Re: Gilbert's Disease...Don't worry!

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.


Tweet