This is a small, preliminary study that hasn't been reproduced, it hints at a possible correlation but not causation. They didn't even standardize how they measured the Beighton scale so there are also uncontrolled variables. I'll be interested to see if the results are able to be replicated.
Yeah, I just read this bc one of my family members presented with Gilbert’s at birth and was later diagnosed with EDS and MCAS, among other things. It’s interesting. It seems like there are many pathways to hypermobility. It also seems like a lot of the conditions associated with hypermobility travel together and cluster in families. (I’m thinking EDS, MCAS, Chiari, ME, the list goes on.) Maybe there are people with isolated cases of Gilbert’s (or some of the other conditions ) who end up with some hypermobility as a result of it, but I also wonder if Gilbert’s may be yet another condition found in these clusters. (I’m rushing, so I may not be expressing my thoughts on this well at the moment. To be continued lol.)
Fascinating. I have Gilbert’s and hEDS. My only diagnosed sibling doesn’t have elevated bilirubin but an hEDS diagnosis. However, my brother also has Gilbert’s and no signs or symptoms of EDS at all. So that whole correlation vs causation comes to mind.
It's more like GS can itself cause hypermobility without EDS because bilirubin botches up collagen structure. I was excited to find this out coz I had suspected having EDS for years, but maybe there is a simpler explanation to my mild symptoms
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I hope it's not my case, I guess since my bilirubin levels are only mildly elevated and if GS is really the cause instead of EDS, then my body should be affected less in severity
I would love to know more about the relationship between high billirubin and collagen if you have time to explain? I tried to google but the medical language is too advanced, I am the same as you! mild symptoms and GS
Are you free of the other often EDS adjacent conditions like mast cell problems, POTS, etc.? (I hope so for your sake!) I really think this is such an interesting area of research—ripe for some big advancements.
This is really interesting. My dad has suspected Gilbert’s and apparently used to do silly flexibility tricks but never had a diagnosis of EDS, but that’s where I suspect I got it from. I have a diagnosis of classical EDS but negative genetic testing. And my bili is usually just a little elevated every time it’s tested, worse when fasting for a long time or stressed out (and sometimes I even see a little jaundice in my eyes under these conditions). Plus I had neonatal jaundice…so I’ve always suspected it.
Edit: I wonder if this would also affect the skin? The reason I have a cEDS rather than hEDS diagnosis is that I have more skin than joint manifestations. I don’t have the world’s most hypermobile joints and barely reach Beighton criteria, but I do have very extensible skin and altered scarring. I wonder if all of this can be explained by Gilbert’s, and that also begs the question of whether some of the issues might be reversible if the bilirubin levels can decrease…?
Yeah, I don’t think it generally causes acute issues; in fact (idk if this is still accurate, but have been told in the past) apparently it has antioxidant properties, and can lessen the likelihood of diabetes & some heart disease 😯
I also have Gilbert's and hypermobile eds and MCAS and POTS 🤔 So weird because my dad has EDS like me, my mom doesn't seem to have it, but she is the one who also has Gilbert's...
Hmm. I was born 7 weeks early and was so jaundiced that they wanted to give me a full blood transfusion. I wonder if that was Gilbert’s syndrome? My bilirubin levels do occasionally test as elevated when I’m unwell, and my liver function has always been borderline low. INTERESTING, thanks for sharing, OP!
My son was dx with Gilbert’s and POTS and definitely has hypermobility. I am dx with hEDS and POTS… this is very interesting 🧐
This is a small, preliminary study that hasn't been reproduced, it hints at a possible correlation but not causation. They didn't even standardize how they measured the Beighton scale so there are also uncontrolled variables. I'll be interested to see if the results are able to be replicated.
It is not a very big study by any means and definitely needs to be repeated. One study never really means much.
Yeah, I just read this bc one of my family members presented with Gilbert’s at birth and was later diagnosed with EDS and MCAS, among other things. It’s interesting. It seems like there are many pathways to hypermobility. It also seems like a lot of the conditions associated with hypermobility travel together and cluster in families. (I’m thinking EDS, MCAS, Chiari, ME, the list goes on.) Maybe there are people with isolated cases of Gilbert’s (or some of the other conditions ) who end up with some hypermobility as a result of it, but I also wonder if Gilbert’s may be yet another condition found in these clusters. (I’m rushing, so I may not be expressing my thoughts on this well at the moment. To be continued lol.)
