New to Gilbert's and this site

Hi Emily

I was diagnosed this time last year after seeing the doctor complaining of tiredness and aching that were out of proportion to my age/lifestyle/diet etc. He simply advised, after a sequence of bloodtests, that I had Gilberts. He followed it up since my Bilirubin was raised at the higher end of the range even for Gilberts. He advised that my exercise routine was the most likely cause of a spike, but it was simple and benign Gilberts and I shouldn't worry, 'the end'. 

Then I linked my IBS symptoms to the Gilberts, and my skin/eye colour and the changes to that colour that happened from time to time. 

I kept a diary for a few months rating the following; diet, water, sleep, exercise, achiness, tiredness, vitamin intake. My doctor advised that I limited my exercise regimen but I refused and still refuse to do this. I have since completed the New York marathon and I am training towards the London marathon in 8 weeks time. I have no plans to stop this, and in fact, I only decided to train for a marathon after my Gilberts diagnosis.

I have noticed some patterns with my management of the Gilberts in controlling the symptoms. These are anecdotal with no evidence base, but I will share for this discussion regardless. 

SLEEP. I try and get 8 hours sleep a night, that said, with two young kids, it's not always straight forward! What I have noticed is that if I feel the need to nap or sleep, then I need to do it! I noticed that on a weekend, if I was tired and lethargic, a proper sleep in my bed really does the trick. My wife and kids simply have to accept that it's needed for my wellbeing. 

DIET. I'm not the best at keeping a strict diet. Fats DO NOT agree with me and I have IBS symptoms. When i'm really good with sleep and diet and exercise, my IBS symptoms tend to go. I did start with milk thistle and felt it helped when my diet was poor, I also felt maybe they made me feel worse in other aspects so I have since stopped taking them and do not intend to start again. I'd prefer to keep a good diet and avoid the milk thistle. Hydration was massive for me, without realising, I was going a full day on maybe one drink. I ensure that I keep well hydrated and this has been the singlemost important change to my lifestyle since diagnosis. I find that keeping well hydrated has helped. 

VITAMINS. I take Calcium and Magnesium in one vitamin tablet and also a B vitamin complex as a separate tablet. I feel that the B vitamins do have an effect. 

EXERCISE. I have struggled a little with the balance of Gilbert's and fitness. Put simply, I have felt my very best when my fitness levels were at their max (and sleep/hydration/diet were okay). However, when I was building up my training, the achiness and tiredness from the training added to that from the Gilberts. I simply feel that high fitness levels are vitally important to me. The healthy lifestyle reduces stress and improves sleep quality, it also makes eating healthily more palatable (no pun intended).

WINTER. I don't know whether I simply suffer from seasonal affective disorder, but my symptoms recurred this Jan/Feb time. I reckon they are improving (psychosomatic maybe) in the knowledge that Spring is round the corner.

EAT BETTER, KEEP HYDRATED, SLEEP WHEN SLEEP IS REQUIRED, DON'T UNDERESTIMATE EXERCISE. Thats my advise anyway!

I hope you find my experience useful.

Mike

Somewhere I read that Magnesium was (either) good or bad for Gilbert Syndrome.  I am fairly newly diagnosed.  My doctor also acted like it was no big deal and nothing really to be done for this.  However, some of the symptoms listed here have plagued me for years with no real causes identified by my doctors.   I am trying a new doctor in a couple weeks. Anyway, my husband and I usually drink powered magnesium in the evening before bedtime.  Is this a go or no? 

Hey everyone!

Literally crying reading all of your messages, I've had these symtoms for 5 years now and I only just got diagnosed today with Gilbert syndrome! ..it was only by accident that I found out whilst taking blood tests related to IBS, which I now know goes hand in hand with the syndrome.

I have never felt so relieved that it wasnt just me being lazy or being a hypercondriac.

I have always had drowsy episodes that would last for days/weeks and bouts of depression but it would come and go so often and be so inconsistent that its been so hard to pin point it to one thing, I just knew something wasnt right. I also get brain fog occasionally, feel irritable towards the people I love and find it hard to recall even recent memories.

Then for the last year or so (after starting my first major job after graduating = more stress than I was used to before) I have been suffering with IBS, and in the last few months my body seems to be rejecting foods related to wheat and lactose.

From all of your insights into your symptoms and ways of improving it I see that the only solution is trying live a normal healthy active lifestyle but its hard to cope when you are feeling low and tired.

I;m one of those people that forgets to drink enough water, so Im going to improve on keeping hydrated and eating less protein and more veg.

