You’re yellow, you feel sick, can’t think straight and are exhausted, wha
t 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%.
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
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
I’d like to find a place to check out some good diets to look into for best health out look
Hi Rea, dietary advice will continue to be posted, stay in touch, regards, Adina
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.
I have a client who has Gilberts and i was hoping to find some good foods i could suggest for him.
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.
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.
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
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?
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
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.
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
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.
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.