My son was diagnosed with Gilbert's in 2018 and we were told that there shouldn't be any symptoms that we should worry about. Our son is autistic and non verbal with additional learning difficulties, so getting to the bottom of any ailment can be virtually impossible.
He has always had bowel problems and struggles to go to the loo. When he is particularly constipated or particularly run down is when his jaundice is at its worst. It is also then that he has his worst meltdowns. Unfortunately having had as many tests as possible, he seems to have been written off my his specialist.
My wife and I have come to the conclusion that his meltdowns are connected to pain spikes bought on by his Gilbert's. They go as quickly as they come and he is usually a very passive boy.
Any insights etc would be greatly appreciated. Sorry for the long post
Written by
RsDad
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RsDad , I just stumbled on this post and can relate to Gilbert’s as I was diagnosed last month after becoming jaundice (high bilirubin); it was also confirmed with a gene test. For the past few months I have been extremely stressed, fatigued, nauseous, sensitive to some foods and lost a bunch of weight (16 pounds) in 7 months despite normal-ish food intake. My bowels have also changed dramatically and I’ve noticed I’ve become more backed up. This has helped my light walking everyday and drinking a few liters of water daily.
I’ve also noticed that when I’m stressed out or don’t rest well that my jaundice slowly creeps in and I experience pain in my ribs (liver area). After meeting with the hepatologist who regarded GS as a benign condition I have read other forums of people with GS who experience similar symptoms. There isn’t extensive research on GS and since it’s a genetic condition there is nothing to be treated. However, I’ve noticed that a change in diet, water consumption, better rest, vitamins and trying to manage stress levels decrease those bouts of pain in the abdomen and lower my chances of becoming jaundice. I joined a page on FB for people who have GS and it has become quite informational. I may have not answered your question but I sure hope you can figure this out. 😀
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