Chronic Pancreatitis possible? Or is it something else? Struggling to find answers

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Hi everyone- like a lot of you on the forum, I am at my witts end trying to figure out what ailment and/or disease I have. To be brief, my symptoms started in August of 2014 when I started to notice upper abdominal pain and tenderness. This was on a weekend where yes, I had been consuming alcohol. I am a healthy 28 year old female and in my younger 20s I did drink more than is recommended. On the onset of symptoms, I went to a doctor who prescribed an anti-acid. I noticed over the next few months my symptoms came and went and I honestly thought nothing of it. I started noticing a change in my bowel movements in October/November (they started to become more loose, float and were more volumous). I have been into see multiple GI specialists who have run a million tests. I've had basic labs done (liver function tests, lipase/amylase, basic metabolic panel, IgA/IgG- celiac seriologies, Vitamin D/B12, Iron studies-- all came back good), an MRCP w/secretin (good), RUQ (good), EGD/EUS (good), fecal elastase > 500 (good)..... but heres he kicker.. a 9g fecal fat (normal is under 7g) with a fecal weight of ~470g (200g of stool is normal output from what I have read). To my knowledge there are only a few diseases that cause a high stool fat and CP is one of them. 

My question is.. do any of you experience high fat stools and normal imaging? The doctors seem to think this is all IBS but from what I've read IBS  does not cause high fecal fat. 

I am so desperate for answers... I wish they would just find what is causing my discomfort and abnormal stools-- even if that meant a diagnosis of CP. 

Please help if any of you can shed some light here!!!! 

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  • Posted

    pancreatitis pals on Facebook maybe another helpful source of information
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  • Posted

    Hi I'm sorry your suffering so much.getting a diagnosis can take a very long time and many tests.two years it has taken for my cp diagnosis.so perhaps you could try helping your body as much as possible with low fat diet,no alcohol,no smoking.look at pancreatitis help groups and diets etc.keep a diary look at what's triggering your symptoms,is it from a high fat diet,from alcohol,stress??

    I keep a diary and quickly found out what triggers my attacks.give it a go.

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    • Posted

      Thank you so much for the response. My symptoms are not affected by fat intake or alcohol intake and I do not smoke. My symptoms do seem to be worse with stress and anxiey. If I do have any pain it lasts for seconds to minutes and is fairly mild. I do have some gas, distention, bloating and diarrhea. From what I am reading CP is terribly painful?

      Can you tell me how you were finally diagnosed after 2 years? I just keep researching and researching and from what I have read, you have to have CP for >5-10 years before steatorrhea develops and by that time imaging should show something!!! However, I have read some people's posts and they seem to come to the MD with steatorrhea but all imaging is normal. That just doesnt make sense to me from all of the research articles I have read. All of this worries me and I feel like I'm going out of my mind sometimes. 

      Any help is so greatly apprecaited. Thanks and God Bless! 

      Any insight would be so helpful and it would be greatly appreciated. 

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    • Posted

      Hi,

      Ive been hospitalised a few times with very raised lipase,amylaise levels which shows pancreatitis. Ive had raised liver enzymes and EUS shows SOD type 2 i also have three cysts one benign two new cysts under investigation. MRI scans have shown changes in pancreas and that is how ive had my diagnosis.Initially all my tests scans came back normal,and its only when my liver became inflammed and enymes raised that EUS and biopsys taken that showed SOD type 2 and pancresitis. hope this helps.

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    • Posted

      Hi before I went on Creon( enzyme replacement) I had lots diarrhoea and fatty stool that sometimes floated.since being on Creon and a very careful low fat diet bowels a lot better and weight loss slowed down,not stopped just slower.I asked for dietian input and she has been brilliant in helping me get best dietfir me and helping myGp to see I needed Creon. Perhaps you could ask for dietitian input? Most everyone I have contact with that has pancreatitis can not take at at all, makes us bloat,in pain and altered bowel motions,and the pain is bad,so perhaps other investigations need doing before you get a diagnosis,
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    • Posted

      Thank you Cathy! I am actually a dietitian which has been a blessing and a curse. I have access to great medical doctors at the facility I work at, BUT, I also have access to unlimited reserach articles & up-to-date so I have read just about everything there is to read about CP. I will continue to pursue other options regarding a diagnosis... but there are only a few things that can cause maldigsetion/malabsorption and several of them have already been ruled out for me! I do understand that most people are in severe pain (which I am not.. only mild tenderness and pain occasionally lasting minutes-hours). However, I have read that some people dont experience that much pain but present with steatorrhea.

