Gilbert's syndrome 

Introduction 

Gilbert's syndrome is a harmless condition that can cause occasional episodes of jaundice 

Gilbert’s syndrome is a common and harmless condition, where high levels of a substance called bilirubin build up in the blood.

Bilirubin is a yellow pigment found naturally in the blood, which forms when red blood cells are broken down.

Symptoms of Gilbert's syndrome

Most people with Gilbert's syndrome will experience occasional and short-lived episodes of jaundice. This is when the skin and whites of the eyes turn slightly yellow.

Some people also report other problems during episodes of jaundice, including:

However, these problems are not thought to be directly related to increased bilirubin levels, and could mean you have another condition other than Gilbert’s syndrome.

Around one in three people with Gilbert’s syndrome experience no noticeable symptoms, and you may not realise you have it until tests for an unrelated condition are carried out.

When to see your GP

Although Gilbert's syndrome is harmless, jaundice can sometimes be a symptom of a more serious liver problem.

Therefore, you should seek immediate medical advice from your GP if you experience an episode of jaundice for the first time. If this is not possible, contact NHS 111 or your local out-of-hours service for advice.

If you have been diagnosed with Gilbert’s syndrome, you don't usually need to seek any medical advice during an episode of jaundice, unless you have any additional or unusual symptoms.

What causes Gilbert’s syndrome?

It is a genetic condition. People with Gilbert’s syndrome have a faulty gene that means their liver has problems removing a substance in the blood called bilirubin.

Normally, when red blood cells reach the end of their life (after about 120 days), haemoglobin, the red pigment that carries oxygen in the blood, breaks down into bilirubin.

The liver converts bilirubin into a water-soluble form, which then passes into bile and is eventually removed from the body in urine or stools. Bilirubin gives urine its light yellow colour and stools their dark brown colour.

In Gilbert’s syndrome, the faulty gene means that bilirubin is not passed into bile at the normal rate. Instead, it builds up in the bloodstream and can cause the skin and eyes to take on a yellowish tinge.

Other than inheriting the faulty gene, there are no known risk factors for developing Gilbert's syndrome. It is not related to any lifestyle habits, environmental factors or serious underlying liver problems (such as cirrhosis or hepatitis C).

What triggers the symptoms?

People with Gilbert’s syndrome often find there are certain triggers that can bring on an episode of jaundice.

Some of the possible triggers linked with the condition include:

  • being dehydrated
  • going without food for long periods of time (fasting)
  • being ill with an infection
  • being stressed
  • physical exertion
  • not getting enough sleep
  • having surgery
  • in women, having their monthly period

If possible, avoiding known triggers can help reduce your chance of experiencing episodes of jaundice.

Who is affected

Gilbert’s syndrome is a common condition, although it's not known how many people are affected because it doesn't always cause obvious symptoms. Some estimates suggest that up to 1 in every 10 people in the UK may have the condition.

Gilbert's syndrome is more common in men than women and the symptoms usually first become apparent around puberty, possibly as a result of hormonal changes.

Diagnosing Gilbert's syndrome

Gilbert’s syndrome can be diagnosed using a blood test to measure the levels of bilirubin in your blood and another type of blood test, called a liver function test.

When the liver is damaged, it releases enzymes into the blood. At the same time, levels of proteins that the liver produces to keep the body healthy begin to drop. By measuring the levels of these enzymes and proteins, it is possible to build up a reasonably accurate picture of how well the liver is functioning.

If the tests show that you have high levels of bilirubin in your blood, but your liver is otherwise working normally, a diagnosis of Gilbert’s syndrome can usually be made with confidence.

In certain cases, it may be necessary to have a genetic test to confirm a diagnosis.

Living with Gilbert's syndrome

Although it is a long-term condition, Gilbert’s syndrome does not require any treatment, because it does not pose a threat to health and is not associated with any complications or an increased risk of liver disease.

Episodes of jaundice and any associated symptoms are only short-lived and will eventually pass.

There is no reason to modify your diet if you have Gilbert’s syndrome and the standard recommendations on diet and exercise still apply.

However, you may find it useful to avoid known triggers for the condition, such as dehydration and stress.

If you have Gilbert's syndrome, the problem with your liver may also mean you are at risk of developing jaundice or other side effects after taking certain medications. Therefore, you should seek medical advice before taking any new medication, and you should mention to any doctors treating you for the first time that you have the condition.

