Hiya Guys, I was diagnosed with Gilberts Syndrome a while back and told I would have no issues with it, wrong! I always feel sick, tired, can't concentrate very well (which doesn't help in school), I get brain fog very easily. All this affects my daily life, especially in school! Doctors just dont seem to care! By the looks of things Im not the only one that feels this way. I have problems with my eating, anyone got any advice on that?
I eat raw vegan and it helps me a lot. I eat small meals throughout the day. More than a snack, less than a meal. I always have water with me, and I avoid all toxins such as alcohol or cigarettes. I even avoid chocolate and all other forms of caffeine. Personally I don't even crave any of these things as my body lets me know they are sickening to me. Good luck!
Oh and p.s. YES I'm having a laugh... I have symptoms too even though they are mild on my regimen, and I notice the symptoms right away if I go too long without eating or eat too much.
Thankyou I will try that! I struggle eating so bad
I constantly feel sick! even thinking about food makes me ill 
Hello Caketin
I have been a Gilberts syndrome sufferer for many years and have managed to live a pretty full life, but yes, you are right, GPs do not fully understand it and some admit to poor training. Its certainly not life threatening but can be very debilitating. Here are my top tips for coping with the tiredness, sickness and at times, what I call the occasional 'crashes' when I have to lie low for a few days and rest up.
Eat healthy and often - avoid big meals/fatty foods etc.. - lots of veg/juices..low chloresterol diet - drink lots of water - little alcohol seems ok, but obviously go easy ( for me 1 glass wine in evening/or pint of beer is ok) - stop smoking if poss ( just done so...again and will stick this time!) - try to rest each day/I take a short nap early afternoon, as this re-charges the battery. This may not be practical but it helps me to manage evenings better - keep fit & healthy, but dont over do things (I bike and walk most days, and go boating too) - avoid too much stress in your life...quite a big factor this, as it runs your immune system down, and when thats low, one is more prone to GS. Perhaps try yoga or meditation too. Milk Thistle some swear by, as healthy reputable herbal.
And above, all enjoy life and keep the balance! Make sure your family and partner (if relevant) know the picture. And understand that at times you wont have the energy to do stuff and feel quite wobbly.
There are one or two websites out there. the best I have come across is gilbertssyndrome.org.uk
Take good care and all best to you. :D
My husband was diagnosed many years ago with Gilberts syndrome and displayed the same symptons, but in his case extreme fatigue and perspiration on exertion. He was told that it is stress related and that certainly is how it manifests ifself. If he's really stressed the symptons return. I know its hard to avoid in this day and age, but may be give it a try and see if it works for you. One other thing he gets (sound gross) his urine gets very dark and his stools become very pail. If this is the case for you it might
explain the sickness, because the liver is unsettled; this is usually his first sign for him. Have you tried relaxation cd's?
I have posted information in the past about amlodipine on this website. I had an episode last year and thought it was connected to the blood pressure medication. Maybe 5 monthns ago I was told that I have Gilbert's Syndrome. I have most of the same symptoms as most people. One thing I've noticed about myself is if I exercise and get my body weight too low that the symtoms really increase. I am on a personal mission to find out what type of doctor studies this specific illness. I would think it would be a Hepatologist, which is a liver specialist. I am tired of being told it is nothing. I'm 50 years old and currently attend college. Some days I am so outside of myself and can't focus on anything. The only thing I've ever really heard about diet is to go on a gluten-free diet. Try the website Gilbertssyndrome.com, the sufferers have to get together and create a community to figure this out, Good Luck.
Hi Caketin96
Can i firstly say a big thank you for your post.
My 16yr old son was told he has Gilberts syndrome on the 9th if April (this year 2015) and we were at the doctors earlier today after feeling fobbed off at the time of being told only for the doctor to say 'its Symptomless' wtf!
Like your self he feels sick, tired, dizzy, has brain fog, yellowing of his eyes, some times has no appetite, has stomach cramps and trouble sleeping. He has had alot of absences from school due to being extremely tired and sickie and just feeling unwell. This all affects his day to day life.
Going to the doctors was a waste of time and my son now feels like he's getting made out to be a liar. The doctor really doesn't care and said it was all stress related.
Im at such a loss and heartbroken to see my son upset.
I see your post was posted over a year ago, can I ask how you are doing know? Have you improved at all? Feeling and eating better? Have you had any more help from doctors? I really hope you are doing loads better .xxxx
I showed my son your post and honestly it lifted him to read there are people going through the same and being told the same. Thank you
Stacey .xxx
Hi Hairdo,
Eating water-rich foods helps me most: Fresh fruit, fresh leafy greens are the best. Green smoothies blended from just those (and water)- such as apple, kale, banana. Half a watermelon for breakfast (two days in a row.) Sprouting nuts and seeds for additional protein (only eat small amounts). Small frequent meals and resting often throughout the day, but also exercising regularly. I'm 100% raw vegan and I don't own a car, I bike everywhere. This regimen gives me more energy than many with Gilberts, I think, but I still have some brain fog and get tired easily and have slightly elevated bilirubin, enough to know that I do indeed have Gilbert's and not some other condition. Good luck to your son!
Thank you Gill Bird .xxx very helpful and i will try your suggestions
Thanks again
Stacey
Dear Caketin96 ,
I am 18 years old and I have been diagnosed with Gilbert's Syndrome just 2 days ago. Before that i was in and out of the hosiptal in the past 2 years. I suffer with brain fog , poor memory , anxiety heart palpitations and alot more. I feel weak almost everyday.. I am a muslim and this month is something we call ramadhan.. it means we have to fast ( not eat )until the sunsets. And honestly i don't know if i fasting is good for me or not , my doctor has not given me so much infromatin about the syndrome. Although he told me i should stay out in the sun at least 15 minutes a day and once i feel abdominal pain i should have a little but of sugar. He also told me to not stop eating because it will make it worse. All i know about this syndrome is that it is a mild liver condition and that it has no treatment. I don't know what diet i should start so tht i don't trigger anything. Can you help ?
