Advice Wanted on potential Gilberts Syndrome

Posted , 7 users are following.

I'll try to keep this short and sweet but I normally end up rambling on a bit - just looking for a bit of advice.

Basically went to the docs about a year ago as started getting a pain under my left ribs coupled with some changes in bowel movements which was mainly constipation. All this was coupled with a general feeling of tiredness, foggyness, unable to concentrate etc.

From the outset GP seemed to put it down to IBS. Tried me on some various tablets etc but had no effect. Had some blood tests done by my GP which all came back fine and also had an ultrasound and chest xray done which all came back fine.

Got referred to a specialist at the hospital who took some more blood and put me in for a colonoscopy which all came back fine. Had a followup appointment at the hospital a few weeks back just to confirm that the colonoscopy hadn't shown anything up and again the Doctor put it down to probably being IBS and discharged me.

However at the very end of the conversation he mentioned that from the blood tests my bilirubin levels were high which could suggest Gilberts Syndrome but he basically glossed over it, said it was nothing to worry about and just something that they come across on some people and there are no real symptoms etc.

I have since had a letter from my GP just saying that the hospital had made them aware of this and asked them to do some more blood tests to confirm but again the letter pretty much emphasises there is nothing to worry about.

Now I am not worried as such but at the end of the day 1 year down the line I don't really feel any better. On the recommendation of the doctor I tried a bit of an elimination diet to try and see if it was something I was eating causing the problems and have found that stopping eating breakfast cereal has actually got rid of the pain under my ribs but I still have the feelings of tiredness and constipation etc.

To get to my main question - just wanted to know if people think these symptoms of tiredness, foggyness, constipation, lack of concentration etc could be anything to do with this Gilberts Syndrome if I have it or is it just pure coincidence??

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17 Replies

  • Posted

    Gilberts syndrome and IBS are often seen together.

    Some people, like me, have reduced their bilirubin levels with a

    change of diet.

    I removed ALL spices from my diet and the bilirubin level was

    massively reduced and the IBS went away.

    Doctors often under estimate the Gilberts Syndrome effects as it can be so very different for the patients.

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    • Posted

      Thanks for the reply Kwenda.

      Did you remove spices due to some specific advice or did you just randomly find they caused an issue as part of some kind of elimination process?

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  • Posted

    The symptom of tiredness, foggyness and lack of concentration from what I hear can relate to Gilberts.  Personally, constipation hasn’t been an issue.

    Of the 5 people I know who have Gilberts (including myself), 3 get the fatigue quite bad, with 1 having no fatigue at all, he just gets a bit jaundice when he drinks too much.

    Talking recently and it appear that 3 of the 5 also get vertigo (or benign paroxysmal positional vertigo more specifically), this may be a coincidence.

    This is what I find triggers the symptom’s; dehydration, over exertion, not enough sleep/rest, stress, diet.

    I try and drink 4-6 liters of water a day and I find that the most effective (yes you end up peeing a lot).  There seems a lot said on the food you should or shouldn’t eat, I try to limit any highly processed food, foods high in sugar or high in saturated fat.  I haven’t heard eliminating spices but I might give that a go.  I find that exercise shouldn’t be too intense, that will wipe me out for days if I push myself.

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    • Posted

      Thanks for your reply jasond. Since this all started I have been trying to eat well and up things like my water intake but I could probably drink more so will give that a try.

      Based on the fact stopping eating breakfast cereal seemed to stop the side pain I thought I may have Coeliac or something but the doctor ruled that out.

      Is this something (the Gilberts) that just suddenly started causing you problems?

      If this is what is causing me issues I just find it strange that it just seems to have started after 33 years.

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    • Posted

      This sounds similar to me, I had little to no symptoms in my 20’s.  In my early 30’s, along with the fatigue other things seems to come along.  I became lactose intolerant, which I previously consumed large doses of dairy daily without a problem, and some foods just didn’t sit well in my stomach.  I believe I may have had candida at one point, but I never got that officially diagnosed.  I know some teenagers who have problems with it, so I’m a little thankful it took longer to manifest in me.  I’m now in my early 40’s and still trying to listen to my body and what works for other people.

      I try to manage it by eliminating most of the triggers but I do not get concerned by not eliminating all of them, especially the diet factors.  As a result I end up eating a lot healthier now that I have been diagnosed.  I find that the intense exercise/over exertion/insufficient rest, and dehydration seem to be the biggest trigger/s.

      My wife is a naturopath and has done a bit of research, she has the knowledge and just gives me direction. Basically I try and keep the liver healthy.  There was something to do with processing of preservatives also, so I try not to by foods with preservatives in it.  The goal is more raw foods (vegies, seeds, etc), less processed foods that low in saturated fat and sugar. I don’t stick to this strictly but when I’m flat I know I have to recover and then it more of a priority.  I think there is something to do with the/a stress hormone also, so physical or mental stress can be a trigger.

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    • Posted

      Thanks jasond that is all really useful information. I like to think I eat pretty well anyway but always room for improvement.

      Like you one positive I can see from this is that I didn't have any issues when I was a bit younger as that would have been a lot harder I think.

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  • Posted

    I had very strong fogginess half a day for 2 years ,my 46th and 47th year , but my Gilbert's test is mild/low and no Jaundice.

    In my case it could be anxiety and stress which causes me a variety of other symptoms.

    I'm feeling better after avoiding all stimulants ,coffee , tea , chocolate and others.

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    • Posted

      Thanks pattino - I am a big tea and coffee drinker but over the last couple of months I have tried to cut this out or have certainly massively reduced my intake as I thought my issues could be related to that but sadly it doesn't seem to have made much difference.

      Doctor mentioned stree - that could be a factor to be honest.

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    • Posted

      Someboy ,

      I want to add that I went on a mostly organic nutrition ,limiting processed food and reducing chemicals/preservatives ,limiting hot spices , I stopped using colognes , moved to a more natural toothpaste , shampoo and antiperspirant.

      And regarding my sensitive stomach I've learned to read better my reactions to different foods and limiting my panic ,so I always carry with me activated charcoal when the reaction is so strong like a food poisoning charcoal will fix it. ,when my stomach feels quickly full and doesn't want to send food down, I've learned that a beer relaxes it and normalizes it. Another problem is when I have a Joghurt I might get recurring "pinches" in my stomach throught the day and I have learned to disregard it even thought it's unpleasant.

      Enough for now.

      Hope it helps

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  • Posted

    I wanted to reply to your comment about age.  My Father and I both have Gilberts and we both did not have symptoms til our 30's.  Not sure why.  However, my son is 19 and he is already showing symptoms. Interestingly, I wasn't diagnosed til I was 40, but I had symptoms for ten years before I was diagnosed.
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    • Posted

      Thanks for commenting.

      Just thought it was strange if it is Gilberts that something you are born with could not cause you any issues and then suddenly become a problem 30 odd years down the line.

      From what you have said and other comments I have read though it seems common for this to happen.

      Got another set of blood tests booked for a couple of weeks time so hopefully might get closer to some kind of diagnosis soon.

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  • Posted

    Well blood test has confirmed Gilberts - basically got a letter through the post from my GP confirming it and a printout about GS from this site stapled to it!

    Have booked an appointment though to go and discuss further as I still just constantly feel tired which is driving me insane although not holding out much hope of getting anywhere...

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