      I really do appreciate all of your input. Any additional knowledge is so helpful! smile I hope you are feeling okay!

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    • Posted

      hi cathy; sorry to hear; you must ahve been in some pain. 

      notsure if your panreatitis is causative or symptomtic; sometimes excess bile can affect the pancreas; just wondered if you were suffering symptoms; and what teh first symptom you had was? i was reading about Tryspin within the pancreas and trypsin inhibitors (and the enlarging of cells by taking soy products - and egg whites have trypsin inhibitors in them.. The pancreas is quite a serious issue i understand - but it all boils down to inflammation;  i currently take boswellia serratta for that; but you may have to do your homework (my bile affected my gallbladder which in turn affected my pancreas - hence the bit of reading; but i hear that it is possible to improve cells by eating the right foods/ natural remedies to target a specific issue) 

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  • Posted

    Hi Christine,

    I am in the exactly the same situation as you. Pain left side and back. Loose stools that float, undigested food bits, large volume. All tests normal! MRI, ultrasound, MRCP, bloods (FBC, liver functions, amylase/lipase) feacal elastase (I have done another last week, results should be this week)

    I saw a surgeon who was going to take my gallbladder out he then canted his mind and said it sounded like CP then refered me gastro.

    Gastro say its IBS. I had, 2 weeks ago, a endoscopy and sigmoidoscopy. They found a polyp in my lower rectum and took biopsies. I am back to see the consultant today for my results.

    Can I ask, have you lost weight? Are you able to put weight on? Mine goes down a lot but I can never manage to get it back up again sad I also tend to find the more I eat, the more comes out!!

    I have read what you had too that with high stool fat with CP the pancreas should already be 85-90% damaged (definitely show on scans)

    I am in pain everyday. Some days it's just a little. Other days it really hurts! I did have a vitamin D deficiency (now under control), I suffer with terrible pains in my shoulders and shoulder blades.

    I have read that the following can cause similar symptoms: gastric ulcer, bile salt malabsorption, bile acid reflux, GERD, coeliac disease, IBD and SOD.

    I too have had these issues since April of last year. I am 31 years old and did a bit of drinking in my twenties! I just want a diagnosis now sad I hope you manage to get one soon. Please keep us updated!

    Gem smile

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    • Posted

      Hi Gem-

      Thank you for the message back! Sorry to hear you are also going through this. I would not wish this on my worst enemy. I think the worst part for me isnt the pain-- its the anxiety of it all. I try to appear not so anxious to the doctors because then they just think I'm anxious and thats why I have these symptoms...

      Anyway, to answer your question... I have not lost any weight. I am pretty thin (right around my ideal body weight). Prior to all of this (like most women I'm sure), I was chronically trying to keep my weight down. I am actually a dietitian by career so I eat pretty healthy. However, since all of this has happened I have started to eat more carbohydrates and more food in general to avoid losing any weight but like you the more I eat the more comes out. My weight has been steady which tells me that I'm not absorbing all of my food. I am also very active... I am training for a half marathon and I do yoga, lifting, cycling, kickboxing, etc.

      As far as tests go, have you ever had an endoscopic ultrasound done? I had one last week and it came back negative. From what research I have done, a negative EUS (with no criteria met... there are 11 criteria for CP) has a >90% chance of no CP. Also, have you had a quanitified fecal fat test done-- where you ingest 100g of fat daily for 3 days and then collect all of your stool for 3 days? Also, what was your fecal elastase? Sorry for all of the questions... I am trying to wrap my mind around both of our cases!

