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Starting around May of this year I went to a gastroenterologist for issues with acid-reflux and elevated bilirubin levels. I have been put on Nexium for acid reflux( actually classified as GERD now for me) and he diagnosed me with Gilbert's syndrome. However every check up i go back and get routine blood tests to check on the levels of the bilirubin. And every time I go back the levels are higher than they were the previous visit, and in Gilbert's they are supposed to fluctuate. After my last visit my tests showed they were extremely HIGH and my doctor ordered an abdominal ultrasound. The ultrasound didnt show anything. I want to know if there could be some other problem?? Oh and Im 16 years old if that helps

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Hi there, as far as I can tell there aren't any other issues since the doctor has taken a look at you for everything that you have. I think that if anything you may have been misdiagnosed with Gilbert's syndrome if that's not in line with a previous diagnosis. Have you seen another doctor to get a second opinion?
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I haven't seen another doctor yet, but they have a few other GI's at CHKD. Do you know what could be misdiagnosed as gilbert's syndrome?
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SkinnyTeen wrote:

I haven't seen another doctor yet, but they have a few other GI's at CHKD. Do you know what could be misdiagnosed as gilbert's syndrome?



No, but since the symptoms aren't consistent, I wonder if you are even suffering from it. Let me know how it turns out if you see another doctor, okay?
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I have been diagnosed with gilbert's syndrome 13 years ago. Lately I have discovered that its a misdiagnose. Unfortunately this problem is misdiagnosed by all the doctors. If any doctor observe prolonged hyperbilirubenamia, the misdiagnose it as gilbert's syndrome. Most of the time its not gilbert's syndrome. Its because of obstructions of bile ducts in liver. Bilirubin is not excreted properly due to obstructions so the bilirubin levels in blood rises. unfortunately ultra sound or any other scanner cannot show obstructions in the bile ducts. you can find it yourself if its gilbert's syndrome or bile duct obstruction by answering these questions to yourself.
1. Do you have difficulty in digestion? espeacially digestion of fat? Gilbert's syndrome has got nothing do hinder digestion. Only bile duct obstrution hinders digestion because bile helps in digestion it doesn't reach the intestines due to obstruction.
2. Do you have pain in liver? Gilbert's syndrome doesn't cause pain in liver. bile duct obstruction does
3. do you have fatty or enlarged liver? Gilbert's syndrome doesn't cause enlarged liver. bile duct obstruction does!
4. There are hell lot of other digestion/metabolism issues because of bile duct obstruction. Gilbert's syndrome is not at all a complication!
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