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gilberts syndrome and pain

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cookicrumbles
cookicrumbles

hi,

I am 43 yrs old and just been diagnosed with GS.I have had terrible pain in the rt rib area for ages,has anyone else any experience of this? The pain comes and goes and alters in severity.My other main symptoms seem to be nausea,dizziness and anxiety.The medical books say i should be symptom free not in my case-any views welcome!

3 likes, 17 replies

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  • Guest
    Guest

    Posted

    Hi. I have been recently diagnosed and one of my friends who has gilberts has the pain under the right rib cage which apparently is due to the liver sometimes slightly swelling when its reacting to something she has eaten ect. She has had gilberts for years and suggests that eating little and often, say every 2 hrs rather than large meals that your liver cannot cope with. I have suffered with the dizzy and confusion quite severly over past 3 weeks after being ill with severe throat and chest infection...blood tests have also shown that my B12 is low end which worth having checked out as sometimes is linked with high billirubin levels.

    Regards

  • Guest
    Guest

    Posted

    I have had raised bilirubin levels on and off since I was 14yrs old (20 yrs ago). I was diagnosed with GS approx 10 yrs ago.

    I have recently been experiencing sharp pain in the right rib area for which my GP sent me for a gall bladder scan. The scan showed absolutley nothing, and as usual I am left without a diagnosis - I am thinking maybe I should see if it is attributed to the GS.......along with the unexplained abdominal pains and digestive problems where all my tests come back negative!!

    I also have reactions to prescribed drugs and do not tolerate alcohol very well at all.

  • oldtyke
    oldtyke

    Posted

    Reading about Gilberts syndrome and suffering from it + Parkinsons makes me realise the people writing about it have not experienced it .

    It can often be painful, abdominal symptoms/pain, constipation, nausea. these in themselves can make a person very depressed especially when it is unrelenting.

    I find I am better for drinking Dandelion coffee

    having a healthy diet (I am Vegetarian)

    I can be a miserable existance for many people I believe.

  • EmilyandBilly
    EmilyandBilly cookicrumbles

    Posted

    Hello there,

    i know this is an older post, but I am new to the site and very curious as to how people with GS fair over the long term.

    pain under my ribs is one of the mot severe symptoms that I experience. Has your pain gotten better over the years?

    Have you found any physical therapy that helps the pain?

    kindly,

    Emily

  • traudley
    traudley cookicrumbles

    Posted

    Hi

    I was diagnosed in 2006 with a Condition called Haemochromatosis. It is worth having your Iron levels checked, Transferritin, iron saturation and ferritin levels. For many years I went to the doctors with right rib pain, sweating, nausea feeling generally unwell and for the same amount of time they looked at my gallbladder and kidneys for stones. Have your liver function tests done, it was only when I saw the Haematologist he told me then that I had GS. It seems that the two conditions have similar symptoms so it is worth asking your GP for a Gene test. You do not have to have a complete set of genes to have Haemochromatosis you can mutate on one gene and still have the symptoms. I was told that I was a carrier of this but I have the condition. Be persistent with the GP and always ask for a second opinion.  Best of Luck, do what you can to remain as well as you can be although with fluctuating symptoms this can be difficult. Drink plenty of water, keep hydrated and keep an eye on the colour of your urine.

  • EmilyandBilly
    EmilyandBilly cookicrumbles

    Posted

    Thank you for your tips.

    When you say "keep an eye on your urine" what exactly do you mean?

     

    • traudley
      traudley EmilyandBilly

      Posted

      Hi Emily and Billy

      I had noticed that my urine was becoming rather dark and pungent. I know this condition makes you feel ropey to say the least and eating and drinking can be a problem at times.  I was told that when the urine became rather dark it is a sign of dehydration. With the pain in the right rib , nausea and feeling general unwell it is important to try and maintain fluid levels and of course stave off infection. So be vigilant over this aspect and try to keep yourself flushed through. I hope that this helps. At the end of the day we have to try and find what works for us and these are only what I try to do. There is no real guide over this and we have to do what we are able to tolerate at times.

