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??
0 likes, 17 replies
Kwenda someboy
Posted
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.
someboy Kwenda
Posted
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?
jasond someboy
Posted
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.
someboy jasond
Posted
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.
jasond someboy
Posted
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.
someboy jasond
Posted
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.
pattino someboy
Posted
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.
someboy pattino
Posted
Doctor mentioned stree - that could be a factor to be honest.
pattino someboy
Posted
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
someboy pattino
Posted
elenna78260 someboy
Posted
someboy elenna78260
Posted
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.
someboy
Posted
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...
andree777 someboy
Posted
I've had my gall bladder removed, but when my GS is playing up, do get pain in the upper right epigastric region. If you get over tired or have a virus, you will find that your GS will play up and it will take you longer to get over a virus than normally. Be careful to not get over tired. If you do, you will feel foggy and exhausted and find eating small amounts more regularly will give you a little more energy. Try and stay off spicy or fatty foods and avoid too much alcohol as your liver will have to work harder to absorb the alcohol. If your GS hits you hard after a virus, you will find it hits you like chronic fatigue, the only things you can do are on automatic pilot as you hardly know what you are doing. As your bilirubin comes down to normal levels you will find the whites of your eyes tinged a yellowish color - but they go like this towards the end of your bilirubin being high. There isn't anything doctors can do for us, just try and eat well, don't get overtired and rest as much as you can when you feel your bilirubin going high (you will get to know as the exhaustion hits you like a bad virus).
cara38227 someboy
Posted
My high bilirubin count was picked up in hospital with routine blood tests. I was admitted for a serious bout of IBS. Although at the time it wasnt diagnosed as that.. the specialist that did the colonoscopy and the GP that followed up werent particularly worried either about gilberts syndrome. The ongoing theme for doctors is that is harmless and has no symptoms. Many people who suffer with Gilberts also seem to have IBS or other such digestive issues. Seems to coincidental to me!!
andree777 cara38227
Posted
When GS sufferers are overtired, getting over a virus, recovering from a hospital procedure/operation; it will certainly affect our lives. It takes at least a further week or two to get over these things, even for a very healthy person. We suffer extreme exhaustion and no matter what we eat, being very healthy, it will have no effect until our level of bilirubin drops back to normal levels. After several days the whites of eyes turn a tinge yellow (you will find this happens towards the end of the exhaustion timespan). It must also have an affect on IBS as with excess bile from bilirubin entering our bloodstream and it must affect our intestines. However, also, with a large amount of people travelling to different destinations overseas and eating/drinking different foods, this too must play a large part in IBS as a large number of people do pick up germs in their gut which will take several years to get rid of, in turn giving people IBS.