Has anyone got the same symptoms?

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I was diagnosed with GS on Monday (I'm 22) it was only picked up due to me having fat on my liver. Another thing i don't understand is the fat as I'm a size 6 and don't drink. My bilirubin has been high consistently since the age of 14, I cannot recall the last time it was normal. So surprised i didn't get diagnosed sooner! I have jaudice constantly my eyes and skin are forever yellow, I'm beyond tired, i wake up with bruises i feel weak a lot. I get stomach pain alot and it's hard to know whats causing what. I am a bit angry as my doctor just brushes the whole condition off saying theres no need for treatment as everything is sort lived! I've had jaudice for months!! and even when it does go I'm only free of it for a few days anyone experiencing these symptoms?? Anyones advice? I also have have IBS, I've had 3 stomach ulcers, fat on my liver and now this.

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  • Posted

    My sympathies! I don't have your problems, but I do have Gilbert's Syndrome and a completely unrelated liver condition - a giant simple hepatic cyst. It can be very difficult to know which symptoms relate to which condition. The only suggestion that I can make is that you consult a doctor specialising in liver conditions rather than relying on a generalist. If you are in the UK it might be worth asking for a referral, or a second opinion, from a consultant at a regional liver unit where they will employ real experts in the field. I'm not sure what systems exist elsewhere in the world, but referral to a liver specialist must be possible.

    Hope that this helps.

    Good luck!

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    • Posted

      Thank you for your response, i was referred to a liver specialist for a fibroscan. However the results came back fine so i was discharged, confused really as it only means I dont have permanent damage... not that there's nothing wrong? Do you know if you can appeal these things or do i just have to go with what the professionals have already said? Thanks again

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  • Posted

    I too had a non-alcoholic fatty liver, and have GS.  Based on my experience:

    1) recognize that in changing your lifestyle it takes time for results to become apparent.

    2) be sure to get at least 8 hrs of sleep every night;

    3) As much as possible remove ALL corn/fructose products from your diet.. 

    4) use virgin olive oil only.

    5) make sure you get enough vitamin D and magnesium

    6) try to get regular exercise.  Does not have to be brutal, just keep moving.

    7) As much as possible remove ALL corn/fructose products from your diet..  (I mean it - it is worth repeating.)

    8) keep your weight under control.  Don't try for rapid weight loss, just eat less than you burn over the long term.

    Good Luck!!

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    • Posted

      Thank you for the advice, i will these and hope for a positive results! Is vit d an issue when suffering with GS as I'm vitamin D deficient have been the last 3years. Also currently under weight so not very hopefully on the whole weight issue. Thanks again x

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  • Posted

    At 22 it's unusual to have all those problems , check in your family and deceased relatives if it runs in the family so you know where to start.

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  • Posted

    It is great that you are not overweight.  feel free to disregard my comments regarding weight.

    Lots of people are D deficient and don't know it.  I just mentioned D and magnesium because I found that when I took a modest daily dose of both I felt much better.  A quality multivitamin won't hurt either. 

    Many GS sufferers seem to be afflicted with IBS, so again watch what you eat.  Seems that minimal spices are recommended.   Maybe try a good probiotic and see if it makes any difference. 

    Each GS person kinda has to feel their own way through this, as symptoms and solutions do vary.

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