Gilberts Syndrome....or is it????

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I was diagnosed with GS about 6 years ago after I went through a period of constant nausea. It was quite bad back then, I felt nauseated all day/night for around 2 weeks and I lost a lot of weight - I'm 5 11 and I weighed 8st 3lb!  I just couldn't face eating, although I was never actually sick, I just felt like I could have been at any second and I had to jump off the train many times on the way home.  I saw 4 different doctors and one eventually said I had GS due to my liver function tests.

It did get better though and I was re-tested again a few years later and everything was fine - did that mean GS had gone away?  I've never been symptom free for more than 2-3 months and I usually run on a 4 week cycle where I can feel fine but then for a few days I feel very bloated, nauseated and empty all the time, even when I've eaten.

I was wondering if people have reactions to foods and how long it takes for the reaction to start.  I haven't noticed any reactions to any foods as such and I generally eat the same things each day - cereals, brown bread, rice, lots of veg, potatoes.

I use to get bad hangovers so I quit drinking 15 years ago and I haven't had a drop since.  I try and avoid alcohol at all costs now because I seem to be very sensitive to it, even going to the pub but not drinking anything would cause me to feel really hungover the next day - but my wife said this is the nocebo effect - which is the opposite to pacebo where I am creating an illness because I think alcohol is associated with my syptoms.

It makes me very anti-social at work, I haven't been on a team lunch in years!

Has anyone else had a blood test and everything was in normal levels but still getting symptoms?  One doctor said I had either hypogycemia or hyperglycemia, I can't remember which but getting conflicting diagnosis doesn't help.

thanks smile


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  • Posted

    Following this thread as I read it I thought.. This is me! Having the same issues down to the constant nausea and hypoglycemia. I also quit drinking for the same reasons as yourself. I wonder Ian if your symptoms are not liver related but somewhere else. The first thing my doctor called it was IBS and put me on a low FODMAPS diet. This has helped somewhat with the nausea but it's still coming in cycles. I'd be interested to follow your thread and see what answers pop up. Best of luck.

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    • Posted

      I have often wondered if it's something else too.  The nausea pretty much happened overnight, I went out for a meal and then the next morning I felt really sick and it didn't go away hence my first trip to the Doctors.  That was 6 years ago now and I've never felt the same since.  I've often described it as being poisoned, it feels like I have been intoxicated with something, like it's difficult to pinpoint exactly where I dont feel well if that makes sense.

      When I read about GS it mentioned foods that can cause a reaction like rice, potatoes and bread but I eat a lot of these, it's pretty much all I eat in fact but they actually make me feel better?  

      I've never noticed any intolerance to paracetamol either and that’s on the list too.

      I think one of the problems is the symptoms are so common across so many different illnesses.  I casually read something about Hepatitis C and I had all the same symptoms so I went straight to the Doctor and had a test - which was negative.  I've also had h-pylori test which also has similar symptoms, diabetes, gallbladder....all negative!  I almost wanted it to be something so at least I could have treatment!

      Have you tried keeping a diary?  I have but then when I go a week or 2 without any symptoms I think yey I am better so I stop recording it....only to find it comes back again a few weeks later! I'm going to start one today becuae I feel really sick today sad

      It does feel like a cycle within the body rather than an intolerance to something though because I've never noticed an instant reaction to anything.

      They say stress is a cause but I end up stressing about having it or that I can't do anything about it which probably makes it worse!!

      One thing I have noticed is that I tend to feel constipated before I start to feel sick, it kind of gets gradually worse so I usually know that I am going to start feeling sick within a day or 2. I also then usually go more frequently during the days when I feel sick and this can help me feel better - although it makes me feel hungrier and more empty - sorry for the detail, I don't actually know if there is any correlation between the 2.

      I know this sounds bad but I does make me feel better to know I am not the only one suffering like this!!!  It drives me mad to be honest!

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  • Posted

    Following also. Never heard of this and will be asking my GI doctor about it. 
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