Confusion: Am I experiencing Gilbert's symptoms?

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I was diagnosed with Gilbert's maybe around the age of 20 after a blood test which showed (slightly) elevated Bilirubin. I don't think that has really affected my health and I thought nothing of it until recently; I'd always been assured that Gilbert's showed no real symptoms to speak of.

I'm a 42 y.o. m, soft but not overweight, I've never smoked but I did drink regularly throughout my late 20s and 30s. Maybe for a number of years, I drank more than I really should have and I started cutting back on drinking last year; in February I pretty much stopped drinking altogether because.... I started generally feeling sickly. Most concerning, I was feeling aching/bruising feelings around my right and left lower rib-cage and morning nausea in addition to uncomfortable bowel movements sometimes (either too hard or too soft) and fatigue in the afternoon.

I thought if I stopped drinking, I would feel better. Aaaaand I went through some light/moderate withdrawal symptoms (including some really bad anxiety) which made me think that I had been drinking too often for too long. Soon after, I had blood-work done, general check-ups and an ultrasound of my abdomen and the doctor told me that she wasn't worried about my health and that the withdrawal-related feelings would fade over time.

Well, the bruising sensations around my lower-left ribs didn't go away. I had a general checkup in September, including blood-work and swallowing a radioactive barium milkshake to look at my stomach (everything seemed normal). I had an endoscope put down my throat to take pictures of my stomach (everything looked normal). I also had a CT scan to look at my abdomen, especially at my pancreas because I began to think it was early alcohol-pancreatitis. Nothing life-threatening was found on the CT; my doctor says he doesn't think it's my pancreas (though he cannot definitely say no). So basically all of my tests keep coming-back normal.

So since all of my tests look fine, I started to wonder: could this have to do with Glibert's? I really don't know.

Now: I've been getting some really bad fatigue, some brain fog, some stomach-cramping and nausea (especially when I wake up). When I drink some alcohol, I either get a really uncomfortable stomach (cramping/twisting feelings) for a day or two after or odd bruising sensations mainly on my left side, just around the bottom of my ribs. My stools have been mixed (sometimes hard, sometimes soft). 

I'm still concerned about this being early pancreatitis but I just don't know. I haven't had anything to drink for the past 4 weeks and I'm too scared to try drinking anything again.

I'm not sure what to think at this point. Does anyone have any comments or suggestions?

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8 Replies

  • Posted

    One of the newest research areas is the study of the microbiome, or the study of the bacteria that live naturally within the intestines.  Almost all these bacteria are beneficial and they help with the digestion in many ways.

    My own problems started when all my intestinal bacteria were stripped out due to the excessive use of drugs such as penicillin.  Thus a carefully monitored change of diet can be helpful.  Note that changes can be slow, so all experiments can take a month to start to see the changes.  This is NOT a quick fix.

    In my case I stopped eating spices or herbs of any kind, and slowly everything became normal again, with my bilirubin level dropping from over 100 to an almost normal at 24.

    So NO quick fix, but I suggest a change of diet.  Regular exercise also helps, but that is of course well known.

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    • Posted

      Thanks for the reply.

      In my case, I haven't been taking antibiotics. My suspicion is that alcohol sets it off, but I am not certain about that. I am kind of scared to drink something again.

      Mainly, I'm just a bit unnerved about what it is that I am experiencing. My tests say I should be fine. Online, the symptoms seem to be so inchoate that they could be anything. I am open to making dietary changes. Specifically, what dietary changes did you make? "Herbs and spices"? Like what? How many of those were you eating in the first place?

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    • Posted

      Hi, I have the same experience. I think alcohol really helps with GS in the younger age. But after 40 no longer. The liver and pancreas are already exhausted. I'm trying Chinese medicine, a formulas for the liver and blood.

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  • Posted

    I can relate to the brain fog and fatigue when I'm not "managing" my gilberts well, and from what I read stomach problems and nausea also seem to be common complaints.  It doesn't seem to be the same for everyone, and not everyone who has gilberts seem to suffer from complaints but those who do (I seem to remember that a research referred to two thirds of people diagnosed) had similar types of complaints.

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    • Posted

      Thanks for replying.

      This experience really has been unnerving for me and the thought that drinking too much has driven me into this condition makes me really depressed, which does nothing to help the various mystery aches I get around my midsection.

      My doctor says my tests look fine and maybe there's some "functional" problem somewhere (or that was the translation, I've been living in a non-English-speaking country for a long time and I feel the language barrier has been a problem for talking to doctors; I've found that doctors here don't really seem to recognize alcohol withdrawal either for some reason).

      What are the recommendations for improving these kinds of symptoms? I've been barely drinking since February, I've been eating a balanced diet (I don't really eat a lot of greasy foods), trying to relax on my days off and so on. 

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    • Posted

      I find drinking 4-5 liters of straight water a day helps me, getting enough rest, removing preservatives from your diet, I try not to have bottled sauces on any food accept maybe soy sauce.  I don’t really have many spices but I have heard similar comments against it as Kwenda has commented.  I avoid medications as most are going to stress your liver.  I have also found that I seem to react to some vitamins/supplements including B vitamins and Valerian, there may have been other influences and this may have just been coincidental. 

       

      What I have heard can increase bilirubin:

      Alcohol and medication

      Vigorous exercise

      Fasting

      High fat/highly processed food diet

      What I have heard can lower bilirubin:

      Zinc (careful not to take to much or for too long)

      Fish oil

      Anthocyanins (found in acai berries and chokeberries)

      Gut bacteria

      Taurocholic Acid

      I have just started taking Acai berries extract, so I will have to see how it goes.  I think that diet, water intake and enough rest are the most important factors.

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    • Posted

      Alcohol seems to set-off some real discomfort for me. I'm abstaining from drinking but I wish I could find more things to do to help.

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  • Posted

    Hi.  To elaborate on my reply.

    Spicy foods or foods with added herbs seem to be my problem. It is a medical fact, noted even on the wikipedia pages that spices can cause a rise in the bilirubin levels. The components of spices and herbs are passed from the small intestine to the liver for processing and elimination.  The liver then has to 'work harder' and this can cause a problem since the liver eliminates the bilirubin from the body.  High bilirubin levels can be the cause of IBS, Irritable Bowel Syndrome.  

    In my case I now eat NO, spices or herbs. So no pepper, no curried foods, no french herbs meals and I also check the labels on foods for any food additives as well.  The diet is bland, but one gets used to this quite quickly. 

    My issues perhaps started when I took a strong dose of penecillin for some weeks, then a year later moved countries and started eating far more spices and herbs than I had previously.  

    Now I have far fewer problems since my diet has been spice and herb free for four years now.

    There is much that the researchers do not know about the bacteria in the small intestines, called now the microbiome.  You will find many new research papers from universities on this subject as only now have the doctors begun to realise the massive effects that what we eat have on our bodies.

    100 years ago or more was the saying ' You are what you eat ' and we are beginning to realise the truth in our grandmothers comments.

    A change of diet costs nothing and is easy to implement. So you have nothing to loose.  Just remember that this is a slow process, so do not expect an overnight change.

    Good luck.

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