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New to Gilbert's and this site

Posted , 21 users are following.

EmilyandBilly
EmilyandBilly

Hello there group,

I am very excited to find you all! For amore than 4 years now I have been working with many different doctors and specialists to try to find the root of my many symptoms, and I have recently received some lab work that suggests that I have Gilbert's Syndrome.

And it seems that all the puzzle peices fit!

My symptoms all seem to match up:

-IBS

-cold hands and feet

-Yellow eyes and skin

-Dark urine

I am particularily excited to find this group, as I am in univeristy for Physical Therapy and I have been assigned a project from my professor to join an online support group. I would love to join this group and become part of an active discussion about this little known condition.

I would love to hear your personal stories!

How did you all come to find your diagnosis of Gilbert's Syndrome?

Kindly,

Emily

1 like, 35 replies

35 Replies

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  • Galahad
    Galahad EmilyandBilly

    Posted

    Hi Emily,

    I got my diagnosis about 16 years ago, when I was about 29 years old. I'd been getting nausea, upper abdominal pain (especially in the liver area), yellow eyes and skin, fatigue, dizzyness, brain-fog, pale stools, loss of appetite amongst other things. They gave me every test under the sun, but all they could ever find was elevated bilirubin.

    What has made things worse for me has been that every doctor or specialist that I've seen has told me that Gilbert's Syndrome has NO symptoms. That has led me to worry about what else must be causing the problems I've been having - leading to health anxiety on my part, which has in turn become generalised anxiety disorder, with panic attacks (thank "Doctor Google" for that), and chronic depression.

    Earlier this year, I spoke to a student doctor, who trained at the medical university in Gdansk, Poland. He told me categorically, that Gilbert's Syndrome CAN cause symptoms, and that there are 8 known mutations of GS (although there are no doubt many hundreds of unknown ones). Not all mutations cause symptoms. To date, he is the only medical professional who has said that GS can have symptoms with it. 

    Even the researchers only seem focused on the bilirubin itself - NOT the faults within the liver that cause the bilirubin buildup. However, GS researchers seem to be looking for a way to harness the positive effects of GS (such as reduced chance of heart disease due to the antioxidative effects of having bilirubin in your blood), and do not seem to care about finding relief for symptomatic GS sufferers.

    I still suffer with my symptoms and I find it very debilitating, with no apparent chance of help from the medical community. It's worse when I'm stressed, get very hungry, get sick for some other reason or if I'm short on sleep.

    It's incredibly frustrating. I'd recommend the Facebook group, "Life with Gilbert's Syndrome" if you want more info and interaction from people with the same problem.

    Hope that we all get some answers and relief eventually! :0)

    • moira36765
      moira36765 Galahad

      Posted

      3 weeks ago I saw 2 doctors at Women's College Hospital in Toronto and they told me that the cause of all my symptoms (extreme fatigue, IBS, drug intolerance etc) was Gilbert's. Yes, there are different phenotypes and some are severe.
    • Galahad
      Galahad moira36765

      Posted

      That's good to know, Moira - you're the only other person I've encountered who's had such luck with doctors. Did they have any suggestions as to what to do about your symptoms?
    • moira36765
      moira36765 Galahad

      Posted

      smile their sugestions were: Avoid, avoid, avoid and if in doubt avoid as well (drugs, trigger foods, pesticides, stress and so on) they said that my body cannot detoxify properly. Also, they told me to keep doing my rotation diet, so I don't develop more food sensitivities to my current safe foods, also to rotate de few supplements that I can still tolerate so I don't develop sensitivities to them.
    • Galahad
      Galahad moira36765

      Posted

      Many thanks!  smile  

      Is developing sensitivities to food and supplements something that all GS sufferers have a problem with? Or was that something particular to yourself?

    • moira36765
      moira36765 Galahad

      Posted

      These 2 doctors said that all my symptoms were caused by GS includying food sensitivities-IBS is mostly about food sensitivities. They didn't say food allergies, I sometimes use the words interchangeably.  Since different people have different phenotypes I guess some GS patients develop foods/supplement sensitivities and others don't. People with some phenotypes don't have any symptoms at all and they are pretty healthy (lucky ones!) but others...
    • EmilyandBilly
      EmilyandBilly moira36765

      Posted

      moria,

      This does make sense. I am actually really interested in the technicalities of the phenotype data. Do you know of any research reports I could look into?

  • Lydso
    Lydso EmilyandBilly

    Posted

    Hi Emily,

    I found out purely by accident. I had a follow up blood test after having glandular fever. A receptionist revealed an abnormal liver function when I phoned for the results.

    I have little doubt that my doctor would have probably not even told me had it not been for the receptionist giving it away, because she went to great lengths to assure me is was a completely benign condition.

    Before I was diagnosed I got along ok but always felt something wasn't quite right, I often felt and sounded drowsy and slow whereas friends seemed perky. I suffer several of the common symptoms. Tiredness, fluctuating fatigue. Yellow eyes, skin, brain fog, alcohol intolerance. I did so before Gladular Fever and have done since, so finding people shared these symptoms was reassuring.

