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Fairly new to GS, it is HORRIBLE! Will it ever go?

Posted , 4 users are following.

Jobun
Jobun

Hi,

I was recently diagnosed with GS when I was 16. I went to hospital for 4 days after having terrible nausea, fatigue, jaundice and abdominal pain severely. I had all tests (blood, Ct scan) and was sent home with no clear answer and told to just take paracetamol.Only thing found was high billirubin count. After another month I was finally diagnosed. It was a horrible experience and I don't go one day without having some kind of pain. Every morning I have nausea and I am constantly tired from easy tasks. I lost over a stone and only just starting to re put weight on. It's not very nice as I can't do things that any other teenager would want to do. I keep thinking it's all in my mind but am glad it is not just me and would like to thank all for sharing there experiences! * But will I always have GS? *

Thanks

0 likes, 3 replies

3 Replies

  • EmilyandBilly
    EmilyandBilly Jobun

    Posted

    Jobun,

    I am not a doctor or a scientist, but I have spent a lot of time in hospitals, learned a lot  from my time and I have a mind for science. So to try to answer your question, will you always have Gilbert's...well that is not a straight forward answer. But that's a good thing!

    From my bias understanding of this disease that we have, it is genetic. This means that our bodies will always have the genetic code present. However we now know that genes can actually be "turned off" or "turned on". So just because you have the genetic potential for GS in your body, that does not mean that you are destined to experience symptoms your whole life. So there is hope! Science tells us so.

    For some fun web videos about how all this stuff works, I recomened looking up the ameba sisters on YouTube.

    So as people with GS, it is our personal job to figure out what we can do to make our experience of GS as slight as possible. it is a process of trial and error, but we have to keep trying. Right now I have started to take Milk Thistle in small doses, and apple cider vinegar to help out my liver. What are you trying to lesson your symtoms?

    emily

  • catherine1996
    catherine1996 Jobun

    Posted

    I am only 18 and I was diagnosed about a year ago and I'm glad its not just me that finds this difficult to deal with.

    I have always been told by my doctors that there is no certain amount of time that we could have this, we could have it for the rest of our lives but then ( hopefully) it could also just go away.

  • claire90847
    claire90847 Jobun

    Posted

    My husband has managed to feel so much better by changing his diet.  Things that worked for him:

    no alcohol

    no preservatives or chemicals or artificialadditives of any kind - eat as clean as possible - read labels, if you don't understand what is listed there, don't eat it!

    juice veggies especially beetroot

    eat as much kale/ greens as you can

    try to eat organic veg if possible, but if not dont worry just eat lots if veggies as thats better than not eating them

    I know this isnt easy but it's worth it!

    I wish you all the best and let me know if I can give more info

    Claire

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