Gilberts Syndrome as an Athlete

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My Struggle with Gilbert's Syndrome

In 2016 every one of my fingernails turned a deep shade of purple. Being a generally healthy person, I was naturally concerned. So I visited my doctor and she instructed me to wait it out. A few weeks later my nails were a funny shade of yellow. My doctor ordered a blood test. In a span of 2 months I had 3 blood tests conducted. The result was Gilberts Syndrome. As a competitive runner I was afraid this syndrome would effect my performance. My doctor assured me that Gilberts Syndrome is benign, with no symptoms or problems. She is wrong. After my diagnosis I finished my track season with really solid times. I hardly thought about Gilberts Syndrome. I cut out dairy from my diet and began to eat healthier, this seemed to help me until recently. At the start of this year, I began to struggle with sickness and the general feeling of being unwell. It was almost like I couldn't shake it off. I would feel so exhausted, but I thought it was from my track workouts. I knew something was up when I started to experience bad stomach pains. During one of the busiest weeks of my life (I was juggling school, track meets, dance rehearsals, and my ap tests) I started to feel very anxious and stressed. This came with the yellowing of my nails and really bad stomach aches. It kept me from performing well in track, and it was beginning to get into my head. As someone who hates being sick, the fear of being sick began to consume me. It took me a while to realize that my Gilberts Syndrome was the cause of my mysterious sickness. I did a ton of research online and found forums of people discussing their symptoms, I felt relieved (I wasn't going crazy!) Most doctors believe this syndrome to be passive, so they don't document its symptoms and effects. In reality, I've learned that only 1/3 of people with Gilberts Syndrome don't experience symptoms, the other 2/3 do! This was a surprise to me, after reading more I learned people struggle with the same symptoms as me; stomach pains, exhaustion and feeling unwell. It's relieving to know I'm not the only one going through this, but scary that there's no known treatment. As a high school student it's hard to cut stress from my life, so my Gilbert attacks never really go away. I was expected to run really well in track this year but my times have suffered from me being sick. I'm planning on changing my diet again and really trying to eliminate as much school work as I can. I'm hoping that doctors will soon realize the cost of having Gilberts Disease, because it's tough dealing with something people don't think is real. If you have any stories of your struggle with Gilbert's please share! Especially if you're an athlete. I can't figure out if running helps my syndrome or worsens it. Running is known to flush out your system (waste materials such as lactate) but it also takes a lot out of you, which is why I'm struggling to understand the concept of running with Gilbert's.

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  • Posted

    Nice story.
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  • Posted

    Hi,

    I was high level athlete till my late 30th. Competitive skier and triathlete. When I first started getting tired, had constant abodminal pain, I ended up at liver specialist who told me I have Gilbert. He said regular people's liver is like a truck full of stuff and 5 guys unload it. Gilbert S. people have only 3 guys to unload the truck. Which means it takes longer for our liver to process what we eat. As you know stress is the biggest trigger. Fear is huge trigger. In past 8 years I have been teaching people how to break through fear and anxiety. It is also your awareness when you start feeling tired instead of panicking to be gentle to your body and brain. Think of your body as a factory and your brain as all departments. If any of them is in overload it will show up wherever your weakness in your body is. I also find that it comes in cycles. I had PTSD from my son's ski accident - 9 years ago and it got worse. My husband passed away 2 years ago and it got worse. There are unexpected events in our lives that we cannot control and if they are stressful your Gilbert will most likely trigger more. As to your jogging, do it in small doses. Definitely find a way to lower your stress at school and in life. It is #1 trigger. I am 54 so I am way ahead of you, but when I ski now I take breaks on the way down. It doesn't mean that I cannot ski, it means I do it as much as my body let me. Hope it helps. Dana 

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  • Posted

    Below is something that I wrote recently on this forum and perhaps this might work for you also.?

     

     

    I was diagnosed with Gilberts and told there was no cure and not to worry, but my bilirubin levels were over 100, and I had a yellow tint to my eyes.

