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! =>
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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
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.
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!
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.
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.
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
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!
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
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
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.
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?
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.
Oh, sorry, and yes, the tiredness is usually due to Gilbert’s Syndrome!
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
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.
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
Anybody feel tired often with gs ?? And should i drink much alcohol ??
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.