Medications that should be used with caution if you have Gilbert's syndrome include some types of HIV medication, some forms of medication for high cholesterol and some chemotherapy medications.

Page last reviewed: 26/02/2014

Next review due: 26/02/2016

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Comments

The 15 comments posted are personal views. Any information they give has not been checked and may not be accurate.

liz222 said on 30 July 2014

This would explain why so many of us get nausea and stomach cramps/digestion issues:
http://www.ncbi.nlm.nih.gov/pubmed/11490829

I personally suffer terribly with eating grains and would like them to investigate why this is.Diorrhea, nausea, food starts coming back up....now heartburn too as well as clamps and severe bloating of stomach after meal and most of the month.

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Monterey275 said on 19 April 2014

It’s very helpful and interesting to read the comments from other GS sufferers.
Around 20 years ago following a lengthy period of poor health I was diagnosed with ME and GS but at that time the doctors put my ill health down solely to ME. However, I wonder if all along it has been GS? I say this because over a 20 year period my symptoms (fatigue which is sometimes sudden and chronic, nausea of a morning, tender tummy, ibs, foggy head, and awful concentration) flare up from time to time and have a dramatic impact on my day to day life. At its worse there is a genuine fear of collapsing.
Similar to others sufferers, I feel worse of a morning and recover somewhat as the day progresses. This actually poses a problem in itself because after resting and eating throughout the day, which aids the body getting back into better balance; people wonder if I can really be that poorly of a morning?!
The morning fatigue causes me another worse problem because I have a lengthy commute into London and when I leave the house my weakened system means I feel like I am functioning on only 30% of my energy levels. The thought of feeling ill on the journey creates further anxiety which just adds to the problem.
I continue to try and find a way to bolster my energy levels of a morning.
Has anyone had similar problems and found a way of boosting the start of their day?
I am clutching at straws but if you don’t ask…..
Best wishes

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slou80 said on 15 April 2014

I was 13 and diagnosed with gs back in 1993. It was apparently a little known diagnoses and my mum and i had to find out about it by ourselves. Just like some of you have said, three are no other known family members with this condition. I too have had years of depression, fatigue, acid reflux and numerous other similar conditions to all of you, including headaches and stomach cramps. I have just been diagnosed with post viral fatigue following a bout of glandular fever and been told to take it easy for a while. I was also lacking in b12 and was very interested to find this was also a common problem with you...suprise, suprise.... my bilirubin count is also higher than my "normal" level . I'm actually relieved to hear that even the things I've been ignoring; the acid reflex, for example, which i had previously put down to being that thing that happens after you have children, might be explained by my gs. All your helpful comments have prompted me to re look at my condition, its symptoms and how i can better manage them through my lifestyle. So thank you all for sharing....oh and beer related issues? They don't call me lightweight for nothing! I stopped drinking beer after i realised i could only manage 1/2 pint without being very ill! So thanks for noting that too and putting another piece of the puzzle that is me back together. X

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liz222 said on 07 April 2014

I've had fatigue and stomach issues (i think gastroperasis now) for about 14 years. Just got diagnosed with Gilberts syndrome, and finally makes sense for why i felt more tired than my friends all those years. I've always struggled with alcohol, from about age 20 onwards, as in made me feel ill so didn't like drinking very often. Now that i know others have stomach issues, i can do things to help my liver - like taking SAMe and Milk Thistle. And splitting my meals into 6 small meals a day. I think doctors think that if they can't give you drugs, they should just deny symptoms exist, but there are lifestyle adjustments one can make, so it is helpful for doctors to be honest about symptoms instead of just denying they exist.

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Mary1504 said on 21 March 2014

GS is an enzyme deficiency which means your liver not only doesn't process bilirubin but a range of other chemicals that are processed by the same enzyme (UGT). You need to explain this to your GP as certain drugs processed by the pathways of the liver which are affected will make you feel very unwell, and can induce jaundice, stomach pains and vomiting. Most particularly this includes certain antibiotics. This so-called 'benign' condition affects certain people with GS much more as the genetic string which is affected differs slightly across individuals. You can find much more information and stories at gilbertssyndrome.org.uk I hope it helps you as it has me.