     

    After reading lots of rubbish cures promoted by companies making money, I found information about how the liver works.  One important function for the liver is to break down and eliminate substances which the body can find toxic.  Thus spices are broken down in the liver and then eliminated, but this obviously causes the liver to work hard.

     

    Further reading showed that for some people reducing any stresses on the liver would reduce the bilirubin levels in the blood.  Therefore I completely stopped eating ANY spices.  No curries, no peppers, no herbs etc.  ( Some very careful supermarket shopping is required here )

     

    NOW my bilirubin level is a much more manageable 27, and has been steady at that figure for several years now (it must be 8 years).  ‘ Normal ‘ bilirubin is listed at 17 or below …

     

    So I would recommend a trial spice free diet..  Obviously it will take at least a month to have effect, since the liver has to both repair, and work with the new ‘normal’.

     

    What have you got to loose..?

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    • Posted

      I've only recently been diagnosed with GS and when tested my levels were quite low at 27, however, I felt extremely fatigued and, on occasions, really dizzy. I was just wondering if you still felt your symptoms now your level of bilirubin has dropped to 27?

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  • Posted

    I have found similar problems relating to exercise and have found that I have had to reduce the intensity of my exercise/training.  The majority of my training related to weightlifting/resistance work and I would enjoy intense workouts.  I wasn’t diagnosed with Gilberts until about the age of 30, after months of battling fatigue my doctor also advised me that it was a benign condition, with the only side effect being occasional jaundice.

     

    My wife is a naturopath and has done a bit of research.  I am paraphrasing as I have little understanding and retention of what she told me, but I believe it that the enzyme that isn’t functioning that well in Gilberts suffers, also assist in breaking down preservatives and assists in dealing with stress.  So mental and physical stress will impact you.  I can no longer perform high intensity training without being flat the following day/s, instead my training is lower intensity and more aimed at volume.  I do not perform HIIT training anymore or go past failure.  Diet has a big effect on my energy levels, I had not heard too much on the processing of spicy foods and I do not eat hot spicy food, but I might have to try eliminating all spices and check my levels.  I try not to eat highly processed foods, fatty foods and high sugar foods, as well as eliminating foods with artificial preservative.  The thing I find that helps me the most is water consumption, I drink at 4-5 litres of straight water a day, including during the night. I will drink water before bed, forcing myself to get up during the night, and when I do get up I drink some water then.  I have stopped coffee and stimulants as I found it was triggering stress and anxiety.  I would also avoid medication and alcohol where possible and be aware of things that you consume that your liver will need to process, including some suppliments.

     

    I think there a lot of similar symptoms for the 2/3’s of people that do suffer, but there may be other symptoms may not relate to Gilberts, it’s hard to know fully.

     

    Good luck

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  • Posted

    I also have Gilbert's syndrome. Recently I've had to have my gallbladder removed and also got diagnosed with GERD (persistent acid reflux). All this and I'm only in my 20's.

    The Gilbert's used to really effect me when I was a little younger. Same symptoms as you...tired, moody, sluggish, odd pain etc. I was also getting adult acne. This is all related to liver function.

    My liver tests are still suspicious...doctor says I have some sort of liver disease but biopsies etc come back normal. However I will tell you that the one thing which really helped me was diet. DIET!!!

    You need to start eating healthy (it may seem like you are doing this now but in most cases you're wrong). Cut out caffeine and alcohol from your diet. These are just huge burdens on your liver. Be very careful about canned or processed foods. Read ingredients to make sure you're food is low in sodium and absolutely avoid things with artificial chemicals like preservatives, colours, flavours etc. You can also try to cut out or at least limit your gluten intake. These all put extra strain on your liver.

