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Gilberts Syndrome

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  • Triggers for Gilbert’s syndrome.

    I have been diagnosed with GS a couple of years now. Last week I decided to cut out coffee from my diet, and it has made a big difference. I was getting a lot of stomach pain and bloating from it, but now the pain has gone. Does anyone else know of things that could make it worse? 

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  • Recently diagnosed with Gilbert's Syndrome

    Hi  I am 46 and just been diagnosed with Gilbert's syndrome due to bilirubin levels in blood being high on last few blood tests. I have had my gall bladder removed 20 years ago. The doctor told me that it is purely hereditary but no one else in my family has been diagnosed. She also said she...

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  • the facebook group

    I have twice asked to join the gilbert group on farcebook, but have neot received a response.  Is this group active? If you are a member could you ask why I have not received a reply?

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  • confused about GS

    Hello there.. I have recently been told I have elevated Bilirubin levels of 32.3, I have suffered over the last 18 months with various gastric problems and now see a very good GI (Dr Paine) My father has Haemochromotosis and when tested I carry one of those genes.. are these conditions related ? I am...

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  • Diagnosed years ago, but Biliruben levels are normal?

    I was diagnosed about 5 years ago with GS. My first work up showed me at 2.2 total, with .4 direct. Last year, I was at 1.9 total with 0.3 direct. I had blood work done again 2 days ago, and now I'm at 0.8 total with 0.2 direct? I know the levels can fluctate on an hourly basis, but was wondering...

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  • struggling with gilberts syndrome fatigue

    I've had gilberts syndrome my whole life, I'm in college and the fatigue is getting the best of me currently very jaundiced and I'm struggling to study and focus, does anybody have any advice for treating these issues?

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  • Gilberts and Exhaustion

    So I was diagnosed with Gilberts a few months back, even though I've known I have it for many years (my mum has it too, and its hereditary, so it only made sense). My biggest problem at the moment has been a constant crushing exhaustion, and I'm wondering if anyone else has experienced this?...

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  • Bilirubin levels up after Lipitor ??? Help

    Ok not sure if this is Gilbert's but hope someone can offer advise,, took Simvistatin for years to lower LDL,, I always fasted for 12 or more hours before blood tests.  My bilirubin has always been around 1.5 but never any issues.. Now Dr wanted me changed to Lipitor 40 mg... And test blood...

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  • Gallbladder removal problems with bile duct

    I have had MRI and endoscopy  for stomach pain and they have found my bile duct is 11mm with no known cause has anyone else heard of this have had stomach prob all my life relating to GS and they removed my gall bladder two years ago due to bilirubin stones

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  • Severe muscle aches

    I am a 52 year old male, and for years I kept saying to my mother, (then later, my wife), that my muscles throb with pain, my skin would look yellow and I was always so tired. My mother would tell me, these were just growing pains due to my rapid growth, (never explained the yellowing of my skin though)....

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  • Vitamins

    Could a vitamin (or something else) deficiency explain any of the GS symptoms? Do you have any? I'll try to do a B12 test next month.

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  • Could I have gilberts syndrome?

    Hi all, new to this group and trying to find some answers. I was admitted to hospital 2 months ago with severe stomach pain and jaundice. Had bloods taken, bilirubin was elevated so they done an ultrasound thinking I had gallstones. To cut a long story short my gallbladder, pancreas and liver looked...

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  • Bile malabsorption

    Also known as bile acid diarrhoea, many people may have it with GS. "When larger amounts of bile acids enter the large intestine, they stimulate water secretion and intestinal motility in the colon, which causes symptoms of chronic diarrhea." Sounds familiar to you?...

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  • Gilberts Syndrome as an Athlete

    My Struggle with Gilbert's Syndrome In 2016 every one of my fingernails turned a deep shade of purple. Being a generally healthy person, I was naturally concerned. So I visited my doctor and she instructed me to wait it out. A few weeks later my nails were a funny shade of yellow. My doctor ordered...

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  • Fatty liver Gilberts Syndrome

    Hi I was diagnosed at 16, I am now 24 and haven't experienced anything since being diagnosed until now. I struggled with alcohol from 20 until 9 months ago when I 100% quit. I was prescribed an antibiotic for a bladder infection, then fell terribly ill with gilberts the next day. I was throwing up...

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  • Gilbert's Syndrome symptoms have ruined my life.

    I found out I had Gilberts syndrome after a bad reaction to antibiotics in june last year and ever since I've been ill. My boyfriend is going to leave me. My sister has stopped talking to me after I didn't go to her wedding because I was ill. I am about to drop out of university a year away from...

