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Welcome to the Action on Gilbert’s Syndrome website. We’re here to bring you the latest up to date info on Gilbert’s Syndrome in an easy to access site. If you want updates on our progress just go sign up on the right! =>

You can also follow us on twitter for alerts on the latest posts and news at @GilbertsSyndrom

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Action on Gilbert’s Syndrome has been in existence since 2003. Since then I’ve collated information from other websites, published medical research, and anecdotal information from people who get in touch to tell their story. One of the biggest gaps in knowledge seems to be directly due to the lack of evidence from people with Gilbert’s Syndrome themselves. I hope that more studies of groups of people with this genetic condition will be done in the future. I’ll keep you posted!

One in 20 people may have Gilbert’s Syndrome (or possibly more), but only one in three of those will be aware of it, and less than one in three will have any symptoms at all. Most people who have it are men. Sometimes called Gilbert’s Disease, it is not in fact a disease.

Most Doctors use standard reference information that tells them to tell you that Gilbert’s Syndrome is harmless. However, information from scientific studies illustrates that you may experience a number of symptoms, including the most common one of jaundice, and that you need to be aware of certain chemicals, including prescription medication, that you are less able to cope with.

This website offers those with Gilbert’s Syndrome, and their family and friends, as well as the medical profession, further information from published scientific research and shared information from hundreds and thousands of individuals who have Gilbert’s Syndrome.

I hope it helps us all live better with Gilbert’s Syndrome.
Adina




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38 thoughts on “Home

  1. Rosemary Carter

    It is so refreshing to read information on a website which mirrors what I have experienced since being diagnosed with GS following the long hot summer of 1976. I read the NHS website which is absolutely useless and helps me understand my GP’s attitude to the condition. When I next go to see my GP because I feel dreadful for no apparent reason, I shall go armed with the information gleaned from Action on Gilbert’s Syndrome as many of the symptoms I was suffering from recently were on your symptoms list, which my doctor diagnosed as a virus. It was only through my suggestion that, when she said she wanted me to have a blood test, she added a test for liver function. I had pointed out to her that I had been going through a great deal of stress recently and knew that that can upset the liver. Unfortunately I had not been on your website prior to my appointment, but it is patently obvious she knows nothing about GS. I appreciate that there is no treatment for the GS, but I shall now be careful about what I am prescribed for the symptoms. Thank you for this.

    Reply
  2. Premenopausal Symptoms

    I like the helpful information you provide on your articles. I?ll bookmark your weblog and check again right here frequently. I’m reasonably sure I?ll be told many new stuff proper here! Best of luck for the following!

    Reply
    1. admin Post author

      Hi there, thanks for the comment, as you can read on the site hormones can trigger Gilbert’s Syndrome symptoms, the menopause in women being a key lifestage trigger.

      Reply
  3. Clarence Hall

    I would appreciate any info and help regarding GS and nausea. Is there a connection
    between GS and the action of the gallbladder? I wake up in the morning really nauseated and it occurs within a range of one hour. I’ve tried sitting up and sleeping what I can and the nausea stays away. I’ve had no pain from the gallbladder and nothing I eat make me sick like the usual problem gallblladder causes. After I eat the
    the nausea goes away or at least decreases in a couple of hours. I’ve had tests of my liver, pancreas, upper GI, a colonoscopy and found nothing wrong. I do have small gall stones though. Any help including medication to try would be appreciated.

    Reply
    1. admin Post author

      Hi re. the gall bladder, here’s a useful insight from some research: 25% of those with gallstones had Gilbert’s Syndrome, while only 3% of those without did. 15% of the stones were bilirubin stones, and most of the cholesterol stones had a bilirubin center, meaning that it acted as a trigger for gallstone initiation. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=6253364&query_hl=7&itool=pubmed_DocSum
      interesting! There are medications for nausea, do ask your Dr. best Adina

      Reply
  4. Lauren

    I’m so happy to read this website, Im 24 and for the last 7 years been very poorly. I’ve been in and out of hospital different tests for whyi feel so bad. I had bugs in my tummy which created ulcers. So I am very underweight I weigh six and a half stone. I found out I had Gilbert one afternoon when I turned yellow and looked like a Simpson. Some weeks I get gilbert and I feel so poorly that I can’t go out I’ve learnt to not make plans anymore. My symptoms include, dry mouth, pains in my tummy, fatigue, ibs, dizziness, dots in my eyes, anxity, hot sweats and just feeling crap. I want to rule my body not my body rule me. I just want my life back and this website doesn’t make me feel as lonely as I am with it. So a big thank you!

