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

    I eat raw vegan and it helps me a lot. I eat small meals throughout the day. More than a snack, less than a meal. I always have water with me, and I avoid all toxins such as alcohol or cigarettes. I even avoid chocolate and all other forms of caffeine. Personally I don't even crave any of these things as my body lets me know they are sickening to me. Good luck!
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  • Posted

    Oh and p.s. YES I'm having a laugh... I have symptoms too even though they are mild on my regimen, and I notice the symptoms right away if I go too long without eating or eat too much.
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  • Posted

    Thankyou I will try that! I struggle eating so badsad I constantly feel sick! even thinking about food makes me ill rolleyes
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  • Posted

    Hello Caketin

    I have been a Gilberts syndrome sufferer for many years and have managed to live a pretty full life, but yes, you are right, GPs do not fully understand it and some admit to poor training. Its certainly not life threatening but can be very debilitating. Here are my top tips for coping with the tiredness, sickness and at times, what I call the occasional 'crashes' when I have to lie low for a few days and rest up.

    Eat healthy and often - avoid big meals/fatty foods etc.. - lots of veg/juices..low chloresterol diet - drink lots of water - little alcohol seems ok, but obviously go easy ( for me 1 glass wine in evening/or pint of beer is ok) - stop smoking if poss ( just done so...again and will stick this time!) - try to rest each day/I take a short nap early afternoon, as this re-charges the battery. This may not be practical but it helps me to manage evenings better - keep fit & healthy, but dont over do things (I bike and walk most days, and go boating too) - avoid too much stress in your life...quite a big factor this, as it runs your immune system down, and when thats low, one is more prone to GS. Perhaps try yoga or meditation too. Milk Thistle some swear by, as healthy reputable herbal.

    And above, all enjoy life and keep the balance! Make sure your family and partner (if relevant) know the picture. And understand that at times you wont have the energy to do stuff and feel quite wobbly.

    There are one or two websites out there. the best I have come across is gilbertssyndrome.org.uk

    Take good care and all best to you. :D

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    • Posted

      My girlfriend has tried for years to get someone to figure out what is wrong with her. Every point that has been mentioned fits, even a doctor telling her that it's some genetic mutation, but not saying Gilbert syndrome. Anyway, I do most of the cooking for us and I was wondering if there was a place to get recipes that would be needed to cook for her in a way that is helpful. I'm guessing I'm asking is there a certain type of diet I should be preparing? And is there a doctor that specializes in this or what type of doctor is it? Thanks for your help in advance

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    • Posted

      Hi I'm sorry to hear about your girlfriends issues there is a Facebook page dedicated to people with GS. It is called Life with Gilberts Syndrome they always talk about foods that help them etc. U may wish to ask them what they eat to help their symptoms. I hope this helps.

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  • Posted

    My husband was diagnosed many years ago with Gilberts syndrome and displayed the same symptons, but in his case extreme fatigue and perspiration on exertion. He was told that it is stress related and that certainly is how it manifests ifself. If he's really stressed the symptons return. I know its hard to avoid in this day and age, but may be give it a try and see if it works for you. One other thing he gets (sound gross) his urine gets very dark and his stools become very pail. If this is the case for you it might

    explain the sickness, because the liver is unsettled; this is usually his first sign for him. Have you tried relaxation cd's?

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  • Posted

    I have posted information in the past about amlodipine on this website. I had an episode last year and thought it was connected to the blood pressure medication. Maybe 5 monthns ago I was told that I have Gilbert's Syndrome. I have most of the same symptoms as most people. One thing I've noticed about myself is if I exercise and get my body weight too low that the symtoms really increase. I am on a personal mission to find out what type of doctor studies this specific illness. I would think it would be a Hepatologist, which is a liver specialist. I am tired of being told it is nothing. I'm 50 years old and currently attend college. Some days I am so outside of myself and can't focus on anything. The only thing I've ever really heard about diet is to go on a gluten-free diet. Try the website Gilbertssyndrome.com, the sufferers have to get together and create a community to figure this out, Good Luck. 
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  • Posted

    Hi Caketin96

    Can i firstly say a big thank you for your post.

    My 16yr old son was told he has Gilberts syndrome on the 9th if April (this year 2015) and we were at the doctors earlier today after feeling fobbed off at the time of being told only for the doctor to say 'its Symptomless' wtf!

    Like your self he feels sick, tired, dizzy, has brain fog, yellowing of his eyes, some times has no appetite, has stomach cramps and trouble sleeping. He has had alot of absences from school due to being extremely tired and sickie and just feeling unwell. This all affects his day to day life.

    Going to the doctors was a waste of time and my son now feels like he's getting made out to be a liar. The doctor really doesn't care and said it was all stress related.

    Im at such a loss and heartbroken to see my son upset.

    I see your post was posted over a year ago, can I ask how you are doing know? Have you improved at all? Feeling and eating better? Have you had any more help from doctors? I really hope you are doing loads better .xxxx

    I showed my son your post and honestly it lifted him to read there are people going through the same and being told the same. Thank you

    Stacey .xxx

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    • Posted

      Hi Hairdo,

      Eating water-rich foods helps me most: Fresh fruit, fresh leafy greens are the best. Green smoothies blended from just those (and water)- such as apple, kale, banana. Half a watermelon for breakfast (two days in a row.) Sprouting nuts and seeds for additional protein (only eat small amounts). Small frequent meals and resting often throughout the day, but also exercising regularly. I'm 100% raw vegan and I don't own a car, I bike everywhere. This regimen gives me more energy than many with Gilberts, I think, but I still have some brain fog and get tired easily and have slightly elevated bilirubin, enough to know that I do indeed have Gilbert's and not some other condition. Good luck to your son!

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    • Posted

      Please have your son also checked for Wilson's. They were thinking my son has Gilberts but luckily I had a gastro doc that checked his ceruloplas level and now their thinking Wilson's which sounds like a lot of the symptoms everyone on here is talking about. I have to wonder how many people are misdiagnosed.

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  • Posted

    Dear Caketin96 ,

    I am 18 years old and I have been diagnosed with Gilbert's Syndrome just 2 days ago. Before that i was in and out of the hosiptal in the past 2 years. I suffer with brain fog , poor memory , anxiety heart palpitations and alot more. I feel weak almost everyday.. I am a muslim and this month is something we call ramadhan.. it means we have to fast ( not eat )until the sunsets. And honestly i don't know if i fasting is good for me or not , my doctor has not given me so much infromatin about the syndrome. Although he told me i should stay out in the sun at least 15 minutes a day and once i feel abdominal pain i should have a little but of sugar. He also told me to not stop eating because it will make it worse. All i know about this syndrome is that it is a mild liver condition and that it has no treatment. I don't know what diet i should start so tht i don't trigger anything. Can you help ? 

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  • Posted

    Dear samah84076: Fasting has never felt good to me. I tried for just 24 hours and felt quite ill. It is not recommended for anyone with Gilbert's due to our liver problem. However, you could try a modified fast, by cutting out all meat and dairy-- all animal products-- from your diet during that time. Focus on raw fresh fruits and vegetables, and see how you feel! It helps me greatly. best wishes, Gill Bird.
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    • Posted

      Dear Gill Bird ,

      Thank you .. I'll try that. 

      Although i also suffer from very low vitamin D and my doctor has asked me to have more milk and fish , will that be okay ?

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