    Also avoid refined carbohydrates like white pasta, white rice, sugars etc. Incorporate more fruits and vegetables in your diet. Limit your intake of meat, especially salty and heavily processed stuff like bacon or salami. Use only olive oil or coconut oil in your cooking. Limit your intake of potatos too, these are known to irritate your gut because of the heavy starch. You need to learn to love your vegetable dishes. Substitute meet with beans, lentils, etc. In other words you need to eat clean and give your liver as little work as possible. Taking liver supplements like dandelion and others can also help. I would also take a digestive enzyme like lipase which helps your pancreas produce juices needed to break down your food better.

    After switching to a diet like this I got a lot better. Acid reflux was cured and Gilbert's hardly bothers me anymore.

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  • Posted

    Keep running!!! I was diagnosed nearly 20years ago w GS and run about 3 miles a day, and occasionally 10 to 12. I used to have pretty bad yellowing of the eyes when I ran, and sometimes fatigue. A couple years ago I started using a few supplements from a pretty informative site called GSLiverHealth.com. One of them is a liquid extract, and the other is the taurine. I’ve noticed a huge improvement on both fronts – the yellowing and the fatigue. Anyway, I think u should keep running, just listen to your body and stay hydrated. Good luck. 

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  • Posted

    Hello, I was diagnosed with Gilbert´s syndrome being about 20, I am now 38 and with a good physical condition. I never read something negative about the syndrome and recently reviewed the medical literature published in the last years about the topic... I recommend you do the same because there is very interesting data about the syndrome being a protective factor for many diseases including cardiovascular and age related diseases as bilirubin has been found to be a potent antioxidant. In fact, there is a large study that shows having the syndrome cut mortality risk by half compared with people not "affected". There are some concerns about metabolism of some liver metabolized drugs, that is true, and I avoid taking medications (by the way, have not found a reason to take them as long I can remember), but for I have read until now I think you should find another explanation for your symptoms.

    Gilbert's syndrome and the risk of death: A population‐based cohort study. https://doi.org/10.1111/jgh.12279

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    • Posted

      Please don't praise bilirubine as antioxoidant!

      There are many other probably better antioxidants!

      Bilirubine (unconjugated) is neurotoxic and there may be connection with shizofrenia and GS.

      For that reason GS needs more research as it can be life devastating condition.

      When your liver don't work well you may would to find more toxins in your tissues!

      Not every GS is the same!

      Homozygous SNP UGT1A1 can be found other time heterozygous, or even in the other part of UGT DNA part SNP violations.

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  • Posted

    HI, i wonder if you/anyone is still following this thread. Anyway, I was diagnosed about the same time as you in 2016. Except I am (now) 55 years old. My numbers are around 30 umol/L so not very high. My only symptoms are to do with abdominal bloating and sickness after eating certain things. And what really sets me off are high starch foods (I think) and high temperature oven cooked carbohydrates - so I'm not keen on roast dinners. Other stuff I try to avoid are mashed potatoes, white rice, sweet potato, a lot of root vegetables. Alcohol. Anything with too much sugar and/or fat.

    I love coffee though and so far I am getting by on 2 a day.

    I'm also sure it gets worse during the winter months when I don't get enough sun. (I'm in Bristol, UK)

    As for exercise, I can only say for me I think it's only a good thing. I cycle about 5,000 miles a year. And I'm not cruising, I generally ride pretty hard.

    This year I rode La Marmotte, a one day event in the French Alpes, which was 110 miles with over 16,000 ft of climbing. My legs were OK but after too many energy bars and energy drinks I started to feel awful (halfway round). I think this was GS spoiling my day but I could be wrong. I poured away all the sugary crap and then stuck to plain water and a banana or two but the damage was done and I still felt sick for the rest of the ride and consequently, from then on, I definitely didn't drink or eat enough. So my analysis is that the exercise part is fine with GS, it's diet which is the difficult part, especially on an endurance event.

    Apart from that, when my GS has been bad, it's always in the depths of winter and when I've taken my eye off the ball regarding diet.

    Hope this is of some use.

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