Have any of you also found that you have developed food intolerances that were not a problem before?

 

So happy to discover this site. Thank god, I am not the only person with this condition. I can relate to each and every one of you. I am 24 now and I have been living with it since forever. I always had yellow eyes whole my life and I have always hated it. I was diagnosed with GS at around 12/13 if I remember correctly and before that it would be a 'jaundice' for any doctors I've went to. My mother would drag me to every hospitals possible and I had to take medicines, medicines and more medicines which never worked any ways.. I would only take plain boiled foods with little hint of salt and the medicines. And I still remember that one time I went to this ayurvedic doctor who claimed to cure it but it failed sadly in my case.

Anyways, after years of successive failure to cure it we came along this doctor who finally shed some light on my condition. He said it was GS and there is no treatment for it and finally my mum stopped trying so hard. I was a kid back then, so I didn't take it seriously. But now that I am an adult and I know I should live with this whole my life, it really bugs me.

Like some of you, I feel tired/ lazy most of the time. I also get this seasonal depression when its winter (not sure if its related). I am allergic to coffee and cheese ( they give me mind fog) which I avoid at any cost. My hands and feet are cold most of the times. idk if its just me but whenever I apply heavy makeup or anything heavier than a mascara on my upper lids, I instantly get mind fog, eyes becomes more yellow and it lasts whole day. So I avoid it now. Same when I am stressed, get less sleep or if I catch cold/fever, etc.

BTW I'm interested to know one thing. I am really wanting to become fit as I am overweight but I worry my bilirubin level might go high (which means more yellow eyes) if I join gym and stuff. Because I have noticed that the yellowness of my eyes darkens if I exercise intensely ( it happened when I tried jogging and I had to stop it) . has anyone experienced this? Should I do only light exercises ?

Hi everyone,

I have been monitoring all groups and all information avaiable on the web regarding GS as i have been diagnosed with it when i was 15 years old but havent had my say yet. I am now 28 so i have been living with all the symptoms everyone has been reporting even before i was 15. My doctors back then believed it was asymptomatic and they say the same to me now. In recent years my unconjugated bilirubin is over 50 mg/dL which has promt me to go privately and seek further help and finally i have found a liverspecialist who has diagnosed me with Crigler Najar Syndrome type 2( Arias Sydrome) which is refered to as GS's big brother. 

The specialist has put me on a phenobarbital treatment 30 mg 3 times a day we will monitor it and see how it goes. From my research GS's sufferres have been prescribed with these and i knew this existed long before i went to a liver specialist.

Something that i have found to have greatly helped me which is guaranteed to help everyone is Sunlight, stress free, enviroment, protein rich food with vegetables and greens, and lots of water. For sunlight i cant emphasise it enough as i have lived in the UK and Cyprus and have been back and forth and have found when i am in Cyprus i feel great, but when i come to the UK i feel sh*t. Sry for the expression. Hope you all feel well, do not neglect your GS, Crigler it isnt asymptomatic. It is not life threatening but it can keep you back in life as insomina, fatigue, stomach cramps, cold hands and feet, the yellowness takes over may aspects of our lifes.

Hi

I went for blood tests last week as not been feeling myself went today for results and he says i have gs dont worry its fine nothing can be done and its life long come back in 4 to 6 week's for repeat bloods

Im in shock but dont know much so im abit lost any help ideas advice please

Thanks sam

Can someone describe the IBS symptoms associated with GS? My son has had two elevated bilirubin tests (1.8 & 1.5). I am inquiring with the doctor about additional liver function tests and upper GI ultrasound to help confirm GS. I am not aware of any IBS issues he's having, but not sure what to look for, and this seems to be a common symptom. What seems to be persistent/ongoing is an allergy type cough, does anyone else experience this?

-AnnMarie

Hi my name is Brandi im 33 i was diagnosed with gilberts syndrome about 2 years ago since then my life has gone down hill slowly i was diagnosed when my dr found a high billirubin through a blood test i was having some issues with eating and i literally was down to 80 pounds i had severe anxiety and depression i ate mashed potatoes ice cream apple sauce tomato soup and pudding for 2 months its been 2 years and ive made a full recovery thank God for that and my dr told me it was bc of reflux and my anxiety the reason why i couldnt eat both symptoms of Gilberts syndrome shortly after i was diagnosed with a kidney stone ovarian cysts an enlarged spleen low plateletts and to top it off now im starting to show signs of lactose intolerance i dont know how many of the issues have to do with gilberts syndrome but any advise would help to make my life a little easier thanks!!!!