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.
1 like, 18 replies
trent40736 a02062
Posted
I have recently been diagnosed with GS. I am 49 yrs old and in decent shape. Presenty I run 5 miles/8 kms 3x per week. I coach my two daughters in team sports. In my youth I was Division I soccer in university and varsity ice hockey. I began to experience worsening symptoms 15 yrs ago while training for a marathon. I'd finish training and feel wiped the following day figuring the increased distance was the only culprit. However certain foods triggered abdominal pain followed by a trip to the bathroom. All the fun stuff foods and drinks around family celebrations - alcohol, bbq meats, desserts, etc. Work stress as a trigger makes me prone to moods, anxious and poor sleep.
For the past 4 years doctors have run a battery of blood work, imaging, ultrasound, dye tracing, etc. to rule out other medical possibilities. No luck and deduced that I have GS.
So as others have rightly pointed out, you have to take control: lower intensity exercise, increase fruit and vegetable intake and avoid refined carbs/foods like pasta, rice, sugar., drink plenty if fluids. it's not fun to be on guard and place limitations on my life but I feel better. My bilirubin levels are constant high side, fatty liver and I feel fatigue every now and then. I still get a stitch in my upper right abdomen on harder runs but some things I can't avoid! keep well and thank you to all for sharing your stories.
Copper-enjoyer a02062
Posted
Hello. It is very sad that you had to go through all of this. Dont listen to people that say that you need to reduce stress or physical activity (but you have to have everyday healthy sleep and sufficient calory intake with good volume of food). The more you move and sweat - the more your body detoxify. The problem there is a vitamins and metals dificiency. I suggest you to take analysis on all vitamins (B1, B2, B3, B5, B6, B7, B9, B12, C, A, D, E, K) and metals (main are copper, zinc, selenium and molybdenum) to check if you have dificiencies. Your mental problems will be gone after your vitamin D, copper, magnesium, b9 and b12 levels will be sufficient. Physical pain can be cured with B vitamins, copper, magnesium. Dont take vitamin K in high doses before you rise your copper levels because vitamin K can rise bilirubin levels. Vitamin K can be beneficial in case you will take vitamin D but dont take too much. Vitamin A is useless, you should check it in blood only to know whether you intoxicated or not. Vitamin C should be avoided before your copper levels stabilizes because it lowers copper dramatically in some people.
Conasata a02062
Posted
I was diagnosed as a child, and having been told it was a benign condition, didn't pay much attention to my diagnosis until recent years (my thirties), and since noticing recurrent flareups of similar symptoms. I have established that I typically flareup after being sick (perhaps due to taking medicines that may be harsh on the liver, and cetirizine antihistamine for allergies), over indulgence such as at Christmas (alcohol & certain foods like roasted root veg oddly), or heavy training (I suspect because I don't eat sufficient calories/nutrients these times but unsure). I realise from reading this thread that I too am much more likely to suffer symptoms seasonally during the winter.
My symptoms include extreme dehydration (I really struggle to get sufficient fluids in throughout the day to avoid waking up feeling hungover with dark urine), fatigue/lethargy, and my asthma flares up (very wheezy) although I think this may be due to the dehydration. A flare up generally lasts 3-5 days for me and only subsides after rest from training and getting back hydrated (>4L water daily).
I presently supplement daily with a milk thistle & dandelion root extract and omegas with vitamin D and it seems to help. Generally speaking, if I've pushed myself too hard with training or over indulgence, I'm liable to suffer symptoms. I find it reassuring to hear that others have experienced similar and hope some further research is dedicated to the area.