Gilberts Syndrome

no.1swimmum

Any GS sufferers here on MSE. How do you cope with the symptoms and does your GP believe that there are any symptoms. my 18yr old son has just been diagnosed and apart from starting taking milk thistle at a loss as what to do for the chronic fatigue, loss of appetite, loss of weight etc. he is a competative swimmer who has had to cut training and competition drastically which he is devistated about as just been offered a place on uni swim team when he starts in October (this is one of the best uni teams in the country and he wants to get better before then) any advice would be appreciated. Thanks

brians_daughter

sorry for being ignorant here, is Gilberts the one that impacts the liver etc?

no.1swimmum

yes, if my understanding is correct it is the lack of the enzyme that affects the breaks down the billirubin. He has been instructed to cut down on fatty foods - not big in his diet, and to limit alcohol again as a swimmer not a fan of drinking, but he is so tired, only managed one lesson at school yesterday and has lost about a stone and a half at 6'7" he now has a 28" waist and is about 78kg

brians_daughter

yes, i thought it was. They have a website gilbertssyndrome.org.uk (just rang MIL for it) My MIL's best friends, son has it. He was awful for years (literally years) but now combats it really weel with lifestyle. I will ask MIL's friend when i see her (onlly lives across road from me) she had loads of info, will see if any of it is web based etc for you if it woudl help? It has had vey little medical research devoted to the illness from what i recall - little is known about it but if you can get intouch with an organisation what can assist its godda be a start?

hermanmunster_3

Think the problem with Gilbert's is that most people who have it are fine and it is discovered as a chance finding on a blood test (for an unrelated reason).

Usually nothing else happens - it is one of those things and they learn to pipe up if anyone queries their liver function tests or they go slightly yellow.

None of the patients I have with Gilberts have any problems with it, though it is possible that others elsewhere do.

As for the OPs DS symptoms - I would query whether they are caused by something else eg Grave's, depression, glandular fever, etc etc

madnessandmayhem

Hi,
I was diagnosed with GS when I was 17 (i'm now 28) after I was a bit 'yellow'-it can be hereditary, and my dad has it, which is why my mum took me to get tested. Most of the time I forget I even have it, but if I am ill, stressed or just a bit rundown (which at the moment seems to be constantly!) then I feel as though I have been hit by a truck! Little common colds etc knock me for 6. Occasionally I get bouts of crampy tummy and nausea which is managable, and from what I have read on the internet something that a lot of GS sufferers get occasionally.
I find making sure I eat regularly and proper meals, and making sure I don't burn the candle at both ends (well, not too much anyway lol) help keep things at bay. But you're probably best looking on the internet for information as there isn't alot known about it by the medical profession-when I was pregnant i had to explain to the midwife what it was! And most GP's would tell you that it doesn't really impact on day to day life, that it is just something you 'have'-mine did anyway! Once your son learns to make small adjustments, and to read what his body is telling him, he will find it easier to manage. If you want to pm me, then feel free!!!! Hope he gets back swimming soon xx

hermanmunster_3

yes agreed - GPs will know about but few midwives (unless they have come across it before in a relative).

patchwork_cat

Talk about irony - I was searching on here last week to se if anyone had Gilbert's. My DH is currently suspected of having Gilbert's -not fully confirmed yet as it is more a diagnosis of exclusion. My DH had an AF event last month and he looked yellow to me at the time, but I put it down to the lights. It turns out he had a BIli level of 41 and 42 in hospital, 29 2 weeks later and 42 again fasting 2 weeks after that ( only fasting because he had lipid profile adn diabetes done at teh same time ) he has had 3 slightly higher ALT's hence the more tests today, but GP thinks he is almost certainly Gilbert's + bigger man - 6 ft brick sh*t house!

