Recently diagnosed with Gilbert's Syndrome

Digestive health
1

Hi 

I am 46 and just been diagnosed with Gilbert's syndrome due to bilirubin levels in blood being high on last few blood tests.

I have had my gall bladder removed 20 years ago.

The doctor told me that it is purely hereditary but no one else in my family has been diagnosed. She also said she doubts my abdominal pain is GS but have seen this is one of symptoms. Also been told no treatment and GS does usually cause people trouble, so why do I feel like this.

I have had pain over last 6 month under right ribs on and off but last 4 weeks been bad. I am awaiting a scan on my liver to check nothing else going on.

Symptoms I have had is severe abdominal pain under right rib.

Feel extremely tired and weary.

Lack of concentration blank feeling.

Itchy skin usually arms face and occasionally legs.

General unwell feeling but nothing can pin point.

Always had bowel problems from constipation one day to soft and keep going another.

Last few weeks also acid feeling in chest.

Is this normal and how often will I feel like this, is there any advice how to deal with Gilbert's syndrome as is there any treatment out there.

Many thanks.

2

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

3

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!

 

4

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.

5

Hi

Thanks newly diagnosed so going to have a lot to learn although seems like had signs for long time.

Got liver scan this week so this will hopefully show nothing else.

Will start looking at how best to change my diet and stuff.

I drink lots of diet fizzy which not the best.

6

Hi

Thanks yes having a name Least know it is a reason for feeling like this and looking back have done for long time.

Newly diagnosed so hot lot to look at I suppose.

Sleep always need more never enough.

Alcohol not an issue very rarely drink only holidays & special occasions although this bad bout came on not too long after last holiday.

Will need to look at diet as know that not great and drink to much diet fizzy.

7

Thanks will look at this.

8

Atificial sweetners may be very bad for you, and will likely NOT help your digestion.....

9

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!

10

I agree with the water consumption, though I try not to go over 5lt a day.  I do find if I’m particularly flat if I down one to one and a half litres over about 10mins that this helps to flush me out and I feel a little more energised.  I also suffered with anxiety after getting symptoms in my early 30’s which I never had before.  Luckily I never had any stomach problems.  Does SCD stand for Specific Carbohydrate Diet?

11

Thanks 

I do have rather a lot of aspartame as drink lots diet fizzy, tried to give up but withdrawal is awful. Will have to try again I think.

12

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.

13

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.

14

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

15

Thanks for the information I will check it out. 

16

My daughter too has just been diagnosed with Gilbert's syndrome she has had ibs for years n also vitamin d deficiency along with lots of other issues including really severe psoriasis.

17

This is how I have been feeling. Having dizzy spells for nearly a year coming and going. Feeling nauseous, and sometimes after eating I feel a burning in my chest. It has really got me down at times. My doctor said it’s likely I have Gilbert’s syndrome. I was told a couple of years ago now. No help from them though.