Dear samah84076: Fasting has never felt good to me. I tried for just 24 hours and felt quite ill. It is not recommended for anyone with Gilbert's due to our liver problem. However, you could try a modified fast, by cutting out all meat and dairy-- all animal products-- from your diet during that time. Focus on raw fresh fruits and vegetables, and see how you feel! It helps me greatly. best wishes, Gill Bird.
Dear Gill Bird ,
Thank you .. I'll try that.
Although i also suffer from very low vitamin D and my doctor has asked me to have more milk and fish , will that be okay ?
Hello Caketin, and Group.
I have been diagnised w. CFS, acute brain fog, etc. 9 years ago. Constantly have low Vit. D levels, fatigue, hair loss, insomnia, etc. No one diagnised me with any other health condition, other then GS.
I have been diagnosed 5 years ago w. Gilberts Syndrome. Not sure how long I had it, that's the first time I heard of it.
The doc is telling me that the GS is a completely harmless condition but I beg to differ. My symptoms are improving sometimes, then they get worse. What I realized that when my condition is better, my bilirubin level normalizes, and when my condition gets worse, my bilirubin goes above normal. Seems like my level of bilirubin goes paralel with my level of well being.
Woudl love to hear from you guys.
hello guyz. i am 36 years old and was diagnosed with gilbert syndrome when i was 27. before that i didn't know what I had and got admitted several times to the hospital with gastro on my discharge card. i have all the conditions mentioned above. its like a roller coaster ride up and down. anyways i am not here to tell you about my downs. i want to help people with my experience.
1) We shouldnot exert ourselves. mentally or physically or take any stress.
2) avoid carbohydrates try eating more protiens chicken breast etc. this depends frm person to person but i feel energetic with protiens
3) there are times my energy is so low.. so just rest and relax and be low. because the liver will detox itself automatically when you rest yourself.
4) very very important keep eating every 3 hours. if u feel hungry or no. avoid fried,oily and spicy. this also depends if you can eat these things eat but for me i get severacid reflux so i usually eat bland.
5) there are different types of days morning low evening also low so chill you arenot alone. normal people also feel low. there is one time when we feel good i usually feell good in the evening that doesn't mean i over use my energy coz morning again i am so low. so control yourself when you are high on energy.
we have a life with variations. 1 day good 1 day bad. the days may be more or less. but thank god. our reward is with him. i heard a person needs energy for sins and we all have so limited energy that doesn't suffice our day to day work. anyways take care and also i was recently tested with low vitamin d. if you guys also try to bring up your deficiencies.
my doctor tells gilbert is nothing little elevated bilirubin thats it for him but not for us. now i wrote so much. there are times when i will not have energy to read all this also hahaha.. remember guys my doctor says only little elevated bilirubin he says concentrate on your vit. d deficiency hehehehe... guys if u low lay low... when u high still lay low only... all the best try to follow these things i pray to god you will feel better..
some patients doc. has adviced to eat sugar and go i. sun for 15 min. ... i cant eat sugar cause the next day i feel more low so it depends from person to person... anyways god bless and relax
I was diagnosed with GS four years ago, at age 15. I will definitely attest to the fact that it is not asymptomatic. I am constantly fatigued, so much so that it affects my schoolwork and athletic participation. I also have a very poor immune system, and it takes me weeks to recover from colds and other illnesses. I also experience poor concentration, weakness, and nausea. I do occasionally experience mild jaundice, especially when dehydrated.
I seem to have the same list of symptoms. I found that although supplements to help the liver and gallbladder function better help, diet plays a huge part in my day to day condition. I am addicted to sugar, and I find that days when I manage not to have any are much better then days when I have some type of dessert. The stomach discomfort and nausea come on the same day I eat the sugary treats, the lethargy and mental fatigue follow the next day. Foods that are not organic, and or have some chemicals and additives, for example store bought mayonaise, also have a negative effect on my well being. I am trying to cut out all chemicals, non-organic food, and sugar from my diet, and hope for the best. I am also sensitive to some supplements like Milk Thistle, and MSM, so I am limited there also. Hope this helps Caketin96.
Gilbert's syndrome is a good thing. It is positively correlated to longevity, good cardio vascular health, and even resitance to certain forms of cancer.
Try searching Gilbert's Syndrome and Longevity
Try searching Gilbert's Syndrome and Heart Disease
Very encouraging discoveries have been made ove the last eight years or so.
Hi Guys, I was diagnosed about 10 years ago, since then it has been a rollercoaster of symptoms.
My Most recent was obviously feeling completely exhausted, foginess and slurred speech, i have stopped drinking alcohol about 6 months ago, yet sometimes i give off a smell of it, something to do with my blood glucose.
I have bought milk thistle but i need assistance with a proper diet for Gilberts, am i losing my mind or does anyone else have severe crashes now and then?
#dyinghere
Hi Guys, I was diagnosed about 10 years ago, since then it has been a rollercoaster of symptoms.
My Most recent was obviously feeling completely exhausted, foginess and slurred speech, i have stopped drinking alcohol about 6 months ago, yet sometimes i give off a smell of it, something to do with my blood glucose.
I have bought milk thistle but i need assistance with a proper diet for Gilberts, am i losing my mind or does anyone else have severe crashes now and then?
#dyinghere