Gilbert's is a recessive genetic trait and most people feel fine with it - my DH being case in point as only receiving tentative diagnosis at 42! Has your DS had 2 tests done 48 hours apart with fasting in between? Do any of his other blood work come up with anything? It is quite common with, conservatively, 5% of the population having it. SOme people do say that they have fatigue, IBS and other feeling generally poorly symptoms, but others are fine. http://www.patient.co.uk/doctor/Gilbert's-Syndrome.htm
http://www.gilbertssyndrome.org.uk/Tips%20on%20life%20with%20Gilbert's%20Syndrome.html - some tips on combating the tiredness. http://www.gilbertssyndrome.com/


The thing that I am perplexed about with Gilbert's is if it is genetic then people will have had it all their lives as it is the lack of an enzyme in the liver which they have never produced, so why do people either suddenly become yellow or feel ill. My DH was yellow in hospital, but he has been ill in the past and even my parents both GP's never spotted that he was yellow before, why?

There are good things though Bilirubin is an antioxidant and there has been a small study on the lack of Coronary Heart disease amongst people with Gilbert's syndrome, even to the extent thatthere has been some thought put into supplementing some people at risk of CHD with bilirubin .http://en.wikipedia.org/wiki/Gilbert's_syndrome (mind it is wiki, but have seen some other peer reviewed publications) There is potentially some other long term health benefits.http://www.patentstorm.us/patents/6720189/description.html

kavics17

I have Gilbert's syndrome and I function normally except when getting sick and exhausted at work-usually once in every year only. The signs are that I turn yellow, and can't get enough sleep, I'm constantly tired if under the weather. I am just having one these periods because of the hayfever, my face is all yellow. I don't eat fatty foods, cut down on sweets as well, I exercise 5 times a week and have plenty of fruits and veggies in my diet. I haven't drunken alcohol for the past 18 months and because of the colour change on my skin, I know I need to rest. So I'm on holiday from tomorrow (rather than taking sick leave) till Monday, that should be enough for me to recover, I will make sure that I will have plenty of rest and sleep. I'm 30 by the way and got diagnosed about 4 years ago.

funguy

Gilbert's syndrome is a very common hereditary condition. About 1 in 20 people have this syndrome - it is not a diagnosis of exclusion - there is an easy genetic blood test that can tell you for sure whether you have it or not.

The vast majority of people have NO symptoms from this except for episodic jaundice - some will attribute other symptoms to this condition without any evidence. Plenty of further info on patient.co.uk

patchwork_cat

funguy wrote: »

Gilbert's syndrome is a very common hereditary condition. About 1 in 20 people have this syndrome - it is not a diagnosis of exclusion - there is an easy genetic blood test that can tell you for sure whether you have it or not.

The vast majority of people have NO symptoms from this except for episodic jaundice - some will attribute other symptoms to this condition without any evidence. Plenty of further info on patient.co.uk

Our GP said it is a diagnosis of exclusion. Mostly genetic tests are not done. It is much more common in this country for other things to be ruled out and if it is the only thing then it is gilbert's - unless ofourse you know something our GP doesn't?!!! Can I ask what your qualifications are? If in fact you are also a GP and our GP is incorrect and you request genetic testing which I believed was not the norm here, then happy to request that from our practice.

I believed that while genetic testing is possible it is not widely available and according to the British Liver Trust there is no established genetic test - OP this leaflet gives some basic inof on Gilbert's Syndrome http://docs.google.com/viewer?a=v&q=cache:KRDFRozqDGcJ:www.britishlivertrust.org.uk/content/retrieve.aspx%3Fid%3D1439%26name%3Dc2c6bea48122e63500d71e5e6216b2d0%26type%3Ddocs+gilbert%27s+syndrome+genetic+test+uk&hl=en&gl=uk&pid=bl&srcid=ADGEEShbgM5pu3x1U43KCVf7zkNMhn_1DNKHZ8Y3sGmXKru4jroED8QxrSH7ODLQdr9K8PeqZ8sbm5hV4nTfY96Io7uj_TFTVfrP2OlF1NMhlCDE86OfY29YvibmIjxV2plEaRxVxre0&sig=AHIEtbQL7yP5EfU9sD0hEceWH4VEXo0FSw