Gilbert’s syndrome is it seems considered unworthy of further investigations described as benign and harmless. Yet it seems many with it have a number of complaints that seem increasingly common among population. Mostly exhaustion and digestive issues. I’ve joined this forum after putting in a search on IBS forum for Gilbert’s. As hearing more and more that people ‘diagnosed’ which is really a decision made by health professionals- GP usually, that consistent slightly elevated unconjugulated biliruben levels must be ‘Just Gilbert’s’, also suffer IBS. Since joining a Gilbert’s syndrome group on social media I’ve seen there are a few studies done that show that exhaustion and digestive issues are related. This helped me to feel that I was not alone and worry less about my ‘symptoms’. Worry in itself can be tiresome., and be a cause or contributed to digestive issues too of course.
Wonder if others would be helped by reading this too.
9 Replies
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Good morning BobbinRobin,
Thank you for sharing your experience and findings. I am sure that may be useful to others here.
Thank you. I have Gilberts and ibs. Also a history of vitamin d deficiancy which they said would cause my exhaustion. I’ve just had the test again to see vitamin d levels as I’m exhausted again so will be interesting to see, but I do wonder if it’s Actually Gilberts which explains a lot of my problems. Do you have a link to the studies as I’d be interested to read them. Thanks
Hope the link works. The others I’ve seen and not saved. I joined a FB page called Life with Gilberts Syndrome, where I’ve seen others. I found the common symptoms of experiences validating. Off course all sorts of things can cause exhaustion, so I believe it’s the whole mix and Gilberts adds to it.
Hi BobbinRobin, I am new to these forums and was recently diagnosed with Gilbert’s syndrome as I had elevated liver enzymes ALT/AST mostly due to heavy drinking. However, I went to the ER because of jaundice in the eyes/skin which was evident in my unconjugated bilirubin/indirect. It got as high as 3.8 which would explain the jaundice but gradually went down after 2 weeks and also abstinence from alcohol. Total bilirubin was up to 5.8 which was worry some so I was referred to a liver specialist. He completed a genetic test which confirmed Gilbert’s but he hinted at it prior due to symptoms I was having for the last 4 months. Fatigue, rapid unexplained weight loss, insomnia, chills, cold hands, itchy ness... I was diagnosed at 32 years old and never had any of these symptoms prior so I was shaking in my boots when my body started to change. TMI but my bowels since my initial visit have drastically changed as well.
Hi gnillo thanks for writing your experience. I’m glad you got the genetic test, as that can help with reassurance. I didn’t know there was one until about 9 months ago when I joined a Facebook page. I’ve not bothered to try to get one as now mostly able to manage my symptoms and with the pandemic it’s made it easier, in some ways to self care. I eat small regular meals with good low FODMAP protein, and make sure I have a very low sugar diet. No alcohol at all - I don’t like being unwell, so this helps me to do these things to self care, emotionally too. I walk daily and practice yoga or qigong too as this helps especially with stress. It’s taken me years to learn how to self care in this quite disciplined way and I’ve been lucky to find a way to self help and live in a lovely area with sea and forest close by which helps especially in this terrible pandemic. Hope the bowels settle and your able to take good care of you.
Thank you Hidden , it sounds like you have definitely found a better way to live and made drastic changes. I’m happy for you and it sounds even better that you’re near the sea. We usually take our daughter to San Francisco or Cancun yearly so we can’t wait to go again after this pandemic. No alcohol of course as this has been detrimental to my health, fatty liver, anxiety... but I’m taking it day by day and remaining as positive as I can. I appreciate you replying and wishing you all the best going forward. 😀
Thank you Gnillo, keep thinking of how wonderful it will be to take your daughter to San Francisco or Cancun once it’s safe enough again. Wishing you and family all the best too. 😀
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