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Fisha90 said on 15 January 2014

I was lucky to find out i had GS when i was born back in 1990. The NHS has taken vials and vials of blood for testing through the years to monitor my condition. Milk thistle is one of my fav's to get back to normal however when i do take it after tea time and go to bed i may sleep for a long time. I've slept up to 13hours after feeling really bad because of GS. It's hard to stay stress free if your working. So make it so that you have plenty of sleep and and have the right food's. normally a easy 12pm-8pm job is good as you can rest through out the morning and wake up by your own not by alarm clock helps. Drinking loads of water to keep hydrated no fizzy drinks. water with squash is what i have.

Depression is a key to this as it does make you feel run down and feeling a bit sorry for yourself. But it's normal to have that when it plays up.

Stomach cramps and abnormal pains is what i normally get when it plays up. I always take milk thistle when it plays up that bad and then go to bed.

Search on google for good diets for GS as it has helped me through out my childhood into my adulthood.

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anna0289 said on 19 December 2013

I found out I has GS last year and although it's not life threatening it definitely explains a lot! I've always needed more sleep than most people I know, about 10 hours a night to feel 'normal'. And in my adult life I have always had the most horrendous hangovers compared with my friends and even suffer from 'sugar hangovers' where if I have too much sugar, the next day I will feel like I have a mild hangover, headache, tired, dehydration etc.

I've also noticed that I'm much more sensitive to prescription drugs than most people I know, usually needing a lower dose than the doctors expect (though I'm sure this isn't always the case for everyone)

So, even though it's not life threatening, it is worth managing your life style, eating habits etc in order to make the condition less prominent.

There are a range of supplements that can help with GS, such as Milk Thistle, Dolomite, Green tea, B-vitamins and I'm sure much more. I take a few different ones. Although they may seem expensive sometimes, it's worth looking after your health, so you can get the most out of life.

I hope you all find ways of managing your GS so you can be happy and healthy :)

xxx

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cherrylee said on 06 October 2013

Hallo everyone

I was diagnosed with GS in 2008. Didnt think anything about it until 2009 when I became very unwell with liver pain, jaundiced and a billirubin of over a 100. They checked for everything and and thought it was gaul stones but USS proved there was nothing dilated bile ducts. MRI proved my liver was normal except for haemangioma. However I was unwell for a while waiting for bilirubin to come down and felt absolutely shattered. I was in hospital for a wk and discharged home with pain kellers only. They informed me it was GS. I stayed home for another week before the jaundice cleared.
Now I have every sympton you guys have shared, acid reflux, bowel problems, slow emptying... fatigue, poor immune syatem, (you get a cold and it lingers on and on), needing more sleep, low libido. I feel for the lady up there that menitoned her boyfriend not being interested at all, I am like that. All I want is my undisturbed sleep. I spoke to a coleague who is an Upper GI consultant and he told me that yes many of his patients with GS complain of all these problems and some suffer with anaemia which also increases the fatigue.
I am hoping to open a research one day into it because we can not all be hyperchondriacs.
One day we will know that we were not crazy after all.

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EleriC said on 30 September 2013

I was diagnosed with GS about 5 years ago and was told that it is benign. However, I always thought that it was a sign of imbalance within the body - generally if your body is not excreting waste as it should, then the liver and kidneys have to work harder.
I went on many sites trying to find out why I was so wiped out and discovered that many people with GS often felt exceedingly tired, ached a lot, got dizzy/faint, depression and had various other common issues alongside it.
Last week I was diagnosed with Fibromyalgia and the specialist said that Gilbert's syndrome was a symptom of this, as were the other issues such as Vasovagal Syncope (fainting).
Around 1 in 25 people have Fibromyalgia and 1 in 20 people have Gilbert's Syndrome. Although not everyone with Gilbert's syndrome will have Fibromyalgia, if you are suffering with other symptoms it is worth looking into.

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Dreamcatcher51 said on 08 September 2013

My boyfriend has Gilbert's syndrome. We have been together a few years now and I have often noticed the yellowness around the eyes and will ask him if he feeling unwell. He drinks plenty of water and eats regularly but he does seem to need a lot of sleep. And despite that he is always tired and run down lately. I love him but I am losing patience with him as his mood is often low. We don't have sex at all and haven't done for quite a long time. I think he should get checked by the GP but he says there is no point. But I can't live like this, no fun, no sex, no excitement. I know I will be badly thought of for saying this but I am bored. He can't help it but he makes little effort and sometimes I think the Gilbert's is an excuse :o/

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janey37 said on 17 July 2013

I am new to GS. Had a blood test result in january which showed raised bilirubin. Doctor suggested GS. I had no symptoms at the time. Doctor said it was a benign condition with no symptoms. Since march ive had upper abdominal pain on and off, nausea, tiredness, reflux etc. Had ultrasound to rule out gallstones. Been at a loss at all these symptoms. Was amazed when i read the info and posts on this page. Can anyone suggest anything to help with the nausea? Its bad first thing in a morning and eases off as the day goes by. Get very tired in an afternoon and have to have a nap straight after work. How often do the periods of jaundice come and go with GS? Any advice/info would be appreciated. Thanks.

