Recently diagnosed with Gilbert's Syndrome

Hi Charlotte,

GS is very tough. I was diagnosed two years ago. I suggest for you to join the group on Facebook called LIfe With Gilbert's Syndrome these people who are suffers as well are very helpful.

I hope this helps,

From Joel

I suspect, based on the comments of those that have GS, that the symptoms may go far beyond those that are on the "official" symptoms lists.  Since it is hereditary, and not "fixable", there is no money for research.  I can only find one survey on line, and it is not current.   It is important that you have nothing else going on that contributes to your symptoms.

For me, giving my symptoms a name had two important benefits.  Firstly, I can forgive myself for not being more productive or for not having much energy.

Secondly, if you want to feel as good as you can, you have to live a "correct" lifestyle:  ie lose weight, sleep, exercise, minimal booze.

The effectiveness of supliments will be a matter of personal research.  It seems to be a bit of a crap shoot.

Good luck!

Hi Charlotte,

Some of your symptoms are consistant with what myslf and other GS noteincluding:

Feel extremely tired and weary.

Lack of concentration blank feeling.

General unwell feeling but nothing can pin point.

I agree with Mike, makesure there isn't anything else adding to your symptoms.  i have found the best treatment is 1. getting enough rest, 2. drinking plenty of water (I drink at least 4 litres of straight water a day), and 3. Trying to remove as much rubbish from your diet, eat as many whole foods, avoid fatty and processed foods especially things with MSG, preservatives and addatives.

You'll be better for it in the long run.

I don't care what anyone says, Gilbert's causes symptoms. I mean, your jaundiced or almost jaundiced all the time and jaundice causes symptoms so how can anyone argue that?

I was diagnosed accidently by my gastro fall of last year. I went in for severe vomiting, diarrhea, chronic fatigue, body aches and horrendous abdominal pain, all of which I've since pinned on my Gilberts, though my doctors disagree. By my diagnosis I weighed only 72 lbs, having lost almost 50 lbs in three years. My bili was 8.3 at the time, not crazy high, but as it dropped, I began to see a complete turn around in my health. My bili stays at about 2 now. I currently weigh ~100 lbs again, still thin but not crashing like before. I'm a 23 year old female, 5'6" and on a petite frame, to put that into context.

What worked for me was a clean up of my diet. I went on the SCD for three months to clear out everything. By day two I felt loads better. Now I avoid MSG and Aspartame like the plague, as they're huge triggers. Mostly

I stick to a fresh, chemical free diet, still sticking to the SCD rules on what I've identified as my triggers, but I do cheat. It's all about balance. I also drink an obscene amount of water so my body can help flush the nasties out. I still partake in booze but have much worse hangovers and they set in much quicker. I can avoid this by only drinking one serving.

I still struggle with symptoms if I get sick with a cold, the flu and the like, and I seem to always catch what's rolling through. My main symptom is the abdominal pain and diarrhea. During flare ups I take probiotics and it helps normalize everything enough to be manageable.

I also suffer from anxiety. At my peak, I was pretty agoraphobic and spent 2 years inside, leaving only if I absolutely had to and never alone. This also got better as my bili dropped. Now it's only a minor social anxiety, an annoyance more than anything and it doesn't hold me back any more.

These tips may not be helpful for you, but I just thought I'd let you know what worked for me in hopes something will work for you. I also wanted to just let you know, you are most definitely not alone in this and it can be managed without doctors and pills, it's only a process of figuring out what works for you and your body.

I sincerely hope you get relief soon! Hang in there!

Ultrasound scan results back liver was ok but have also received diagnosis of fatty infiltration of pancreas. Radiographer was not entirely happy with pancreas so now got to have MRI scan.

Doctor also doesn't think the abdominal pain is the Gilbert's syndrome but the website says you can.

Further update 

Have had MRI scan and also have cyst on my kidney.

So last 3 months diagnosed Gilbert's syndrome, fatty infiltration of pancreas and cyst on kidney.

Hi Charlotte,

I am also suffering from GS and have symptoms as yours. The doctor said that it requires no treatment. Have tried many allopathy medicines and it just worsen the case. I suggest you yo go for an ayurvedic medice named "Liv 52/Liver care" and it will help you in much better way. You can get it in amazon.com. Just read d reviews of the customers and if possible watch d videos of Liv52/Liver care on youtube. I am sure you will get urself rid of these symptoms. And the best part is you can take this medicine lifelong as it don't have any side effect.

God bless