What is Gilbert’s Syndrome?

You’re yellow, you feel sick, can’t think straight and are exhausted, whaexhausted with Gilbert's Syndromet is happening?

GS is named after a French Dr (Gastroenterologist), and it’s sometimes called ‘Unconjugated hyperbilirubinaemia’.
GS is thought by some scientists to be inherited and it is caused by a mutated gene*: uridine-diphosphate  - glucuronosyltransferase, which leaves those affected with less of the related enzyme (called UGT for short).  An enzyme is a chemical substance in your body that causes a chemical reaction to happen. Lack of this particular enzyme, UGT, is the key to what happens in our body and results in the symptoms we can experience:

Jaundice –
Red blood cells release ‘bilirubin’ into the bloodstream, which the liver should pick up and convert to bile, and then flush from the body. In GS, without the enzyme needed to do this properly, the bilirubin builds up and and can make you look yellow.  It’s also key in diagnosing GS, through blood tests which identify fluctuating levels of bilirubin in the blood. GS is also known by this symptom as Unconjugated hyperbilirubinaemia.

Toxic reactions –
Parts of the liver, called the ‘Phase II’ pathways, process certain toxins, for example: pollution; chemical fumes; and chemicals in some drugs.  This process, called glucuronidation, has been reported to be 31% slower in the typical person with GS.  Numerous studies have shown various drugs are processed less well by people with GS.

Many of the resulting symptoms of our liver’s reduced ability to do the cleaning it’s designed to – jaundice, nausea, fatigue, shakiness, bowel complaints, vomiting, ‘brain-fog’ or difficulty concentrating, are experienced in varying degrees by those with GS.

It seems that certain activities may make these symptoms worse, by placing further stress upon the liver.  Missing meals, lack of sleep, vigorous exercise, illness and stress can all bring on the symptoms.

Most important in keeping your liver functioning as well as possible is maintaining stable blood sugar levels.  This is because the enzyme we don’t have much of uses sugar to help get rid of the toxins it is supposed to deal with.  We can also fool the liver into making more of the enzyme by eating certain foods and diet plays an important part in managing GS.

At present there isn’t a clear link between all the processes involved, or even that GS is actually hereditary.  AGS hopes that, through funding research and creating a higher profile for GS, we can better understand and treat the symptoms of Gilbert’s Syndrome.
* GS is a ‘recessive’ disorder, meaning that you need to have two copies of the abnormal gene (one from each parent) to acquire it. People who inherit the same mutated gene from both their parents are termed ‘homozygote’. Even so, having two abnormal genes does not necessarily mean that you will go on to develop GS.

Although it is not understood why, some people with only a single abnormal gene (‘heterozygotes’) have higher than usual levels of unconjugated bilirubin but do not have GS.

In populations of Africa and the Indian subcontinent, the frequency is 10-25%, and in Southeast Asia and the Pacific Islands the frequency is 0-5%.




25 thoughts on “What is Gilbert’s Syndrome?

  1. Tony Davies

    You say that “diet plays an important part in managing GS” but I cannot find any further reference to diet on your web site.

    Which foods should I avoid and which foods should I be encouraged to consume ?

    Thanks

    Reply
    1. admin Post author

      Hi there, please do check back as the site progresses and more information is updated and added. Diet is a large section which will be covered.
      very best
      Adina

      Reply
  2. Hurdy

    I have a question with regards to having recently been told about having Gilberts Syndrome. It was discovered (by fluke) after I was struggling to balance thyroid medication in order to feel better. After having 2 daughters in 2 years I developed Hashimoto’s Disease. I am trying at this time to read up about as much as possible of anything that can affect me (for good and bad) and wondered if there are any links discovered. Also, will GS affect the way my meds work at all? I do think my brother has this too (GS I mean) as he had an operation a while ago and they thought he was given an overdose of pain medication as he turned all yellow (but perhaps it was not an overdose as such after all?!). Any comments would be much appreciated as I am faced with dealing things mostly alone as my GP and endocrinologist are far too relaxed about things for my liking.

    Reply
    1. admin Post author

      Hi there, you can find advice on good foods for people with Gilbert’s Syndrome in the diet category on this website. Hope that helps.

      Reply
  3. May McLaughlin

    Hi, it is so good to find a website which recognises the fact that people with GS can in fact feel extremely unwell. I was diagnosed many years ago during a particularly long spell of GS. Neither of my parents was ever diagnosed or had any suspicions that they may have GS.
    Last year, after several weeks of feeling unwell, my son aged 15 was diagnosed as having it too. Our main problem seems to be knowing how best to handle it so that the symptoms reduce quicker – a lot of trial and error has gone on. As described by others on the website, doctors either don’t know much about it or dismiss it as not much of a problem. They haven’t been able to give us very much useful information apart from referral to websites.