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lookbright said on 13 May 2013

I was diagnosed with GS when I was over 60,whilst having blood tests for food poisoning. The Consultant said as I had had it all my life and did not know about it and it was not life-threatening, to carry on as usual. Thinking about the past, my only symptoms appeared to be that the whites of my eyes were always a yellowish colour and if I was ill with anything (thankfully I am not ill often) I would look as if I had jondice. Occasionally I am tired, but put that down in the past to over-working and late nights! I have had no stomach problems and continue with a healthy appetite.

If it is a genetic fault, none of my relatives on either side of the family appear to suffer from GS.

Everyone is different, so health problems anyone has could be the result of something unrelated to GS.

I am optimistic about the future and do not have time to worry too much about my health.



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guido21 said on 29 March 2013

I was diagnosed with GS in my 20s (now in mid 30s) and have been suffering from nasty cases of acid reflux for the past few years. I hadn't made a connection between GS and acid reflux until I saw these comments and read a little further into it. I was also given omeprazole and was on and off zantac etc for years but always felt bloated and fatigued and generally uncomfortable. I drink very little alcohol and was very annoyed when an A&E doctor made the assumption that I was a heavy drinker when my blood test returned a result of 'abnormal liver function'. Even after explaining about the GS he still gave a sarcastic nod/smirk.

After getting fed up and trying out some different natural treatments I recently came across the book 'Why stomach acid is good for you' (google it) which basically says most people suffering from acid reflux have too little stomach acid rather than too much. As recommended by the above book I stopped taking all acid blockers and starting doing the complete opposite, taking acid supplements instead (HCl & Pepsin). It seems insane at first but it works great for me. Mastic Gum and B12 supplements (apparently if you have low stomach acid you can't absorb B12 leading to further fatigue) also seem to help. My stomach hasn't felt this calm in years, digestion is more efficient and I have much more energy. I hope this info can help someone else.

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noragain said on 28 January 2013

I totally agree with Teslatrooper. There is a huge difference in opinion between those in the medical field and those with Gilberts on the symptoms. My husband suffers constantly with numerous symptoms. Acid reflux, lump in throat, burning tongue, fatigue, depression, the list goes on and is the same for many sufferers. Doctors do not taking the condition seriously and often diagnose gs late in life. It is a relief to know there is a name to the condition and gs sufferers are not hypochondriacs. Unfortunately, once diagnosed, they are left to find their own way of coping with a condition that seems far from being harmless.

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Teslatrooper said on 09 December 2012

I would like to say that there seems to be a huge difference in opinion between those in the medical field and those of us with Gilberts on the symptoms. There is a good website out there that anecdotally gathered experiences from several hundred people, but sadly it is no longer updated. The specific interest I have is the link between gs and gastroparesis. Around the same time the nhs investigations ruled out hemolytic Anemia, and being told i most likely had gs, I developed acid reflux in the throat. Prior to this I had chronic bloating and ibs like symptoms, which two years down the line I still have.
Was basically given omeprazole and told to take it if I felt it worked. I tried to get off it and managed for a while but had to get back on again. Recently I tried getting off them again and had severe acid reflux the first 2 days. I read a medical research article that showed a link between gs and delayed gastric emptying. So decided to try a gastroparesis type diet of "mini meals" eating 6 small meals instead of 3. For the first time in over a year I had no reflux. The only difficulty is trying to balance this around work and also dealing with the constipation associated with gastroparesis.
Again anecdotally many people have reported a wide range of symptoms perhaps not all related to the condition. But mine also include severe fatigue starting from my late teens early twenties, depression/anxiety,sensitivity to fumes such as smoke and perfume,feeling bad even after only 2 beers.

Although not harmful reportedly people with gs have higher rates of gallstones. I think more research needs to be done on this condition, as I know there's alot of miserable people out there.

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