Misdiagnosed Gilbert’s syndrome?

Posted , 5 users are following.

Hello!

I'm a 22 year old female with colitis (not active) and recently I have been undergoing symptoms like nausea, significant swelling in my upper right side, abdominal pain mostly in my upper right side, loss of appetite, back pain, sweating, itching, constant tiredness, and bruising under my arms. Due to these symptoms, I've had numerous blood tests, a colonoscopy, an endoscopy, and a ultrasound on my upper right side all in the last two months-all coming back okay besides an enlarged bile duct. My total bilirubin levels were elevated as well as my MPV levels, so they said it is likely due to Gilberts Syndrome. Due to my symptoms, I'm really confused because Gilberts doesn't seem to have the same symptoms other than the elevated bilirubin. I am really concerned and my diet is REALLY strict at the moment (no hard foods) and I just need some further guidance. The abdominal swelling and bruising just makes me think they are missing something, but since I'm not a doctor and I cannot give myself much clarity, I was hoping to get some responses from other people who have gone through similar experiences or have ever been misdiagnosed. And thank you for taking time to read this, I appreciate it very much.

0 likes, 3 replies

3 Replies

  • Posted

    look up the Gilbert's support page on Facebook. I think you'll find it quite enlightening. Also, look at he subreddit on Gilbert's. Youre not alone

  • Posted

    You need to promote good brain health and take in lots of omega 3 supplements.

  • Posted

    Have u had an ultrasound of ur gallbladder done? Doctors can suspect Gilbert's based on normal LFT's but u may have varying indirect/unconjugated bilirubin. I have Gilbert's and when I'm ill, stressed, not sleeping well, poor diet then I won't feel so great. This will show in blood work and sometimes I will have a tinge of yellow in my eyes and skin. Over time and better circumstances it settles.

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