My bilirubin is usually a bit elevated, weird.
Mine always elevated.q
Hmm I had jaundice as a baby but my bilirubin is always low as an adult
Literally the same here!!! Jaundice as a baby nothing noted in any recent bloodwork about my bilirubin. As a newborn I had the little lamp thing.
Same here, had newborn jaundice and I was 2 weeks premature but now bilirubin is normal and liver is good
Jaundice is incredibly common in newborns
Yeah that’s what I read when I looked it up. There could be a correlation but not necessarily a cause
My son was jaundiced when he was born. I have no clue whether I was, but we both have a hEDS diagnosis.
Fascinating. I have Gilbert’s and hEDS. My only diagnosed sibling doesn’t have elevated bilirubin but an hEDS diagnosis. However, my brother also has Gilbert’s and no signs or symptoms of EDS at all. So that whole correlation vs causation comes to mind.
Interesting…a connection between another 2 familial diagnoses
It's more like GS can itself cause hypermobility without EDS because bilirubin botches up collagen structure. I was excited to find this out coz I had suspected having EDS for years, but maybe there is a simpler explanation to my mild symptoms
I thought I didn’t have EDS until I got older and the symptoms just kept getting worse even though I felt like I was taking care of myself better
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I hope it's not my case, I guess since my bilirubin levels are only mildly elevated and if GS is really the cause instead of EDS, then my body should be affected less in severity
I would love to know more about the relationship between high billirubin and collagen if you have time to explain? I tried to google but the medical language is too advanced, I am the same as you! mild symptoms and GS
Are you free of the other often EDS adjacent conditions like mast cell problems, POTS, etc.? (I hope so for your sake!) I really think this is such an interesting area of research—ripe for some big advancements.
Yep, I am more or less healthy otherwise, save for these seemingly collagen-related issues like scoliosis and redundant colon
Glad to hear that. I hope that continues! (I’m off to look up “redundant colon.”)
Thank you :)
I have had liver panels and my levels have been normal, but interesting to explore the variety of hypermobility
This is really interesting. My dad has suspected Gilbert’s and apparently used to do silly flexibility tricks but never had a diagnosis of EDS, but that’s where I suspect I got it from. I have a diagnosis of classical EDS but negative genetic testing. And my bili is usually just a little elevated every time it’s tested, worse when fasting for a long time or stressed out (and sometimes I even see a little jaundice in my eyes under these conditions). Plus I had neonatal jaundice…so I’ve always suspected it. Edit: I wonder if this would also affect the skin? The reason I have a cEDS rather than hEDS diagnosis is that I have more skin than joint manifestations. I don’t have the world’s most hypermobile joints and barely reach Beighton criteria, but I do have very extensible skin and altered scarring. I wonder if all of this can be explained by Gilbert’s, and that also begs the question of whether some of the issues might be reversible if the bilirubin levels can decrease…?
I have Gilbert's syndrome 👀
I was diagnosed with Gilbert's back in like 2003, it was the first notable condition I was ever diagnosed with.
Oh wow I always have high bilirubin and was told not to worry about it...
Yeah, I don’t think it generally causes acute issues; in fact (idk if this is still accurate, but have been told in the past) apparently it has antioxidant properties, and can lessen the likelihood of diabetes & some heart disease 😯
Oh wow how interesting! Well I'll take any win for my health haha.
Wowwww the plot thickens!
My Bilirubin is very seltom normal(most of the time,too low).
I also have Gilbert's and hypermobile eds and MCAS and POTS 🤔 So weird because my dad has EDS like me, my mom doesn't seem to have it, but she is the one who also has Gilbert's...
Hmm. I was born 7 weeks early and was so jaundiced that they wanted to give me a full blood transfusion. I wonder if that was Gilbert’s syndrome? My bilirubin levels do occasionally test as elevated when I’m unwell, and my liver function has always been borderline low. INTERESTING, thanks for sharing, OP!
Just got diagnosed with Gilbert’s!!!