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Gilberts Syndrome
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I am 56 years old and have recently been told by my GP that I have Gilberts syndrome. I have found some useful information on the WWW at the British Liver Trust, www.britishlivertrust.org.uk. One out of Twenty people have this condition. Gilberts syndrome is a condition in which you have higher than normal amounts of bilirubin in your blood and is connected with how your liver breaks down old red blood cells. It is claimed to be a harmless condition but people do report ill-effects. Such symptoms include:
- Fatigue
- Loss of appetite
- Nausea or dizziness
- Abdominal pain
- IBS
- Difficulty maintaining concentration
- Very dark urine.
Certain conditions are best to be avoided and those below are just the ones that may affect us runners.
- Dehydration
- Heavy physical exertion that can leave you feeling drained.
It is important that you:
- Eat regularly
- Drink plenty of water
- Avoid fatty or sugary foods.
It is also suggested sufferers cannot tolerate eating carbohydrate foods very well, such as bread, pasta, rice and potatoes.
From my own viewpoint how can anyone with Gilberts syndrome run? We all know that the fuel from our liver that drives our leg muscles is Glycogen, which comes from eating carbohydrates! From the statements above, it seems logical to logical to assume that those with Gilberts Syndrome should not run or may not be able to.
Any runners out there with any knowledge or experience of this?
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Comments
I think this was great advice ORR
Here
Thanks Mrs Pig.
I did a search to see if the were any other Gilberts Syndrome threads and it did not find any. Perhaps I added a typo or something.
Mrs Pig
I have been suffering from fatigue and exhaustion following long runs since April and my GP did a blood test because he thought it might be my heart causing the problem. This is when I was told I had Gilberts Syndrome. It takes some doing to affect my mind and I will run until I drop. It is very confusing to see that the medical wizards claim the GS has no affect yet the majority of those that have it report the same problems. My main thought is on the importance of Glycogen and whether or not runners that have GS have experience problems when training up for and running longer races like Marathons.
Do you have GS Mrs Pig?
No I don't.
I was saying that the symptoms could convince you it was affecting you more than it might be? So listen to your body not to anything else?
Lots of people have it without realising. I know you went with fatigue, but again this is really common and might not be linked. I don't have it but I do have another condition that didn't amuse me on diagnosis and the symptoms are a mile long so I recognised that frustrated feeling and also that reaction to what is actually just a label.
Mrs Pig
I think the fatigue etc could well have been overtraining. I agree that it is best to listen to your body and not to be distracted by things that may or may not have an impact on our wellbeing. The information quoted in my first message came directly from the British Liver Trust who you would expect to know what they are talking about. Whatever is said, the liver is a very important organ for runners and it does make you wonder if problems such as GS may cause a reduction in efficiencey. Its a worry when they say you should avoid dehydration and heavy physical exertion, which is very difficult to avoid if you run.
I agree but I would also say that you are probably far better at monitoring your body than Mr Average. I certainly have been more careful with my diet since taking up running because I realise how essential it is to hydrate and fuel properly. Yes you place more demands but you have also trained your body to adjust to them.
I hope someone comes along who knows more in detail and experience
Thanks Slugsta
I must admit that I had no idea that I had GS and looking around on the internet it seems there are a lot of different opinions on its impact. Medical opinion is that it causes no problems and those that have it believe it causes certain reactions. The British Liver Trust report an intolerance of carbohydrates with some sufferers. All very confusing. I intend to ignore it and continue running for as long as I can.
Sorry to intrude, but my little sister has GS and was diagnosed when she was in her mid teens - she's now late 20's. She doesn't run but does lots of cycling, swimming & bodypump etc. She's fine with carbs - she tries to follow a low GI slow carb type diet which seems to suit her and she doesn't have any problem maintaining her exercise - she's pretty fit!
Occasionally she will get a bit tired and the fatigue will kick in; she'll have a couple of rest days then and make sure she eats well and gets plenty of sleep. Otherwise she's absoultely fine and handles a full time job, a fairly dedicated exercise program plus 2 kids under 5. She's been managing her GS for just over 10 years now and it's never been a huge issue for her. I think she just is a little more careful with listening to her body and if the fatigue starts then don't try and train through it - give yourself a rest day.
Thanks Jupitereve
That just the story I had hoped to hear.
I've got this as well - it has no effect on me at all. I run 5 times a week (around 50 miles) and I'm a fell runner - just did Ben Nevis last week in 2:08!
When I got Pneumonia last year I went yellow as well. Bilirubin was very high. Docs in the hopsital gave me an ultrasound of my liver, spleen etc and as they were all normal concluded it was Gilberts. They told me just ignore it....
Thanks Dek
It looks like I dont need to worry. The information from the British Liver Trust seems to be misleading.
it is a bloody normal variant, just get on with youyr life
only an issue if you have an op or a blood test
not that the Gilbert's causes them. A large proprtion of peeps without Gilbert's report the same symptoms!
