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Could this be chronic pancreatitis?

Posted , 4 users are following.

j20256
j20256

Hi

I am now a 29y/o male. I don't drink or smoke. I have only drunk a little bit in my late teens/early 20s. The past 5 years practically nothing with the exception of the odd occasion. There is also no pacreas disease in my family. 

I have been experiencing upper abdominal pain, mild upper left back pain (slightly left og centre between shoulder blades) strange bowel movements that seem to be forever changing (dark, pale, constipated, hard, soft, bulky, floating, sinking), intermittent cloudy urine, low pressure flatulance, belching when eating and drinking and what I think is silent reflux (mucus in throat with intermittent hoarseness) for the past few year and need an opinion on some tests results I have recieved. My doctors have been hesitant to give a diagnosis. They have found that I have some bile backing up in to my stomach based on endoscopy, biopsies and HIDA scan. I have also had LFTs which are normal, celiac which is negative, autoimmune antibodies which are normal, CA19 and CEA which are normal, ultrasound, CT and MRCP which are also normal.

My tests results have come back with elevated amylase (determined to be pancreatic not salivary) which is between 7 and 10 times the upper limit of normal. I would like to know if this is too high to be considered chronic pancreatitis? I have not had any attacks that have put me in hospital. I have read that is should be moderately elevated. My lipase and fecal elastase are normal but my amylase continues to be persistenly elevated. The docotors tell me that if I had pancreatitis Lipase level would follow the amylase. Does Lipase have to be elevated to diagnose pancreatitis or is amylase on its own enough?

I also have moderately elevated IgA of unknown cause and some very strange Hep C results. The Hep C antibody results come back randomly low positive or negative. Antigen is always negative and viral load was not detected out to a year when it was first picked up 4 years ago. I have no know risk factors either. My doctors are a bit stumped as they say if I had Hep C and cleared the virus i would always test positive to antibodies. Could this be some sort of corss reactivity with another virus or autoimmune disorder?

Really need some answers. I suspect pancreatitis but am still unsure and my doctors aren't providing me with much to go on. Any input even if it is just your own experience would be much appreacited.

Thanks

0 likes, 8 replies

8 Replies

  • robin0
    robin0 j20256

    Posted

    I had strange results back on my bloods and I was told to take vitamins.  three months later I had my first attack without warning.  you feel off it for a couple of days then bang. 

    before that I had random odd pains. I have had to go on a 5 per cent diet. which helps. check your weight and diet. try a low fat pancreas diet. cut out things like cheese chocolate etc all high fat food and reduce egg Intake down. if this helps ease it then yoy could be lucky and avoid a full attack. off which you really dont want ask any one of us who have had attacks 

    • MeeMee
      MeeMee robin0

      Posted

      Hope he is one of the lucky ones that only have a few episodes and then things will go back to normal, but if it is pancreatitis he will survive. It takes a strong person to live with pancreatitis
    • robin0
      robin0 MeeMee

      Posted

      I agree if he is lucky. we have to live with it day to day and unless you have had it . they dont understand.  I was in the poo with my last attack and I didn't realise how close it came to finishing me. now I have damage to the lungs and other buts as a result of the enzymes in the blood and lungs collapse. 

      I wish the doctor had sone more at the time other than just say take vitamins. 

  • j20256
    j20256

    Posted

    Thanks. So it is possible to have elevated amylase without lipase and have chronic pancreatitis?  My doctors tell me this isn't possible. They say lipase is the more accurate test and since it is not elevated and there is nothing on imaging then I don't have CP. So confused. Why else would my amylase be so high like it is?
    • robin0
      robin0 j20256

      Posted

      you may have the first signs of acute. as we stated when you have a full blown attack you will know. the pains are officially worse than labour. 

      so being a bloke thats quite shocking.  Best thing to do is alter your diet and push for every test you can. The only problem is because this is a little researched disease and alot of doctors dont know what the signs are it is Russian roulette. 

      Ask your doctor how many people he or she has dealt with acute and chronic pancreatitis and you will soon learn like mine the answers for two pratices and 11 Doctors the answer is none. They have been learning of me etc. they only know what we all know Gallstones alcohol and high fat. 

      keep pushing and change things while you can or be like us in pain and p*ssed off with no answers and constantly in pain effecting everyday life. I would rather have my leg off than this. 

  • cathy31644
    cathy31644 j20256

    Posted

    Hiyour symptoms do sound textbook pancreatitis,I'm sorry you've been severing for so long. I have mild pancreatitis I think,I have 3 benign tumours in pancrea and get lots pain,cloudy wee,can't get spicy or fatty food and absolutely tee total.I've never been a drinker or smoker.my pain is right side,across central tummy and into back,makes me ant to cry at tines.manage with careful dietIBS drugs to calm bowel down,something for sickness,analgesia,buscopan and heat.heat is the best,back against a radiator or hot water bottle really helps.I find if I can make myself walk when pain is bad it sonetimeseases it.or perhaps its distracts me from thikig about it. Nights are the worse time,but ho water bottle helps. Know this doesn't answer your questions much but I hope not helps a bit.
  • j20256
    j20256

    Posted

    Hummm... I have never had an acute attack. My specialists are very puzzled by my results and symptoms. I'm booked for an EUS. I'm told that there is not enough evidence to support a chronic pancreatitis diagnosis. They are very puzzled as to why my amylase has been elevated for 4 months now but my lipase has remained normal. If anyone knows the answers to my questions above it would be much appreciated if you replied. Thanks.
    • oana30998
      oana30998 j20256

      Posted

      hello. my father is in thr same situation. did you find out what the problem was? thank you!

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