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Gilbert’s Syndrome
About four years ago my middle son, at the age of 21, was working down at the shore over the summer between his junior and senior year in college. He became ill and called me to come get him.
When I picked him up I noticed immediately that he was jaundiced. He complained of feeling nauseated and very tired. He also had a mild fever of 100 degrees.
When we arrived home I called our family doctor to get my son in to be seen as fast as possible. I began to put the pieces of the puzzle together (you know how us nurses try to diagnose even when we know it is not our job) and decided it might be hepatitis. The doctor did blood work and the results were negative for hepatitis but his liver enzymes were elevated. Upon examination his liver was enlarged. Of course at this point I was ready to sign the papers for a liver transplant to donate part of my liver whether I matched or not. The doctor kept his head (unlike me) and said he wanted him seen by a gastroenterologist.
We immediately contacted a specialist and after a thorough medical history and exam he said he believed my son had Gilbert’s Syndrome. They believe Gilbert’s Syndrome to be hereditary (maybe that explains why I always have elevated liver enzymes but always test negative for hepatitis). The syndrome is caused by glucuronyl-transferase deficiency which causes an elevation of unconjugated bilirubin resulting in jaundice. My son had exacerbated the condition because he was working long hours and not eating regularly. There is no treatment. With rest and a good diet he started feeling like himself again and was able to go back to college in August.
Comments
Comment from Nurselady
Date: November 2, 2006, 8:47 am
Yes, we are lucky in that although he does have some stomach discomfort and has to watch his diet, he has minimal symptoms Occassionally he becomes tired and the jaundice reappears. In my reading on Gilbert’s syndrome, symptoms vary from very mild to more severe. Have you read any information on diet? I know avoiding alcohol, fatty foods and sugars are important. There are many sites on the web that discuss diet but you should check with your physician before trying any remedies
Comment from peter
Date: November 3, 2006, 11:04 am
to be honest w/ you, doctors do not care for it. They know it’s not life threatening so they don’t care. Its all up to you and yes, you are what u eat especially w/ this syndrome. I on the other hand eat whatever i can and deal w/ consequences afterwards. Digestion problems are always there, no matter what. Sometimes, I do notice that some days are better then others and i still cant put my finger on it why that is. Is it the food or perhaps sun exposure, stress, i really don’t know. My biggest thing is the yellow skin. 99% of the time i look like im dead. Black circles around the eyes and yellow skin. u can just image it. Fatigue is another issue. i can write a book on that. i can also write a book on how when i got to a specialist. i get the usual ” oh yeah we really don’t do anything w/ that since its very normal for most Europeans.” now how about that? And u would think that after all that money that goes to my medical plan is it really worth it? Hey anytime.
Comment from peter
Date: November 3, 2006, 11:09 am
i did a little research on it and found a lot of stuff but all in the testing. chinese medicine is another. Chinese supposedly know how to treat it but good luck finding someone who knows what they r doing. i was actually thinking about acupuncture place. maybe they can do something to relief some symptoms. who knows. who knows. oh by the way, i have a twin brother who has the same symptoms. Funny though, i can never gain any weight, only loose it. so many questions, so little answers.
Comment from nurselady
Date: November 6, 2006, 9:18 am
Peter, One herbal remedy that has mentioned alot is milk thistle. Suppossedly it helps clean the liver. Have you asked your doctor about it?
Comment from peter
Date: November 8, 2006, 10:30 am
no. and im pretty sure that he wount even know. see docs are not really interested in herbal medicine. they feel they have to have stats in order to tell their patients about it.
Comment from LILIAN PEREDO
Date: February 14, 2007, 2:09 pm
tengo una prime con todas las caracteristicas de esta enfermedad los medicos la han desauciado necesito ayuda por favor
Comment from peter
Date: November 2, 2006, 5:48 am
and thats it, thats all you did cause i tried but still i am so yellow that i look like a ghost. and tired.