Absolutely Slugsta
Hello
I was diagnosed with GS about 3 years ago, never really given it much thought as to why I was shattered some days after running until I saw this thread.
Im still running and eating carbs glad to know now why I cant get out of bed somedays after a run
Julie
Hi Julie
The majority who have posted comments consider that Gilberts Syndrome has absolutely no affect on running or anything else for that matter.
I am sitting on the fence a bit because I am not convinced either way. I think Slugsta may have misread the points that the Liver Trust have made (there is a brochure on GS on their web site which tries to put this into perspective which I doubt anyone has read).
Something is affecting me because I am suffering a rather sudden loss of running ability. I have slowed down considerably but still suffer a level of exhaustion that I have not suffered before. I am training up for the Dublin Marathon and it is becoming so uncomfortable that if I had half a brain I would give up.
Hi Old Road Runner
I aint been running for long maybe 4 months has a bad spell of shin splints but I feel ok now except for the GS.
I originally went to the doctors due to me feeling extremely tired after eating pasta or carbs , and that was how they found out I had high Bullirubin and sent me for tests on my liver etc diagnosed me with GS. Does this stay for life of does it go? Still get tired after eating Pasta, potatoes etc. Im only 32 dont seem to have any problems running but some days after running 5k I feel totally exhausted and cannot move
There nothing that I know about which you can take for GS if there is let me know
Good Luck with your Marathon
Julie
Taken from British Liver Trust info on Gilbert's
"While jaundice is the only recognized clinical symptom, many people with GS report a number of common symptoms or effects they attribute to the disorder."
Once you know you have a condition, it's easy to attribute any or all problems to it. The jury is still out on whether or not the Gilbert's actually causes the symptoms although, clinically, it's easy to understand why it might be doing so.
Julie
I am not an expert on this and have only picked up what I know from the Internet (Google). I have not seen any sign of any medication for this. As Slugsta says it is not that certain that GS causes these symptoms. What does your GP say?
Hi
Not been back to the GP - I was originally diagnosed by a liver specialist.
Dont even know if I still have it, im just enjoying running and entering races and eating carbs!
Had gone because of a sharp pain in my belly which wasn't constant, but very painful when it occured and had been going on for about 6 months. My doc said the only organ in the area the pain occurs is the liver. No problem, I don't worry about it, it's just nice to know it's nothing serious even if, as my doc said, it can't be treated. I just carry on running, without letting it stop me and to be honest, it doesn't affect me when running, only when walking around or sitting still and thankfully not constantly. Thankfully, I haven't suffered any jaundice or anything.
Sometimes we get these things and we just have to learn to run alongside them.
Hope this helps, ORR.
Hi suerunner
Thanks for your post. What you have said seems to be a common response.
Old Raod Runner - I just came across this after googling, and wonder how you are doing with this? I was diagnosed with GS a year ago, but was told no real symptoms.
IDuring the same exam, I asked my doctor why I get so tired ONLY on days I run. He sent me for hormone tests, heart tests, and bloodwork, which all came back fine. He asked if I was worried about anything that would make me tired and stressed, Right, ONLY on days I run. What a dummy. Anyway, I googled it and found that GS causes the tiredness! SHUT UP!!!
On days I run, I am fine for my run (I run in the morning), but after lunch I am DONE. Completely exhausted. You could tell me there's a shoe sale, but all I can think about is napping. It is a HUGE inconvenience in my life! I have a job and 2 kids. I'm just lucky to be self-employed, so I make my work schedule around 'nap times'. Fortunately I have learned the art of the power nap, and as long as I doze off for 20 minutes, I wake up groggy, but it clears as times passes,
This kind of tired is NOT the same as that normal tired at the end of the day. It is almost an urgent tired feeling. And the nap helps, but I don't wake up energized - it takes a while to get going.
I am a 39 year old female. I was running 30-40kms/ week in 10k doses, but had to cut back. Time for a run, shower, then napping was eating into my day too much. I still run, but even a 5k jog casues the same tiredness. It drives me NUTS. I am a very high energy person. I have NO other illness. I eat right. I hydrate. I even friggin juice kale! I sleep well at night. I am not on any prescriptions. I drink 1-2x week. We do not eat processed foods. I went vegetarian for a while before knowing what was wrong... didn't help. This came on quite suddenly at about age 35.
Please tell me that you found a solution???
I recall that some runners responding on this thread saying GS has no effect on your body, had a medical background as well as being runners. For this reason I parked this issue and assumed my problem must be due to something else. Its a difficult issue because there are people that report GS does cause problems. I gave up Marathons because the long training runs caused extreme exhaustion. I dont run so much these days because of dodgy knees but since I came off Ramapril, taken for high blood pressure, I seem not to get so tired. Its sometimes too easy to make assumptions on what has caused a specific problem and unfortunately I cant say that I found a concrete solution. It might be a good idea to start up a new thread on the subject to see if there are any new wizards out there that may have some good ideas for you. I am so sorry that I can not give you anything more positive than this.