Son age 20 elite cyclist with GS

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hi all

I am new to this forum. My son who is 20 and is an accomplished road cyclist has just been diagnosed with GS. He has always had yellow eyes for last 5 years with no real problems until 6 weeks ago. 6 weeks ago his biri count was 27 then 3 weeks ago 54. His Symptons are extreme fatigue, floaty dizzy feeling and anxiety that has caused a few panic attacks. Tomorrow he is having some gene testing etc.  Looking back to before this he was working 2 jobs and training hard. he has also been vegan for 12 months. As you can imagine his life has just come to a big stop.  He has been to a naturopath this week and she is more understanding and informative than his doctor.  I have read lots of wonderful posts here and getting lots of ideas etc. Just wondering if any of you are athelets and how you have managed to train and compete with GS?  

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  • Posted

    I suspect that there is something else going on here with a yet unknown diagnosis.

    Bilirubin at 54 is not that high, I have been well over 100.

    I also cycle and hike in the mountains and am fit for my age

    I discovered that diet was the problem and that my bilirubin level would come down if I stopped eating spicy foods.

    It does take some time to find out which food causes the high bilirubin and I had to try various foods for a month to be sure.  It could perhaps be something in his vegan diet.??

    More diagnosis and tests would seem to be needed and the NHS will allow you to go for a second opinion, so don't just take the comments from a single doctor, they are human and can make mistakes.

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  • Posted

    I was diagnosed with Gs about 12 Yrs before on blood test with the same symptoms your son is facing.actually about 16 Years ago i suffered from a viral hepatitis and till then my uncongugated bilirubin scale was slightly at higher regime.The gastroenterologist i met told me not to be concerned about it as it is genetic however could not satisfy me about my problems i was facing till then which i never suffered during early stage of my life.however recently on blood test my vitamin b12 and D3 count came low which may be respobsible for fatigue and dizziness.many of the Gs patients suffer similar vit deficiency.i am now taking vitamin suppliments and feeling much better.As i was a vegeterian my gastro specialist adviced me to take non veg diet for abosorptivity of vit b12 as found rich in non veg diet.So far my personal study about Gs is concerned definitely vit b12 and thyroid profile for some patients having some definite corelation with people having Gs.As for people having Gs stage 2 Liver detoxification is slow so they are advised to take small meals in 2-3 hrs. time instead of large meal to avoid overstressing liver for slow detoxification(conjugation),drink profuse amount of water as it is good liver cleansing agent.Eat 2 Pomygranate as it will keep the symptoms away.definitely check your B12,D3 and thyroid profile as some Gs people reports deviation. Can continue less oily and less spicy non veg diet rich in Vit B12 as i started it although being a vegeterian for low number.waiting for your reply.your son is not the only one with Gs.I amalso having it from the age of 23 Yrs.now i am 38 and living with it .
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    • Posted

      Thankyou very much for your help. My son is going for alot of blood work tomorrow and I noticed there is b12 , vitamin d and thyroid..studies. Lots to take in. Thanks again
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  • Posted

    Hi, I was diagnosed with GS last year and have since found out  that over 'physical exertion' can trigger jaundice (yellow eyes). The main thing seems to be not to over do it on excercise and that stress can also be trigger along with lack of sleep & food. 

    Eating smaller meals more often seems to be good advice. Fresh fruit & veg good.

    The British Liver Trust website has some good info on GS. see link below

    http://www.britishlivertrust.org.uk/liver-information/liver-conditions/gilberts-syndrome/#Looking%20after%20yourself

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  • Posted

    Thankyou to you all for responding. There is alot of great points here. The big symptoms at present is the dizzyness and anxiety. He has a good morning then comes crashing down in afternoon. He now releases there is no quick fix here. Regarding the b12 he takes supplements but will definately have to look also at d3. I do appreciated all of your comments as this has been a horowing month.
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  • Posted

    From the time I was diagnosed w. GS, I have been often Vit D, and Vit B12 defficient. Once those defs. were corrected I felt somewhat better. Perhaps your son as a result of his vegan diet has B12 defficiency.
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  • Posted

    Sorry I haven't been on of late. My son couldn't have gs gene test as it has to come from a specialist. The big symptoms are at present are disequilibrium out of the blue which then can cause panic attacks. Mornings seem to be better than afternoons. He is now having fish and eggs with his vegan diet. Energy levels come and go. Very limited exercise if any. This has been a huge impact on his life as a cyclist and massage therapist. He gets very emotional with the complete change in his life. He has been for counselling to gain skills for relaxing when the anxiety comes. His b12 was normal also. Just need to get rid of the disequilibrium feeling.
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  • Posted

    Nicola, sorry to hear about your son not feeling better. I have the same symptoms, major diziness, and wobliness. Sometimes I almost fall down because I lose my balance out of the blue. Energy in the morning, and by mid afternoon I am totally depleted. Before GS I used to be a top notch athlete, and had unlimited energy. Now sometimes cannot work out for months. I am just starting an experiment taking a variety of supplements, will let you know if it works out. Since your son's symptoms are similar to mine, perhaps the same thing will work for him.

     

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