Gilberts Syndrome No Symptoms, you having a laugh?

Julie96007 I'm a raw vegan :D that's what works for me!

Hi my son was diagnosed with Gilbert syndrome early this year and he was told no symptom except could experience jaundice but like you he has got symptoms one of which is bringing up how whole meal after he has eaten like straight away does anyone else experience this ?

Hello All my fellow GS sufferers.

Im an 36 y/o Male, Canada. I was diagnosed with GS in 2000 at the age of 19. I was told by my GP that I would suffer from time to time with abdominal pain, light jaundice and fatigue. I have over the years struggled with yellowing of my eyes, but nothing really extreme however enough for people to ask me if I am feeling well. Oddly when I notice I am Jaundiced I tend to feel at my best. I have found that drinking a lot of water through the day helps with the colouring of my urine. Morning times I have quite dark pee, but generally I consume easily 2 litres of liquid a day including coffee and teas with to adverse affect. I know some do tend to have symptoms with drinking caffinated beverages but I however seem to be an acception. I have noticed I feel pretty groggy the day after I have anything red meat. I avoid Beef most times, but some times I enjoy it. Once or twice a month a roast or steak. I mainly stick to white meats, turkey and chicken or pork. 

I am a bit obsessed with watching the amount of Iron I take in my diet. I have very high levels of iron and watch the levels closely. Because GS, my Liver and Spleen process Iron differently, I have an abundance of it. I have an enlarged speen, I am told it is in the "regular - large " area but safe zone that they dont need to remove it. I dont really have any issues with either organ other than cramps now and then. I can eat dark greens with no problem. I do avoid high vitimin C like orange and apple juice. Those tend to make me feel aweful the next day because Vitamin C helps the creation of Iron in the blood... yadda yadda... I moderation is not so bad.

Personally, I have read that GS is not so bad on the side of longivity and healthy life. I have been recently tested for cholesterol levels and was told it appeared as tho I was being treated for cholesterol, it was that good.. I read that GS helps to heaps to keep those levels lower than the general population. I have taken comfort that there are some upsides to the downsides of GS. 

As far as diet goes, I eat what I want and fasting doesnt bother me greatly. I tend to balance the amount of Iron I eat and the amount of Vitamin C I take, thats really all and Its going on nearly 20 years I knew I had GS. Generally I feel fine, I tend not to get sick, however I cant seem to shake sinus issues! 

Hope what I have said helps some who have questions or are new to GS.

Goodmorning all, i have been diagnosed with GS since i was 15, it was there before but doctors did not see it and mu parents misstook it for thalassemia trait which i also have.

So now i m 29 talked to specialist gastroenterologist and he has prescribed be as a last resort to phenobarbital. Although i might have to use this medication all my life i don't mind as when i look in the mirror i dont look jaundiced anymore, maybe a little pale as i live in the UK.

So not looking jaundiced makes me feel like i m much better, i am a frequent gym goes and lift heavy but also eat alot of food.

I am really starting to embrace my hunger rather than feeling hungry, i know for a fact that not eating or missing a meal stresses me and makes GS worse, so i can suggest eat small meals frequently.

Tiredness is something i have not coped well with in my life but i for sure know i need more 8+ or more to function well. Get less sleep i am like a robot.

Vitamin D as i have seen mentioned before is very important, i had lived in sunny country before coming to London and i was diagnosed twice with low vitamin D. Very important guys..

For me, gluten/grain free diet has helped reduce stomach symptoms, I've recently cut out alcohol, which has helped stop headaches and lack of energy, as well as food with added flavourings & msg, chocolate is also a problem...  I believe lowering your carbohydrate, particularly sugar will help. Anything that requires the liver to work harder appears to be a bad idea. 

This cuts out a lot of fun food & drink, and for most of the time I'm fairly strict, but an occasional break in the diet for a night out is ok for me, provided I leave a day for the hangover... 

 

hello to all  ive  never been able to compleatly  be normal my whole life FROM AGE 15    it has gotten worse   but (im 53 NOW    unless i take many herbs  daily  i fall into a tail spin    but if i eat lots of fruit  each day  (lots) ILL TAK ELIMES  APPELS STRAWBERRIES  WATERMELLON  WHOLE RINES AS WELL BLEND AND DRINK    (WASH MOUTH WITH BAKING SODA  TO MUCH  ACID )   and take  methinone  licerish root    heaLS ALL  (PRUNILLA VUALGARUS)   AND   YELL DOCK AND DANDILIOIN ROOT     YES DANDILION ROOT   IS THEBEST ONE OF ALL     THEN I FEEL  PRETTY  ENERGETIC almost hyper  moving around  but still if i sit long i feel tired     just th emethionine  alone will help some younger folks  and eating tons of blaCK LICERRISH  A DAY  THE EXPENSIVE STUFF  THEY DO HAVE CAPSUELS THO     THSI ALL IS WHAT IVE DONE   NOT THAT I RECOMEND  YO U   TRY IT  IM NOT A DOCTOR

hi Caketin96

This is what has worked for me:

Stick to eating lots of leafy green vegetables and carrots. Minimal sugar. Be careful of certain fruits high in sugar content. A cleansing type diet helps. Think of diets like paleo diet.  low on fats. avoid most grains if you can. Really avoid preprocessed type foods!!

I am not a vegetable eater by nature so I bought a vitamix blender and put my veggies in there with an apple and/or small amount of citrus fruit. Also I include a hunk of ginger root for cleansing. Taste is so-so but i definitely feel better when i stick to it. Give it a week or two to really feel better.  Olive oil instead of any other type of oil for cooking is better as well.

Also, environment is important. Try to keep clean dust free environment, and stay away from lots of chemicals, perfumes , stuff like that.

And drink plenty of water.

Seems like a lot but it does help me and when I fall off my diet or get into an environment that is not friendly I can really tell.

Good luck

 

To reply to everyone here: 

I haven't been "formally" diagnosed with Gilbert's, but I do have an elevated Bilirubin level. I have extreme fatigue, the first 24 years of my life, I basically napped everywhere I could (classroom, bathroom, bedroom). Brain fog was extreme. 

The only thing I've been able to do is to treat the symptoms of fatigue, by going to a sleep doctor, having them do an MSLT test. This will show whether or not you fall asleep during the day despite 8-9 hours of sleep during the night. Unsurprisnigly, that's exactly what the test showed. I still remain extremely sleepy during the day. 

I was proscribed Nuvigil 150mg to treat the symptoms of fatigue, which I was hesitatnt to take at first. But I had tried every single supplement to comabt fatigue such as B-vitamins, rhodiola, and none were enough. Nuvigil was life-changing. However, the efficacy wears off after a few months. But I stop taking it for a day, and that helps to "restart" my response to the drug.

Today, I'm now on Provigil at about 133 mg daily, which is less effective than Nuvigil, but I don't have to be awake at 6 am, so I don't need anything as powerful as Nuvigil. Hope that helps you all.