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Hello @derbywife,
Welcome to Connect. I am sorry to hear that your daughter has experienced persistent stomach pain for four years now. I had not heard of Gilbert's syndrome before, but found this, https://www.mayoclinic.org/diseases-conditions/gilberts-syndrome/diagnosis-treatment/drc-20372816. Like you mentioned, Mayo Clinic's defintion does not specifically mention pain.
I would like to invite @barens2 who has recently mentioned they had gilbert's syndrome. I would also like to invite @sockeye and @pamelina back to Connect to talk about their experiences with Gilbert's syndrome.
In the meantime, @derbywife, if you don't mind sharing, are there any specific things that trigger your daughter's "bad days?" What did your medical provider have to say about you daughter's stomach pain in relation to Gilbert's syndrome?
Replies to "Hello @derbywife, Welcome to Connect. I am sorry to hear that your daughter has experienced persistent..."
Welcome back to Connect, @sockeye. And thank you for sharing your experience of Gilbert's Syndrome with DerbyWife.
Sockeye, I'd like to also invite you to the Parkinson's group on Connect where you'll meet a great group of supportive people. https://connect.mayoclinic.org/group/parkinsons-disease/
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My first evidence of Gilberts was in1948 when I had a spell of rheumatism and the Dr thought I had polio. He decided it was rheumatic fever and said he caught it before it affected my heart. My skin turned yellow with jaundice and my eyes were yellow as a pumpkin. They had never been before and we didn't discuss the yellow situation....he was an old country Dr.
In the 60s I had a problem with stomach acid......heartburn....and went to a Dr. and he saw my eyes were yellow and put me in the hospital to check my liver....they were not as yellow as they had been BUT they were still yellow. After a week of tests he decided I had Gilberts syndrome because my liver was OK but it was producing too much bilirubin and he said it would not cause any problem. As far I could tell it did not BUT I had acid problems to this day and have had to take meds. all along for the 84 years I have been here. I don't feel like it has caused pain in my stomach....except what the acid has.
In 1982 I started feeling bad and couldn't tell what was wrong. I went to my family Dr. and he told me it was depression. I thought it was an infection because I felt so bad. He prescribed Doxepin and I still felt so bad I went to a psychiatrist....Dr. Griffin an English Dr....and he took care of me til he died. When he found I had Gilberts (Zilbarz) syndrome he spent some time searching for evidence of my theory... that it was causing my depression. He said he found enough evidence to support my theory....but he didn't have a solution to the problem. And now for about two and one half years I been battling Parkinson's....I hope I don't live long enough to be totally helpless......I am sockeye in VA ....God Bless. ...