    Reply
    1. admin Post author

      Hi Lauren. It’s hard to accept that you and your body have to work together, when your body isn’t doing what you want. Just be good to yourself. Your stomach problems have obviously made it more difficult too. You can feel better, and come to terms with your condition, but you will have to listen to your body carefully. Try some of the diet and other tips on the website, and let us know how you get on. Very best, Adina

      Reply
  5. Richard.F

    I was diagnosed with GS a few years ago, around the time that I was also diagnosed with H Pylori. It has been a roller coaster ride for me since, with numerous trips to the doctors, who seem to treat my like I am an idiot who imagines the symptoms. I have had every test apart from an MRI, and they have all been negative.

    My symptoms are fatigue, abdominal pain, back pain, nausea, headaches, feeling dis-orientated, eyesight blurry and double vision. Even typing, reading a writing I find hard to do any more. I am still managing to run a company with a dozen employees, but find this very hard, and I am sure that the stress from this is amplifying the effects of GS. On top of this the repeated symptoms keep making me feel that there must be something more serious wrong with me. At times I really feel like my days are numbered. But then I get a few weeks where the symptoms clear up and I almost feel normal again.

    I eat a healthy diet, and find this definitely helps, because if I err, then I feel more sick. If I try to exercise it usually makes me feel worse

    Reply
    1. admin Post author

      Hi Richard, thanks for your story. I too have a demanding job as a charity Director, and I know that if I worked less I’d have fewer symptoms. It’s up to you how much you want to put into different areas of your life, as the more effort you put in the more symptoms you’ll get. You can help yourself by getting really good rest, and really switching off when you aren’t working. Meditation and massage can help relaxation too. Perhaps try some of the de tox herbs like milk thistle, or some of the adaptogens such as ginseng. You also have to listen to your body more carefully when you have Gilbert’s Syndrome. I too find exercise really difficult these days, although I try walk a few miles a day to stay active, but not stress my liver with really vigorous exercise. Good luck. And always always explore symptoms that are really affecting you – it isn’t necessarily Gilbert’s Syndrome.

      Reply
  6. Murrie

    Some websites say that GS is harmless with virtually no symptoms, while others say that it causes severe cramps and fatigue along with jaundice. I’m confused! Does it vary from person to person?

    Also- I’m constantly tired but I go to bed around 9 every night (If I try to stay up later I end up falling asleep in the next 30 minutes) and wake up at 6ish for school (I’m still in highschool). Does this have to do with GS?

    Reply
    1. admin Post author

      Hi Murrie, yes Gilbert’s Syndrome does vary from person to person. It also affects people from different racial backgrounds in different ways too. There are basically slightly different genetic versions of Gilbert’s Syndrome. Lots of Doctors don’t know this, and so they only tell you the very basic stuff they learnt at college in a five minute session. Hopefully the information on this website will help you.

      Reply
  7. Malcolm

    having been a GS sufferer for many years, more recently and because of the Jaundice it has been suggested I try a sunlamp at home to help alleviate this. Any comments would be most welcome

    Reply
    1. admin Post author

      Malcolm, yes, sunlamps can alleviate the jaundice, but it doesn’t stop you suffering from Gilbert’s Syndrome, or the fact that your liver can process fewer toxins than other people! The jaundice is just a symptom of that.

      Reply
      1. Malcolm

        Thanks for your reply this is more or less how I sussed out the use of the sunlamps, However it’s reasuring just the same I like this forum first useful one I’ve seen. Keep up the good work

        Reply
    1. admin Post author

      Hi Aaron, it’s an absolutely classic symptom to feel tired. I don’t drink at all as it makes me feel ill. We’re all a bit different so you may or may not be able to drink much.

