Pancreatic Elastase 1 test is abnormal

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My pancreatic elastase result showing a 164mcg which is abnormal.

Is it true that it's not always a diagnose of pancreatic insufficiency even if it's abdominal?

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  • Posted

    Im sorry I'm only just diagnozed so i dont know whats next now mymy CT scan gone to specialist had a liver scan that doc diagnosed me off just waiting for specialist now ? Bit scared bit denial ?

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  • Posted

    I'm sorry I don't have exact answers for you, From the little I know of this test it could mean several things. When do you get to speak with your doc for more answers? I Know it's a tough time.

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    • Posted

      Im waiting for the specialist to send for me ,ive had CT scan he said once he had the results he would send for me , however imim having a endoscopy next week so he might be waiting for that ... i dont know if this has anything to do with the condition but i am so tired all the time x

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    • Posted

      It's really awful for anyone waiting on results. From my experience, the lack of energy is definitely from my chronic pancreatitis. No energy, no appetite.

      I'm sure the doctor is waiting on everything to get back to him before he sees you.

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    • Posted

      Yes then hopefully I'll get to understand more in depth what im up against , i dont feel in to much pain I've been off work to have the test but hoping to go back to work next week !

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    • Posted

      Ive been going to the doctors for 10 year with gastro problems had a endoscopy , barrets est , treated for IBS

      VeryVery sick painfulpainful episodes i stopped earing sausage bacon .. fat cut down , about 3 week ago i was bad again went to doc did blood tests my liver enylaze where high had a liver scan found a blockage diagnosec withwith chronic pancreatitis , i personaly think ive been having episodes of acute and misdiagnosed think ive had gallstones

      So seen specialist had CT scan waiting tp go back !

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    • Posted

      yes you're right, so they say. Did this whole thing start with you having acute pancreatitis? Horrible abdominal pain and nausea that sent you to the ER? Did you have gallstones or gall bladder issues? Have you had elevated lipase and/or amalyse levels? Do or did you drink a lot of alcohol? Don't even worry about being judged. I would't do that. I'm just trying to get a history. I spent years in and out of hospitals. One thing I can tell you is that there are many GI doctors, but I was surprised to find out over the years, how many don't really understand the pancreas itself. It was only after I got sent to a famous hospital (I don't know if I can say names on here) It's in Maryland.. anyway, the GI doctor who had first seen me and spent 2 years of me in and out of the hospital (hysterically begging to be put in a coma or be beheaded quickly- yeah that much pain from pancreatitis) He referred me to a pancreas specialist. At this hospital they have a pancreas team. I had a horridly painful procedure called a sphincterotomy. They also put stents in my ducts to widen them. They took good care of me though. On a pain pump and brought my daily trips to the ER to an end. Over the years I have lost energy and was barely 100 lbs to start, but can't eat anything without being full after a bite. I can't work and it's just a crappy ordeal, but compared to before, at least I don't live in a hospital (or ask to be killed in the ER!!) I don't know if any of this depressing story sounds familiar, but hope it gave you some info. Are you in the states?

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    • Posted

      yuk! I am so sorry. I completely understand, and it sounds like you have had a lot of acute attacks. I don't know how you did it! Read my reply to Marcus. I meant to write the whole story to you too,

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    • Posted

      It is kinda strange when I had severe abdominal pain with gas in my abdomen without a diagnosis back in December of 2017 then I had lost weight in early 2018 with gastroespohagal reflux disease. Then I started get bloating and floating stools regardless of what I eat. Like a salad, noodles etc and still bloated with floating stools.

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    • Posted

      Is that still going on? Are they greasy and like yellow colored? With the bloating, do you feel very gassy?

      Did they diagnosis you ever with anything besides reflux?

      Did you have blood work done during any of your painful bouts of abdominal pain? Did you go to the hospital when you had the bad pains? If you did, they would have for sure checked your blood. Did they ever say you had acute pancreatitis? I'm just wondering how the doctors went from reflux to doing pancreas testing? I know it's hard to explain everything on here. I don't want you to be inundated with questions. You don't have to say exactly where you live, I'm just wondering if you are in the states.

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    • Posted

      Sure, it would be great to chat. I asked my daughter about using her PS4 to chat. She said she'd get me set up to do that.

      I'm fine to give you my cell and email. I'm really bad with everything tech! If you have any other ideas let me know.

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    • Posted

      Had plentyplenty of bloods done , my pain was unreal i was being sick and the runs ,it would settle about 3 days later I'd go to the doctors He would up my amrprozale say IBS or food poisoning thisthis has been goinv on abut 10 year Then this I am so angry , frustrsted and scared tbh

      I dont sleep i very well i have insommnia i have gained weightweight and OhOh i now have a underactive thyroid you can imagine how fed up i am ,,

      Anyhow hopefullyhopefully get app soon x

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    • Posted

      How totally frustrating!! I wish you could have gone in when you were in that horrible pain, because I'm guessing those were acute attacks in which your pancreas was inflamed. If you are in the hospital during those, it would show up in the blood work that your pancreas was inflamed and during those times, you can eat or drink nothing. Not even water. Everything is just through IV. They can give you fluids, pain and nausea meds. It can be dangerous to not go in during an attack, if that is what it was. It really sounds like it. And because you waited til the pain was gone, the pancreas levels went down so getting a blood test after would not let them know the problem. Please try to go in if you have severe pain like that again. I really want you to get everything fixed! I feel awful you suffered so badly. Do you live in the U.S.?

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    • Posted

      Ok, I don't know what that is but I can ask my daughter. I will have to go use it in her room, so I won't be able to answer or even see if you wrote while she's in school or sleeping etc... so if you think of anything else where I can talk at any time, please let me know. I know there are texting apps like whatsup etc.. if you could or don't mind, please suggest one and we can do that. I hope you're feeling well today.

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    • Posted

      P.S. 10 years without a correct diagnosis is really awful! I'm mad for you. It sounds like you have had no proper care this whole time, you must scared, I can imagine. Are you seeing a GI doctor? The more I think about your situation, the more annoyed I get. Always remember this - YOU know your body, and how you feel. You have to be your own advocate and push them. Reflux and random food poisoning for a decade?! Seems nobody is listening to you. I wish you lived near me, I'd drag you to the hospital myself and demand answers!

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    • Posted

      wow! I know that test was for pancreas sufficiancy, but is that your straight diagnosis? Does that mean you don't have pancreatitis? I'm happy you got answers. I am confused about the difference and would very much like to know what medicine. I have never been told any meds besides enzymes would help. I wonder if it would help me. I'm really happy you have answers and treatment and hope to talk to you about it if you would.

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    • Posted

      Not sure if its pancreatitis and I think I have to wait for a call before April 10th appointment. I hope I get a diagnosis and letting the clinic know that to add my diagnosis in my records.

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    • Posted

      Its this waiting i cant stand ,im tempted to ring the specialist reception , however ,i bet hes waiting untill i have my endoscopy

      Hope you find out soon ,im hoping that its managable .i need to work

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    • Posted

      Aww thank you that is so kind . I had endoscopy yesterday taken 2 biopsies those results go to specialisy who will then have me back in and hopefully some answers . Thank you x

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    • Posted

      I too believe that ive been having acute attacks i live alone didnt call an ambulance o just stayed with it untill i was fit enoughenough to see the doc and go back to work ,

      Again no scan justjust IBS !

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