of days. Also being young you would think that excercise wouldn't bother me too much. I took up cycling and after my first bike ride (on the flat for about 14 miles) I nearly fell asleep at the wheel of my car (I did make it home ok and slept for about 5 hours). That is definately not natural for a young person!

Once of the most scary symptoms so far had to be when large clumps of my hair would fall out in the shower. I don't mean the usual anount that should fall out, I mean enough to block the plug hole in one go. I would find my hair totally covering the seat of my car, work chair, when I got out of a friends car I would have to try and clear up the hair I left - it was so much it was embarrasing. As you can imagine being female and having your hair falling out so dramatically is a very stressful experience indeed!

When I went to the doctors they tried to fob me off saying I had irritable bowel syndrome, which I knew I hadn't as the symptoms I had were nothing like that condition. They did numerous blood tests, there and then they told me I was slightly jaundice, they thought nothing of it so obviously I didn't either.

I was sent to a specialist where I had to go for an extremely painful Sigmoidoscapy test (Put a camera places where you don't want it to go!) They were checking to see if I had Colitis or Crohns disease (thankfully I haven't)

Then I had to endure a number of cock up from my doctors. When the test results came in, I went down and the doctors said everything was normal and sent me home. When I re-visited (3 months later) another said that I should have been sent back to the specialist for further investigations and there was a letter in my file with specific instructions. Great more time wasted! 6 months later my new appointment came through. Where this specialist said as soon as I walked throught the door, I think you have Gilbert's syndrome and we are going to do one more blood test to confirm! And they did!

Even two years down the line I still have cronic diarrhea everyday, stomach pains, fatigue, still look a funny colour at times. Even though I have got some bloody horrible symptoms, I can tell you how much of a relief it is to know I am not imagining the things I have felt (as when a doctor tells you theres nothing wrong with you its quite distressing)

The other symptoms come in patches. Its different everytime but at least I know what it is and can now do something about it at long last! I have always eaten a low saturated fat diet so at least I have had that right all this time. Now its time to get the rest of my life sorted so I can live more comfortably with Gilberts. At least as far as they know its not harmful, just a bit unpleasant.

I wish I was like you and had no symtoms. Your very lucky.

I agree wholeheartedly. I too was diagnosed with Gilbert's Syndrome after having blood tests done. My liver numbers were elevated a little bit so the doctor asked me if I wanted to do another test to see if I had Gilbert's. I went ahead as I wanted to know why my number was high for liver. I did the blood test, and then the fasting routine and went in again the next day for a fasting blood test. The results came back positive for Gilbert's.

The doctor told me that I won't even notice that I have the disease; only when/if I get sick and don't eat for a few days as my skin may turn yellowish. He said it is not life threatening and there is nothing to do about it.

That was 6 years ago and I have no symptoms whatsoever that I know of.