      Reply
  8. Mindy

    Hi, stumbled across this website after starting to look up GS again. I was diagnosed about 8 years ago and the ‘whites’ of my eyes are only ever white when I’ve been on holiday for more than a week. Unable to become a lady of leisure I’ve been trying to find out if there are any make up tricks to stop me looking like I need to be in bed as a patient, not looking after one! (I’m a nurse). It’s embarrasing! Concerned colleagues ask me all the time if I’m okay because I look so ill.
    Does anyone know of any tricks to play down my yellow eyes??? I’m very conscious of my jaundice, I count my blessings that it’s not a serious liver condition but it really is starting to get me down. I eat well with the odd treat, not overweight, hardly ever drink alcohol, have tried milk thistle but this didn’t work for me, I’ve not got a current infection/ under any extraordinary strain that would put my liver under excessive stress. My job is reasonably stressful I guess ( Intensive Care Sister) but it doesnt seem stressful to me for the most part and I love it. Night shifts obviously don’t agree with my jaundice and I do get incredibly fatigued (but I guess so does everyone else who works through the night!!), but I always put this extra fatigue down to the fact I can rarely sleep during the day.
    I have tried academic sites, spoken to colleagues, including liver specialists but I can’t seem to get rid of my nasty, yellow eyes! :(
    If there is anyone who has a trick up their sleeve – or in their make up bag! – I will be truly grateful.

    Reply
  9. Angela

    I have a 4 year old that has been confirmed with gilberts syndrome via a DNA blood test. He has been suffering with high billirubin levels (between 30 and 50), stomach cramps mainly high up in the lower rib area, leg pains and low energy.

    I am not sure if it is common for diagnosis at such a young age. Also as he is only four I don’t think some doctors theory that the symptoms other than jaundice are due to the anxiety of knowing that you have gilberts is possible. He has had the non jaundice symptoms for a long time before this diagnosis. And more importantly he has no idea that he has gilberts syndome.

    Reply
  10. Kayleigh

    Hi

    I have been told today I have gilbert syndrom. I am 27 and this explains the fatigue I have always felt and my intolerance to alcohol. I was wandering if headaches were a symptom. I have suffered from chronic headaches for the past 10.

    Reply
  11. Luís Silva

    Hello,
    my name is Luis and i’ve been diagnosed with GS a few years ago.
    apart from having in common most of the symptoms described above what troubles me the most is my eyesight. I’ve always struggled with acomodation problems but for the last 2 years i seam to have lots of “floaters” in both eyes and an increasing difficulty in reading. My ophthalmologist says there is nothing wrong with my lenses and that i have 100% in both eyes however it troubles me in and out, not constantly.
    I´ve never found any comment on eyesight and GS. has anyone heard anything? is there anything i can do to alliviate my symptoms.
    I have a lot of careful with y diet and exercise (though this one tends to aggravate things)

    Tks,

    Luís Silva

    Reply
  12. Derek

    Hi,
    After exploring whether my tiredness was due to Type II diabetes, my doctor has told me I have GS. That would explain the long period where I was taking nasty stuff for IBS which has thankfully resolved, the itchy skin, the tiredness and what I call the ‘brain paralysis’. What I haven’t noticed is any kind of jaundice….does GS present without jaundice.
    Derek

    Reply
  13. Liz B

    I seem to have a shockingly bad immune system and come down with most illnesses going around. Is that a symptom of my Gilbert’s Syndrome? Or is it just an unfortunate coincidence?
    Thanks

    Reply
  14. Ann Wardle

    A relative has had a very bad time for the last four years and I am researching CFS/ME. It strikes me that some of the people commenting on your site have very similar symptoms. What do you think of the idea that they are linked, or even the same thing?

    Reply
    1. admin Post author

      A link has often been suggested – but as there is very little research into either, there’s currently a lack of evidence so far (apart from anecdotal) I am afraid. Part of the importance of this site is that this sort of comment can help others in considering such issues. Thank you!

      Reply
  15. Charlie staples

    I was diagnosed with GS after my doctor thought I’d contracted hepatitis! I was very scared as you can imagine but then I was told it was GS. My symptoms are extreme tiredness and phantom pain. I call it phantom pain as I cannot explain where my pain is just that my body hurts. My eyes go very yellow and I itch a lot which keeps me awake at night. Great website I no longer feel on my own

    Reply
  16. Lucy

    Thank you so much for creating this site! I was diagnosed with Gilbert’s recently, after a 2 week stay in hospital for something else. Looking back over the last year or so, I recognise a lot of the symptoms people on here have experienced, but it’s incredibly frustrating when the NHS list it as a “harmless” condition with limited symptoms. Just because there isn’t a cure for it doesn’t mean GPs and other medical staff shouldn’t treat it as a problem.
    I really appreciate all the advice on here, and to know it’s not all in my head! Thanks again.