    I have always had very cold hands, that turn purple and blotchy pink extremely easily. It's embarrassing sometimes when out shopping because I feel like a Walking Dead! You are the first person I have seen mention this in relation to GS. I can live almost fine with all these issues as long as I look after myself and don't drink much alcohol, but it is no way totally benign.

    • EmilyandBilly
      EmilyandBilly Lydso

      Posted

      Thank you for your reply.

      I am actually waiting in the doctors office right now to talk about the results from the lab work...fingers crossed that I have an open minded doctor!

    • Lydso
      Lydso EmilyandBilly

      Posted

      Hey, I'd be interested to know what your doctor generally had to say about that, if it's not too private.
    • EmilyandBilly
      EmilyandBilly Lydso

      Posted

      Lydso,

      No, it is not too private, I am happy to share.

      So I will be the first to say that I was totally suprised by my doctors responce. She was actaully great!

      I am used to doctors not being so curious and willing to collaborate, but she was absolutely wonderful about it.

      I had brought in a few research reports that I found on the Internet, and she actaully took the time to read through the research and she even said, "I always learn from my patients".

      wow!

      She listened very closely to the symptoms that I described from the past few years and she agreed that we should begin treatment for this condition in hopes that it could relieve my symptoms!

      Her advice for treatment is dietary changes, and Milk Thistle.

      She is doing some research on Zinc Supliments and the light therapy.

      i have not felt this hopeful in a long long time.

      How are you doing with your symptoms, have you found dietary changes or Milk Thistle to help?

    • Lydso
      Lydso EmilyandBilly

      Posted

      That's good news. Having at least some acknowledgment of symptoms is a huge step in the right direction and can feel like a get weight off of the mind. I feel bad for people who go for several tests only to be told "You have GS, but that's not the cause of your symptoms". That feels to me like a waste of time and resources, not to mention a persons sanity. I know they need to eliminate all other potential causes, but once hose are ruled out it heaps more stress on people to say you have this thing called GS but it is benign, and what you keep describing is probably in your head!

      I have not really gone through any radical dietry changes, but do eat a more balanced and healthier diet than I used to. A healthy lifestyle, exercise (with rest days) and practicing all of the general advice for a healthy liver is the best way I manage personally. I still eat what I like and drink when I like but I limit it or expect the consequences.  I have recently started having a nutribullet for breakfast every morning. The nutritional boost seems to help, it certainly can't be doing me any futher harm.

      I have never tried Milk Thistle, I have heard it helps some people while others say it doesn't.

      My main symptoms are permanently yellow tint to the whites of my eyes, this never seems to completely subside. Slight yellow hue to my skin. Tiredness, morning weakness, difficulty getting going (I'm not just lazy lol!). Brain fog (losing concentration or thread of conversation), Random bouts of extreme afternoon drowsiness (quite rare now). Terrible headaches if drinking alcohol, sometimes same day and morning after would often be a total write off even with very moderate consumption. I don't drink much at all now unless there is a specific occassion to - and time to recover!

    • stephfullam
      stephfullam Lydso

      Posted

      I am new to this site! Today I was diagnosed with Gilbert's Syndrome. I have been going to doctors for several years trying to find the link between my lethargy, my extremely frigid hands and feet, my cloudy eyes and state of mind. My primary care physician kept saying that I must be suffering from anxiety. (Which I totally was!) but FINALLY after looking at several blood work panels over the last

      4 years he noticed a trend with my bilirubin levels. They were ALWAYS out of range, with no other levels of toxicity in my body related to autoimmune disorders. Today I got a diagnosis, and it seems, after reading several of other posts on this forum, I am not the only one who can say that there are definitely symptoms associated with the syndrome.

  • EmilyandBilly
    EmilyandBilly

    Posted

    galahad,

    i domt know know if developing food allergies has anything to do with GS. It might just be funny Ol' me. But I am interested to hear if anyone else has developed allergies?

    • Galahad
      Galahad EmilyandBilly

      Posted

      Thanks Emily. I've developed sensitivity to lactose fairly recently. The doctor told me that it's genetic and that I've only ever had 50% ability to digest lactose, but it never caused me any problems until this last year.
    • EmilyandBilly
      EmilyandBilly Galahad

      Posted

      So this makes me wonder about the technicalities of our "gene expression" of food allergies and other conditions. We know that based on diet, stress, and other lifestyle factors, that the expression of our genes actaully change. So sure you have always had the genes for a lactose allergy, but perhaps there are circumstances that can cause genetic expression to change in a way that actually manifests into the symptoms of that allergy.

      Does anyone know anymore about gene expression? I think that could be interesting to look into in terms of how the gene for GS becomes expressed.

      What do you think?

    • joseph69671
      joseph69671 EmilyandBilly

      Posted

      I have GS. been sick for 15 years. I'm allergic or sensitive to pretty much everything (corn, wheat, tomatoes, and pretty much all grains and grass and trees. I constantly feel like crap and have panic attacks. I can barley eat anything. I have dark urine and stomach pain on the right side. fatigue shortness of breath palpitations etc.... I've been to 20 drs. have had so many tests done and they all say "you're fine it's not because of GS."

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