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  • There is hope for Gilberts! I promise

    Im a 25 year old male who has been suffering from Gilberts Syndrome for about 4yrs now. Initially I had no idea what was wrong, especially since my whole life Ive been very healthy.   One day  when I was about 21 or 22 I began experiencing severe abdominal pain that would send cold...

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  • Antibiotics

    I react very strongly on certain antibiotics, which i need for dental problems. Anyone knows if there's another antibiotic that is better to take then Amoxilline? Thanks.

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  • Confusion: Am I experiencing Gilbert's symptoms?

    I was diagnosed with Gilbert's maybe around the age of 20 after a blood test which showed (slightly) elevated Bilirubin. I don't think that has really affected my health and I thought nothing of it until recently; I'd always been assured that Gilbert's showed no real symptoms to speak...

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  • Glucocorticoid effect on GS

    I have been diagnosed with Gilbert syndrome since 4 months after a long way of wrong diagnoses. Its been though for me and I have been so week. It all started when I was stress in exams and caught infection and took a strong antibiotic. And since then my life wasnt normal again. Now I have a cough that...

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  • Milk Thistle

    How comes that some people feel better while others get worse with milk thistle? It affects phase I of glucuronidation while GS happens in phase II, shouldn't make you better in theory.

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  • Fatty liver in pre employment medical test

    Dear Sir/madam              I have gone through a physical examination as a part of my pre employment medical tests and found that i have a fatty liver with SGPT & SGOT values mildly elevated. but my medical report is signed normal by the hospital.MY DOUBT IS WHETHER...

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  • Misdiagnosed with gilberts syndrome? Possible hep c!

    Hello everyone! I wanted to share my experience to see if anyone here has been misdiagnosed with Gilbert's syndrome.  I was diagnosed with gilberts syndrome when I was about 13. This was because our family doctor had discovered my mom had hepatitis C, and wanted to test the rest of the family...

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  • How a Doctor can say I am GS?

    Lab results always showed my bilirubin level high out of three or four tests. It was always up and Down but never below normal. Liver functions are normal but only problem is bilirubin. Is it a real finding that I am GS? Also, I took vitamin d and omega 3 for 3 months for my cholesterol. That resulted...

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  • Help with my teenager with Gilberts & Spherocytosis

    She was in hospital for 3 months in London last year and lost 2 stone. This year she has been good, put on the weight she lost, and seems healthy. But, she gets these bouts of diarrhoea, sickness & jaundice - all she can do is sleep. Does anyone have these symptoms after having the gallbladder...

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  • All my life .....Stomach trouble

    Hi, I am 45 years old and suffered with so many stomach symptoms over the years that I hope this information might help someone to not feel alone!!   As a child my stomach would make me lie down and rest and often my appetite would be very small. When the bad stomach passed I would be able...

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  • Gilberts Syndrome and a giant hepatic cyst

    Hi! I've known that I have Gilbert's Syndrome for about five years. It was discovered incidentally and, apart from an intolerance of alcohol and fatty food, I have never been aware of any symptoms that can be attributed to it. Having read what others have written on this forum, I guess I'm...

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  • Ther is hope for Gilberts Syndrome! I promise

    Im a 25 year old male who has been suffering from Gilberts Syndrome for about 4yrs now. Initially I had no idea what was wrong.   One day I began experiencing severe abdominal pain that would send cold chills across my body, as well as diarrhea  7-10x a day, Fatigue and Anxiety for years. ...

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  • Doctors need to do more research on Gilberts syndrome

    My 10 year old son has been diagnosed twice this year with GS. Both Paediatrician's have said it's psychological and he needs to see a dietician. Never mind that my son can hardly walk, is fatigued, suffers severe stomach pain 24/7, nausea, muscle pain, breathing difficulty and forgetfulness....

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  • 18 year old son has yellow eyes....

    They have progressively been getting worse over the past 4 months. I should have gotten him to a doctor the second he came home and said his friends were telling him his eyes were yellow. I thought just a bunch of kids being paranoid. Long story shortened...i saw last week his eyes were yellowing. His...

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  • Diet

    I have seen many controversial posts about the effect of calcium glucarate in patients with GS, what has been your experience with it or other supplements? My stomach cramps a lot during the day and there is no other explanation than my GS diagnosis, many here suffer as well with ghost symptoms. Also...

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  • Caffeine and yellow eyes

    Anyone know of a connection? I was diagnosed 19 years ago and my eyes have been yellow ever since. They were actually the clearest during my pregnancies, which surprised me. The only thing I am think is that I totally cut out caffeine while ttc and during pregnancy. I REALLY don't want to give it...

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