Gilberts Syndrome No Symptoms, you having a laugh?

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Hiya Guys, I was diagnosed with Gilberts Syndrome a while back and told I would have no issues with it, wrong! I always feel sick, tired, can't concentrate very well (which doesn't help in school), I get brain fog very easily. All this affects my daily life, especially in school! Doctors just dont seem to care! By the looks of things Im not the only one that feels this way. I have problems with my eating, anyone got any advice on that?

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  • Posted

    Hello Caketin, and Group.

    I have been diagnised w. CFS, acute brain fog, etc. 9 years ago. Constantly have low Vit. D levels, fatigue, hair loss, insomnia, etc. No one diagnised me with any other health condition, other then GS.

    I have been diagnosed 5 years ago w. Gilberts Syndrome. Not sure how long I had it, that's the first time I heard of it.

    The doc is telling me that the GS is a completely harmless condition but I beg to differ. My symptoms are improving sometimes, then they get worse. What I realized that when my condition is better, my bilirubin level normalizes, and when my condition gets worse, my bilirubin goes above normal. Seems like my level of bilirubin goes paralel with my level of well being.

    Woudl love to hear from you guys.

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  • Posted

    hello guyz. i am 36 years old and was diagnosed with gilbert syndrome when i was 27. before that i didn't know what I had and got admitted several times to the hospital with gastro on my discharge card. i have all the conditions mentioned above. its like a roller coaster ride up and down. anyways i am not here to tell you about my downs. i want to help people with my experience.

    1) We shouldnot exert ourselves. mentally or physically or take any stress.

    2) avoid carbohydrates try eating more protiens chicken breast etc. this depends frm person to person but i feel energetic with protiens

    3) there are times my energy is so low.. so just rest and relax and be low. because the liver will detox itself automatically when you rest yourself.

    4) very very important keep eating every 3 hours. if u feel hungry or no. avoid fried,oily and spicy. this also depends if you can eat these things eat but for me i get severacid reflux so i usually eat bland.

    5) there are different types of days morning low evening also low so chill you arenot alone. normal people also feel low. there is one time when we feel good i usually feell good in the evening that doesn't mean i over use my energy coz morning again i am so low. so control yourself when you are high on energy.

    we have a life with variations. 1 day good 1 day bad. the days may be more or less. but thank god. our reward is with him. i heard a person needs energy for sins and we all have so limited energy that doesn't suffice our day to day work. anyways take care and also i was recently tested with low vitamin d. if you guys also try to bring up your deficiencies.

    my doctor tells gilbert is nothing little elevated bilirubin thats it for him but not for us. now i wrote so much. there are times when i will not have energy to read all this also hahaha.. remember guys my doctor says only little elevated bilirubin he says concentrate on your vit. d deficiency hehehehe... guys if u low lay low... when u high still lay low only... all the best try to follow these things i pray to god you will feel better..

    some patients doc. has adviced to eat sugar and go i. sun for 15 min. ... i cant eat sugar cause the next day i feel more low so it depends from person to person... anyways god bless and relax

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  • Posted

    I was diagnosed with GS four years ago, at age 15. I will definitely attest to the fact that it is not asymptomatic. I am constantly fatigued, so much so that it affects my schoolwork and athletic participation. I also have a very poor immune system, and it takes me weeks to recover from colds and other illnesses. I also experience poor concentration, weakness, and nausea. I do occasionally experience mild jaundice, especially when dehydrated. 
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  • Posted

    I seem to have the same list of symptoms. I found that although supplements to help the liver and gallbladder function better help, diet plays a huge part in my day to day condition. I am addicted to sugar, and I find that days when I manage not to have any are much better then days when I have some type of dessert. The stomach discomfort and nausea come on the same day I eat the sugary treats,  the lethargy and mental fatigue follow the next day. Foods that are not organic, and or have some chemicals and additives, for example store bought mayonaise, also have a negative effect on my well being. I am trying to cut out all chemicals, non-organic food, and sugar from my diet, and hope for the best. I am also sensitive to some supplements like Milk Thistle, and MSM, so I am limited there also. Hope this helps Caketin96.
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  • Posted

    Gilbert's syndrome is a good thing. It is positively correlated to longevity, good cardio vascular health, and even resitance to certain forms of cancer.

    Try searching Gilbert's Syndrome and Longevity

    Try searching Gilbert's Syndrome and Heart Disease

    Very encouraging discoveries have been made ove the last eight years or so.

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  • Posted

    Hi Guys, I was diagnosed about 10 years ago, since then it has been a rollercoaster of symptoms.

    My Most recent was obviously feeling completely exhausted, foginess and slurred speech, i have stopped drinking alcohol about 6 months ago, yet sometimes i give off a smell of it, something to do with my blood glucose.

    I have bought milk thistle but i need assistance with a proper diet for Gilberts, am i losing my mind or does anyone else have severe crashes now and then?

    #dyinghere

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  • Posted

    Hi Guys, I was diagnosed about 10 years ago, since then it has been a rollercoaster of symptoms.

    My Most recent was obviously feeling completely exhausted, foginess and slurred speech, i have stopped drinking alcohol about 6 months ago, yet sometimes i give off a smell of it, something to do with my blood glucose.

    I have bought milk thistle but i need assistance with a proper diet for Gilberts, am i losing my mind or does anyone else have severe crashes now and then?

    #dyinghere

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    • Posted

      Hi Brendan and All, 

      Please click on my username to read my other posts if you are interested in diet info per my experience. Yes, I have exhaustion and foginess on certain days and this correlates with my food intake the day prior. I rarely allow myself alcohol. And never have more than a single drink, with food. 

      There are times that I do have to allow myself a bit of sugar, preferably natural source sugar, if I'm really uncomfortable. 

      A lot of this is a trial and error process and I suspect no two people with GS or otherwise are exactly the same in terms of sensitivities and reactions. Still, there likely is some common ground and I hope my food/ diet info is of help. 

       

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  • Posted

    I am now 66, but from being about 9 I often had sickly feelings, and jaundice. It was not until 2010 when the GP realised there was consistant high bilirubin in the blood It was diagnosed as Gilberts syndrome. They say it does not affect you, but it does in all the ways described by  many on this blog. some days can be pretty bad.

    Now I realise why I often felt so off and constant tiredness in my youth but did manage a career in nursing for many years. as you get older it can be debilitating.

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