    Reply
    1. admin Post author

      Hi there May, you are exactly right – trial and error is how I have managed to control my symptoms, but even then life circumstances are not exactly within control all the time. That’s why I wanted to offer people the benefit of all the hard work I do to try and live ‘well’ so that those with symptoms are not alone and can find a short cut to trying what might work for them. If you’d like to send more information about what you find works for you and your son please do email help@gilbertssyndrome.org.uk. I am hoping to write a self-help book to compile the information for other people to access. thanks again, Adina

      Reply
    2. donna natale

      I was first told I had high bilirubin at age 13 but nothing more was said about it and I wasn’t aware it was a problem until much later in life even though I always seemed to have something wrong with me – sinus, headaches, aches and pains, constant nausea etc.
      When I was pregnant at age 31 I had a severe attack of vomiting and diarrheoa, I thought I was having a miscarriage. Stomach bug was diagnosed and I went on to have these attacks about once or twice a year for the next 10 yrs.
      A GP told me in my early forties that these attacks were oesophageal reflux and it was quite common for women of my age. He also told me I had GS but it didn’t mean anything and would cause me no problems. However as I entered my late 40′s and early 50′s (I’m 52) my period became irregular due to normal hormonal changes but the episodes and severity of the attacks have increased.

      I have also lost weight, have lots of aches and pains, vertigo, shakiness, nausea, the smell of perfumes makes me feel ill or gives me a massive headache and I can’t tolerate alcohol. After lots of different tests and hundreds of dollars spent having acupuncture, physio, massage and naturopathic consultations I don’t feel any better. My bilirubin level was 73 in 2008 when I had a particularly bad attack. I have had more episodes since but recently had to go to hospital in an ambulance as I was so ill. I am waiting to find out my bilirubin level (it’s normally about 40) but my GP still doesn’t think it has anything to do with the attacks!! or that it is causing any of my problems.
      Are these symptoms familiar to anyone else?

      Reply
      1. admin Post author

        Hi Donna, I’m sure these symptoms will be familiar to many, including myself! I take medication for acid stomach, and have had stomach problems for 20 years, I lost alot of weight after first getting Gilbert’s Syndrome symptoms, and often suffer nausea, vertigo, shakiness and chemical smells make me feel very unwell. Many of these symptoms could be put down to the liver struggling. When I am hungry I become jaundiced and very shaky. When I’m over tired I can get jaundice, abdominal pains and vertigo. Diet helps, as does regulation of excercise, stress and life in general! Plus getting lots of sleep helps (unfortunately I’m not very good at getting sleep). I don’t get attacks of vomiting and diarrheoa any more, possibly thanks to taking as many precautions as is reasonable, as mentioned, but also I took a series of high dose probiotics to try and get back the balance in my gut, which had clearly suffered from a number of years of diarrhoea. Very best of luck in trying to manage your symptoms. regards Adina

        Reply
        1. Alan Fortune

          Please have a look at this site – http://www.msgtruth.org/why.htm – and also here – http://unblindmymind.org/ . The last link is the site which led me to find out the information that’s answered nearly all the questions of what’s ailed me all my life. Biochemistry of food is still poorly understood by many Doctors. We are putting Chemicals into our food that are unfortunately, making us ill to varying degrees, Gilberts Syndrome will make this worse. Trying to avoid MSG is difficult but may transform your life.

          Reply
  4. Nigel

    This is an interesting site. I was diagnosed with ME/CFS years ago and also GS. The Dr’s always said that GS doesn’t cause any symptoms but after reading other people’s experiences with GS I sometimes wonder whether all my symptoms are down to GS.

    Reply
    1. admin Post author

      Hi, there is certainly speculation that the two could be one and the same, and that they certainly impact each other. I’ll be publishing a story about that in due course, from someone else who suffers both. Stay posted, best Adina

      Reply
    2. admin Post author

      PS, I came across this statistic, but don’t have a record of from where: Studies show that people with GS are four times more likely to have Chronic Fatigue Syndrome (CFS), and also that 75% of those with CFS have allergies. In fact, some suggest that CFS is the effect of chronic allergies.

      Reply
      1. lindsay

        Hi, I got diagnosed aged 24 after a lifetime of fatigue, tummy pains, aches. I have been seriously unwell for 4 years to the point of wanting to top myself but had to fight on for my kids. My gp suspected fibro,cfs after a million test they dx fibro. I never mentioned I had gilberts as I was told at the time it was harmless but would causf fatigue etc. When I say ive had 1 good day in 7 for the last 4 yrs im not lying. Symptoms. Hot and cold sweats flashes, aches, stiffness, migraines, poor eyesight, foggy head, head pressure, cognitive problems, adverse reactions to meds, hangovers for days, jumpiness,insomnia, bruised feeling of the skin, feeling fluey. After plenty of research into gs ive started milk thistle before a meal and tumeric afterwards and after a week ive seen a 50 % reduction in my symptoms especially the disabling fatigue that has left me in bed and dragging my self about. I hope. To improve furthes ive had 4 yrs of my life taken by gs im not convinced by fibro. Doctors need to stop passing this off as harmless I almost ended my life or would of had I have to liue another 30 yrs as ill as I was. Anyone who is suffering milk thistle and tumeric help I swear by it so far, im booking in with my gp to discuss my improvement and to tell her about my gilbert7 as itl be way bk in my record and I never mentioned it as was told it was harmless yeah right we cant shift toxins well with gs that is not harmless, I really think alot of cfs/fibro patients could be undiagnosed gilberts x