    Reply
  17. Rhonda

    Hi,
    My son was diagnosed with this when he was 15, we went to the doctors with various symptoms but the one we was most concerned about was he was having hallucinations and his eyes were going yellow.
    After having blood tests he was given the diagnoses of GS and told that the hallucinations were a sympom when his levels were high.
    Does this sound right? Has anyone else had this sympom?

    Reply
    1. admin Post author

      I don’t know if anyone else has had hallucinations. I haven’t, and I’ve not heard of it thus far.I am sorry to hear of it, it must be distressing.

      Reply
      1. Rhonda

        Thank you, yes it is extremely distressing for him. It has been 3 years now since his diognoses and although he is doing well keeping a lot of the stomach/tiredness issues to a minimum, the hallucinations still bother him. Looks like another trip to the doctors is needed. Great website btw. It’s very informative. The doctors told us nothing about GS when he was diognosed, we had to do our own research.

        Reply
  18. Adam Gompertz

    Hi, have known about my GS for around 18 years, told it was harmless. But I do get tired, my eyes take on a yellow pigment, I do get abdominal pain, and have just been in hospital with abdo pain, back pain, and pain in the groin, with no discernible cause. I do feel sapped of energy with fatigue. I am wondering whether my GS is affecting me more than I realise.

    Reply
  19. bella

    I was officially diagnosed last year after years and years of suffering… doctors thought I had ME then maybe lupus … but all my symptoms.. we’re Down to my GS looking back it all makes sense now.. all 3 of my children have been badly jaundice after birth. as have I. The tiredness is awful.. and the stomach and or back pain… nausea.. I swear my loved ones think I’m making it up sometimes… PMT is evil.. I don’t drink because it not worth feeling ill or coping with that head to toe insane itchiness.. I also avoid paracetamol.. and can’t stomach artifical sweetness they make me so poorly… the brain fog is another major one… and losing concentration. The dizziness… muscle and joint aching. I’m only 27 :( and it makes me miserable. I’ve suffered with depression and anxiety since my teens. I’m an intelligent individual so the cognitive disfunction is just frustrating. – I worry for my 3 children as it genetic… my eldest is tiny.. but don’t want to subject him to test.. – do you have a research on how/why GS causes stomach pain…?!? thank you in advance x

    Reply
    1. admin Post author

      The range of symptoms aligned to Gilbert’s Syndrome often include stomach pains. I am not a medical professional, and so cannot provide any advice in this respect. I am sorry that I can’t help people more, but all I can do is share stories, and the information I come across. Do keep reading the information here and stories from others, which I hope can help or inspire.

      Reply
  20. ann

    im trying to compile a list of food additives that contain caffeine so i can avoid them. i find brightly coloured sweets that we let our kids eat make me itch like crazy so this for my own knowledge so i can live better with gs and maybe help others too.

    all i can get on the internet is coffee tea etc

    Reply
  21. louise Cox

    hi I have IBS, systemic candidiasis and GS which is the recent addition. While I was pregnant I was healthy and had more energy and no symptoms of any 3 disorders, this has slowly deteriorated back to being extremely fatigued and sometimes a bit confused. My little boy is now 3. I wondered if the hormones of pregnancy had anything to do with this and thought it might help with your research.

    thank you for this site as doctors I have seen although they have diagnosed me are of little help. what is more frustrating is I was told if I had chronic fatigue syndrome I could attend a clinic to help me deal with the symptoms but as I have GS with the same symptoms there is nothing!

    Reply
  22. Eileen Robinson

    I have just been diagnosed with Gilbert’s syndrome and my GP has told me there are no symptoms regarding this disorder?

    Is this the case, as I suffer from tiredness; weakness and fatigue; right side abdominal pains just under the rib cage; periodic mild nausea; dizziness; difficulty in concentrating or focussing on tasks at hand etc. I was hoping this diagnosed problem would shed a light on my many of my symptoms, explaining why?

    Is it correct that there are no symptoms as he states please?

    Reply
    1. admin Post author

      Hi Eileen, if you read this website you’ll see the symptoms that some of us experience – start with the page ‘what is gilbert’s syndrome’. GPs aren’t taught that Gilbert’s Syndrome has different genetic presentations, and so some people experience no symptoms, but unfortunately some of us experience them all too vividly! Good luck with it.

      Reply

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