    • becky61264
      becky61264 traudley

      Posted

      Ho I just wanted to reply. I am so glad I found this site. I was diagnosed just over 2 weeks ago after a routine blood test due to a virus I had & persistent nausea. The nausea hasn't really stopped nor has the diarrhoea. I've lost nearly a stone in weight in 3 weeks. I am having another blood test Monday something to do with conjugated & non-conjugated bilirubin. What will this show the Dr does anyone know on here? Also does anyone else have really loud stomach gurgling noises? My dr actually said to me they were blase about GS now!
    • EmilyandBilly
      EmilyandBilly becky61264

      Posted

      Becky,

      those tests will tell your doctors how much bilirubin is floating in your blood, meaning that that bilirubin is not being broken down as it should be by a particular enzyme in you liver.

      if they find a high amount it could mean that you have a condition called Gilbert's syndrome. This means that a particular enzyme in your liver does not function quite as it should.

      you have found a good group of people, we are in this together!

    • t93777
      t93777 becky61264

      Posted

      So, I was at the doctor on Friday to talk about my GI problems. He said I have IBS (Irritable Bowel Syndrome).  I've had this annoying diarrhea for five years. I've lost maybe 10 pounds in the last five years. I've had an abdominal sonogram and a colonoscopy and there is nothing wrong with me. He said I probably have Gilbert's Syndrome since my bilirubin is always high. From my research, it seems Gilbert's is nothing to worry about. My siblings and cousins have it too. LOL, my stomach does make a lot of noise! It is embarrassing at times -- it happens even when I'm not eating. I mentioned my loud stomach to my doc on Friday and he said it's just part of having gastritis.
  • traudley
    traudley cookicrumbles

    Posted

    Hi cookie

    For 13 years I went to the doctors with profuse sweating especially right rib pain, nausea, vomitting and feeling generally unwell. They kept on checking for gall and kidney stones. It was purely by chance that I had to go into hospital for a procedure and turned yellow following this. After many blood tests they looked into my Genes and found that I had a condition called " Haemochromatosis" and Gilberts Syndrome. The Haemochromatosis has similar symptoms to Gilberts but it will als make you less tolerant to alcohol. If you can get you Transferrtin levels, ferritin, iron satuaration levels checked out,This can mimic anaemia. This is down to faulty gene, may I suggest you look this up and ask your doctor to be tested for this.In brief your liver makes too much iron from the food that you eat and drink and deposits into your vital organs and joints. This can give you painful arthritic conditions, brain fog, fatigue, anxiety, depression, right rib pain, chest pain, flu like symptoms.  I hope that this helps.

    • Rondelle7
      Rondelle7 traudley

      Posted

      Hi

      Do you know which gene it is that reveals this condition?

      Thanks for the info.

  • Rondelle7
    Rondelle7 cookicrumbles

    Posted

    Hi,

    Thanks for posting about the pain in the right rib cage. I have been trying to figure out what this symptom is. I've monitored food types, had ultrasound and scans all without any explanation of the intermittent to constant pressure that can turn to pain and more fatigue problem. This could be a possible cause for all this drain and confusion since I have GS as well. Have thought I was working with the GS part of my makeup with Ca D glucarate and artichoke bud, but since reading this I have been adding ox bile when I eat fats and it seems to be keepng it to a minimum.

  • EmilyandBilly
    EmilyandBilly cookicrumbles

    Posted

    The symptom of right rob pain seems to be vey common.

    how about left rib pain?

    i am wondering if the left lobe of my liver might be inflamed?

  • brittney53308
    brittney53308 cookicrumbles

    Posted

    Hi My name is Briitney I,ve been going through same for YEARS however after much blood work and several specialist have been diagnosed with something called beta thalassemia intermedia .... worth checking out because they thought mine was gilberts syndrome for the longest .. Good Luck and I hope I was helpful to you 
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