        Reply
        1. lindsay

          Im now 39 and got dx with gs when I was 24 , cant believe I failed to mention it to my gp as I change docs a few times. I had jaundice aged 6 too, gs needs more research and studys into the toxic effects we suffer x

          Reply
    3. Nigel

      Thanks for your research. Yeah I believe they are related in some measure, I don’t know if medical science will come up with something. They seem to be very slow on things like this.

      Reply
  5. Mario

    Dear,

    My nam is Mario, I have 36 years old and have diagnostic Gillbert syndron.
    I have one simple question, can this syndrom be a couse off ”fat liver” diagnostic with ultrasund. My ALT, AST, GGT, Cholesterol are normal, but ultrasound of my liver is very very ”fat liver”. I am not fat, i have 75 kg, and 175cm of high.

    Thanks to all.

    Reply
    1. admin Post author

      Hi there, actually usually Gilbert’s Syndrome would protect you against fatty liver as you wouldn’t do the things which cause it. Fatty liver is a different thing, and isn’t related to being fat. I’d suggest researching fatty liver more as a separate condition. Hope that helps

      Reply
  6. tanya

    I WAS JUST TOLD I HAVE GS AND BEFORE THAT I LOST 30 POUNDS BC OF LACK OF WANTING OR FEELING THE NEED TO EAT. I HAVE PAINS BUT THE BIGGEST THING WITH ME IS LACK OF ENERGY AND I FALL ASLEEP AT ANY POINT OF THE DAY. CAN BE ON THE COMPUTER AND JUST FALL A SLEEP.

    Reply
    1. admin Post author

      Tanya, I lost alot of weight too. I often feel sick and not like eating. Abdominal pains and IBS are also common in people with Gilbert’s Syndrome. I drag myself around from day to day in a tired haze, and getting enough sleep is absolutely vital. A good eight hours is really important for you. Look after your diet, there are lots of tips on this website, drink lots of water, get lots of sleep, and try milk thistle and other liver friendly herbs. Hopefully that will perk you up.

      Reply
  7. saoirse

    I was diagnosed with Gilberts aged 30 yrs when pregnant with my fourth child. Before then I had had episodes of jaundice and nausea, fatigue and aching which was put down to various things such as glandular fever. I was given a diagnosis of CFS aged 40, which was then found (after more detailed testing) to actually be a specific neurological disease, neuromyotonia (symptoms include cramps, fasciculations, sweating, intense fatigue, sharp muscle/nerve pains, etc). This was diagnosed at the same time that blood tests showed up macrocytosis (enlarged red blood cells) and low serum B12. The neurologists prescribed B12 intramuscular injections every second day for life to prevent further peripheral neuropathy. This helps with many of the symptoms of neuromyotonia, and also seems to have helped the Gilbert’s symptoms. I still get the symptoms when I have got too tired, stressed or if I m not eating enough. Dieting is difficult although I need to as I am overweight. It definitely helps to get enough sleep but medical problems of other members of the family mean that I often have only 4 or 5 hours of broken sleep, symptoms are much worse after nights like that.

    Reply
  8. Kirsty

    Well I agree with most things said here am 37 was told last year I had gs after plenty of trips to the doctors, feeling tired dizziness fell like going to pass out it’s the feeling u get when you getup to fast but a lost worse and could be sat down and feel it, alcohol well a couple and it’s a no go as gos straight to my head now, the doctors just seem not to be both no more now they have labeled me and say nothing they can do so it’s good to find this sight and read that am not the only one and it’s not in my head and must be because of gs as I have most of the things said, think it’s about time the doctors took gs seriously and not just dismiss you and make you feel yr wasting there time as sometimes u feel really unwell

    Reply
  9. Shawn

    Try calcium d-glucarate in small amounts say 250mg. Get your bilirubin levels checked after a month or so. If they haven’t gone down raise the amount. It made my levels normal after a lifetime of being high. And yes like all of you it has caused lots of havoc. Autoimmune disorder issues, sensitivities, exhaustion, but worse it keeps estrogen levels too high leading to fibroids, thickened uterus lining etc. the key I’m finding is optimize your liver. This kingpin is d glucarate but also indole3carbinole milk thistle turmeric. And of course a healthy diet with lots of water and not too much fat (fat can be good for you but I believe Gilbert’s makes it harder to process). Also cut back on simple carbs and processed food. Hang in there. This can be improved.

    Reply

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