Young people with GS

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My daughter has recently been diagnosed with GS. She is 14 and suffering from several of the symptoms described with GS. Feeling sick and extremely tired are her worst problems. Also she has headaches every day and often tummyaches as well. She has for a long time described that pushing ache under the ribs.

Some of these symptoms have been with her for many years without us knowing about GS, now they have a reason.

My daughter is struggeling to keep up with school, she is clever and doing well, but her having to stay at home often is not good.

Anybody out there with teenage GS, or parents?

I have read a lot of very good info on this site, and if only I was the patient and not my daughter...this would perhaps be easier for an adult to manage, it is a lot to keep track of for a young girl at 14.

How do you manage that?

Also, the headaches..I have read that paracetamol is a bad idea since the liver is already struggeling, what kind of painkillers are better?

By the way...

Someone asked about bili-babies...my daughter turned yellow 2 days old, but recovered without light. Don't know if this is of any interest to you now.

I hope you will excuse my spelling. We are danish, but there is almost no info about GS in Denmark. Doctors seem to think it is no big deal....wrong!

Best regards

Christina

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9 Replies

  • Posted

    Hi Christina

    the funny thing is the liver is healthy however not able to rid the body of billi rubin as affectively as others so the paracetamol should not be harmful. I also suffered with a lot of headache as a teenager but was not diagnosed until early adulthood. As long as your daughters doctors say the liver is healthy it is only GS she is dealing with (which is enough on its own with the symptoms that occur) then lots of fruit, vegetables (not to starchy or night shade such as capcicum and eggplant) and as much water as she comfortably can drink then managing the tiredness is the best way to manage the symptoms. Many small meals is better than three large ones as well. I hope this has helped a little. There is very little information or interest from medical staff here in Australia also.

    Kind Regards Amy 

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    • Posted

      Thank you for your answer amy. Headaches were mostly a problem for you as a teenager I understand. Can I ask, when did that change for you? My daughter is sad that these aches could follow her the rest of her life.

      I have read elsewhere that GS changes as you grow older, think that is correct?

      I know GS acts differently from one person to another, but without scientific study we must listen to experience from others.

      Best regards

      Christina

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  • Posted

    I can only suggest some experiments with diet.  For many people it is a particular food that is the cause of the Gilberts Syndrome.  My problem is spices and after stopping spices I am very much better.

    This is a long slow process and you have to stay on a diet for a month or two to be sure that any diet is successful.

    Finding the trigger that causes the Gilberts Syndrome took me 6 months of testing various foods and my doctor was not helpful.  NOW he belives me and has found some research papers that support the idea of diet being a cause for many people.

    Did your doctor check for Crohn's disease and I have seen these two confused.?

    Dick

    Dick

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    • Posted

      Thank you Kwenda for your answer. Diets and teenagers do not mix well I am afraid. But I understand from what I read, and as you yourself have found, that we have to deal with that. My daughter gets angry and annoyed with me when she is feeling sick and tired, so it can be a struggle.

      My daughter has been tested and examined so that we know nothing else is wrong,

      including Chron's. She is fit and very active otherwise.

      Kind regards

      Christina

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  • Posted

    Hello Christina,

    My name is Chris and i am 17 years old..i was too diagnosed with gilbert´s syndrome recently after two blood tests and an ultrasound and i've been having some symptoms that can be a true annoyance.The worst of them is anxiety because i always feel like i have a more serious problem and that has seriously affected me as a student..a month ago i was the best student in my school and now i can't find time to do my homework because i keep thinking about it every single minute..so my advice is DONT let your kid get too anxious about it or it will have a huge impact on her. I've been struggling with headaches lately and that pushing ache under the ribs..my advice on this is to always take enough sleep and drink enough water.I would stay away from paracetamol because it can burden the liver (ask an expert) and my GS thing was triggered from antibiotics.

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    • Posted

      Thank you chris. I am so sad to hear how much you struggle, unfortunately this is what is happening in our house as well. We have tried to keep cool about it so that the stress does not make it worse, but watching my daughter being so ill is awfull. I want to change that but do not know where to start.

      I told my daughter about your comment, and for what it is worth she is glad not to be the only one struggeling in school because of GS.

      I too worry about serious thing being wrong with my daughter, but she has had a lot of tests. All that was ever found was GS, I have to remind myself of that to keep calm.

      I hope you will do well as a student, GS or not.

      Christina

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  • Posted

    Hi Christina. My son was diagnosed in year 10 of high school.

    It also explained a lot of feeling ill and bad stomach aches from a young age.

    Although the doctors said its a symptomatic with no side effects I think it's a little strange how everyone diagnosed it has life changing symptoms.

    How my son manages his condition he is now 18.

    Eating lots of vegetables a small amount of fruit at a time as fructose is hard for the liver to process.

    Meat and white meat fish.

    Limit potatoes and chips to once a week or fortnight depending on how his stomach feels and then only a small amount.

    Loads of rice cuscus and pasta

    He only drinks water and lots of it he's alway got s bottle of water on him. Green tea at night.

    No tea and coffee at all as caffeine is big no.

    Anything really that is quite pure so the liver has less stress.

    Ibuprofen pain killers only as a last resort.

    I've penicillin is good but obviously you can't take this all the time when my son has been ill before with other things and this has been proscribed his jorndaice had cleared up.

    This was a trial and error at first, and being a teenage boy he was very lax but a patter of feeling ill after I kept a food diary and how depressed he was after the ill bouts and the patter soon became apparent. He managed himself.

    Everyone seems different so a food diary is s must to

    Eliminate bad foods. Good luck it's not easy x

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    • Posted

      Thank you for your answer kay. I am hoping that my daughter will come to accept her illness and work with it.

      I have shown her all the comments we recieved and she is a bit more positive now knowing she is not alone. Also most comments include the same advice on food and drink, so hopefully this will persuade her that mummy is not being mean to her.

      Best regards

      Christina

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    • Posted

      you are not alone sometimes it feels that way but I do think it helps sharing people's experiences.. Also when your daughter feels tired tell her to rest my son can tell when an attack is coming on as he feels fatigued if you try and push through you feel worse... It's not nice as some times you feel like your left out but just priotise on those nights out and rest up for them as lack of sleep can also be a trigger good luck for the future x
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