There is hope for Gilberts! I promise

Edited , 10 users are following.

Im a 25 year old male who has been suffering from Gilberts Syndrome for about 4yrs now. Initially I had no idea what was wrong, especially since my whole life Ive been very healthy. 

 One day  when I was about 21 or 22 I began experiencing severe abdominal pain that would send cold chills across my body, as well as diarrhea  7-10x a day, Fatigue and Anxiety for  about 3 years straight. 

I work and go to school so just leaving the house used to terrify me because I knew how much pain I was going to suffer during my commute and time at work. 

I let this go on for almost two years before I sought help because my anxiety had grown so out of control becuase of the symptoms that I was experiencing that I became extrmely depressed and constantly in fear that I had something serously wrong with me; but didnt have the courage to face any sort of bad news. 

Instead I silently suffered while being dependent on otc anti diarrheal's as well as expereincing significant weight loss because of my fear of eating due to the pain and diarrhea. 

Finally one night after a long hard day of work, all day pain, diarrhea and extreme depression I finally broke. As I was sitting on the cough I had the worst panic attack of my life. 

Ultimately ending up in the ER and coming clean about eveything to the ER doc. 

They gave me some xanax and told me to see a GI doc about it. 

I went to my primary care the next day determined to get answers and stop living in constant fear and pain. 

After having labs drawn, EVERYTHING CAME BACK NORMAL!!! 

Except my total bilirubin which was 2.4 I believe. Significant elevation per my primary care. He referred me to GI where I underwent more blood work and abdominal CT as well as test to rule out Celiac disease and things like that.

Days later all results came back NEGATIVE.

Except this time he has done a "fractionalized bilirubin" test that showed conjugated and unconjugated bilirubin. The only abnormality  in my lab work was the unconjugated bilirubin. 

That finding confirmed that it was Gilberts Syndrome. The GI doc explained to me thay Gilberts is very misunderstood thus treatment options are not plentiful. 

He recommended a few things that changed my life:

1) Metamucil 2-3x a day

2) Alprazolam 0.5 as needed

3) Reassurance that Im a healthy person that just has a slight genetic abnormality that does not affect life span. 

4) No greasy foods (or at least try)

5) No Caffeine

6) Avoid spicy and dairy when possible. 

7) Tomato & Radishes (they lower unconjugated bilirubin.)

The next few days I took his advice and began taking Metamucil, Eating non greasy foods like sandwiches and chicken w/ rice, started taking Alprazolam for anxiety as needed, stopped googling symptoms and watched out for trigger foods. 

The metmamucil bulked up

my stools and got rid of the diarrhea and abdominal pain by day 3 or 4. 

The Alprazolam allowed me to breathe, relax, sleep, feel like a normal non anxious human being

and the diet changes helped me to

avoid flare ups. 

I keep loperamide with me every day just in case I may get diarrhea of abdominal pain once in a blue moon but rarely use it. 

The last two years since making those changes my life has been back to normal!!!!!

I dont have daily diarrhea, abdominal pain, hemorrhoids, anxiety or depression. 

I suffered for years out of fear and emabressment. Gilberts Syndrome is very poorly understood but dont give up! 

I cried myself to sleep for almost two years, lost friends, isolated myself  and got to the lowest point I have ever been all becaus of this stupid condition. 

Dont give up. You wil find your regimen eventually and get your life back!!!!!

Ive had labs drawn a few times since then and my unconjugated bili has been down to almost normal for about 2 years. 

Also dont forget to eat before you get any labs drawn for bilirubin levels. 

Those with Gilbert's will have increased bili when fasting.

Good luck everyone! I promise it will all be ok and you can always ask me any questions you like. 

1 like, 7 replies

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7 Replies

  • Posted

    Hey

    Good to see things your trying is helping doesn't work with everyone and that is the problem.

    No matter when I go to the doctors there nothing they ever give you I have only been given a leaflet and rarely had any given as  Gilbert Syndrome isn't serious so no much they can do to help been told but the amount of people I know get sent to hospital for scan etcs but I never get any only got a blood test to tell me I had Gilbert Syndrome and leaflet and that was that get on with my life simple as that no matter what I take or eat or stop nothing seems to work. Always get told I look not well everyday but it is my condition that makes that look so not much I can do about it.

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    • Posted

      I empathize completely. The feeling of hopelessness this condition causes and the lack of care from most medical professionals makes the situation even worse. 

      I work as an RN and was in college when this began, even though Ive done a ton of reaearch about Gilbert's Syndrome it seems like there is no "true treatment".... which is beyond frustrating. 

      I wish you the best in your journey and will send my best wishes your way that you find something that helps you to live a NORMAL life! 

      Hopefully your doctor can at least prescribe you some sort of anti-anxiety medication (benzo) 

      They dont fix the problem but they can really help with the constant anxiety and also slow down the GI a bit so it'a not so overactive. 

      good luck bud

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  • Posted

    Thank u for taking time to post!!! Very helpful!!! ❤️
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  • Posted

    man, thanks for posting, this is giving me hope
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  • Posted

    thanks for sharing your story! made me feel a lot better. I was diagnosed with gilbert's about 11 years ago. I am still trying a bunch of things, and some things are helping like supplements. i found a few on gshealth.com that i am still using today. good luck with it. there TOTALLY is hope with this disease!

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  • Posted

    woke up pretty tired today and i think it's because I wasn't drinking enough water yesterday. That seems to help a lot. oh and i made a mistake, that website i was using i just realized is gsliverhealth.com. anyway, i hope that you are managing this ok, and please post here any other remedies you are using. thank you!

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  • Posted

    thank you for this post- i was recently diagnosed with GS after 5 years of abdominal pain and having my gallbladder removed recently.

    im scared its something more life threatening.

    my total bilirubin has been steadily climbing since last summer.

    some say my eyes a jaundice while others say they are not.

    i am going back to GI to have more tests done to be sure its GS.

    my job is very stressful and i dont handle stress well so that could explain the increased total bilirubin.

    feeling comforted after reading this

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