      The only other theories I can come up with besides that I have undiagnosed CP is that

      1- I have IBS with SBBO (small bowel bacterial overgrowth) which causes deconjigation of bile acids in the terminal ileum leading to fat malabsorption

      2- this is truly IBS with a minor degree of fat malabsorption (of unknown cause)-- I found one research article that showed people with IBS and high volume stools (>200g/day) may have a slightly higher fecal fat although other websites de-bunk this theory

      3- my pancreas is secreting adequate enzymes but becoming de-activated somehow? I've read some things about gastric and duodenal PH that can affect enzyme activity

      4- its bile acid malabsorption even though my gallbladder has looked great on an RUQ ultrasound, endoscopic ultrasound (EUS) and MRCP w/secretin

      I am hoping that one of the above is correct. I have had a negative EGD (w/biopsies) and Celiac testing so both of those intestinal causes of malabsorption are ruled out.

      The one thing that makes me feel a little more re-assured that this might not be pancreatic is that I have read, fat malabsorption caused from pancreatic problems tends to me more fatty and less volumous (ie: % fat in stool is high). For my stool volume of ~470g with a fecal fat of 9g means my % is 1.9%, although the look of them would tell you otherwise. Then theres the fact that I had all normal vitamin labs (which require healthy intestine) would indicate a problem with the pancreas, not small bowel (ie: Im only not absorbing fat).

      Some other things I have thought about asking to do if everything continues to come back negative is

      1- a referral to get a direct pancreatic function test (only a few academic hosptials do these)

      2- another fecal fat test with split fat vs neutral fat (split fat would indicate proper enzyme activity because the triglycerides have been cleaved and emulsified) vs. poor absorption in the small intestine (which there would be more split fat in the stool sample)

      3- a trial of rifaximin (antibiotic) for SBBO to see if that helps

      4- a trial of pancreatic enymzes and to repeat a fecal fat to compare

      PHEW-- sorry that was a lot but my brain thinks this way because I am a dietitian and I work in healthcare.. not to mention I also have unlimited access to reserach articles and up-to-date. It really can be a curse and a blessing.

      Please keep me updated on your testing! I hope everything works out well for the both of us. I just keep praying this will all go away and/or I'll get an answer soon!

      Christine

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    • Posted

      Thank you for all that valuable information!

      My fecal elastase was 470. That was 3 months ago. I'm waiting for the results of my most recent one.

      Saw the consultant this morning. Showed her the photos of my pooh and she is still sticking with ibs! They want to try me on a lose dose antidepressant, can't remember the name and the the piece of paper is upstairs.

      I'm willing to give it a go. They are refusing to do anymore tests on me as everything is coming up normal. All my biopsies were all normal too so it's nothing to do with my stomach or colon. I asked about my gallbladder she said no and she isn't convinced about CP either.

      I queried my weight loss with her, she said iBS! I said to her you don't lose weight with Ibs she said but your just maintaining a weight now. I said to her I can't put on weight at all! Not like I used too. I used to be overweight now I'm a stick. I was 11 1/2 stone a year ago now I'm 8 1-2 - 9stone. I weighed myself on Thursday and I was 56.8 kg this morning I was 57.9kg that's in the space of 5 days (and I had my morning pooh already).

      I just don't know what to do next, I can't pay privatley for anymore scans as I don't have the money sad

      I'm back in clinic in 4 months after I've tried the pills! I hope to go they work as I'm getting so down sad

      They also blame everything on me being stressed and anxiety sad

      I really hope we can get to the bottom of it all!

      I really would like an EUS and HIDA scan. Might have to start saving! Lol!

      Gem smile

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    • Posted

      Thank you for all that valuable information!

      My fecal elastase was 470. That was 3 months ago. I'm waiting for the results of my most recent one.

      Saw the consultant this morning. Showed her the photos of my pooh and she is still sticking with ibs! They want to try me on a lose dose antidepressant, can't remember the name and the the piece of paper is upstairs.

      I'm willing to give it a go. They are refusing to do anymore tests on me as everything is coming up normal. All my biopsies were all normal too so it's nothing to do with my stomach or colon. I asked about my gallbladder she said no and she isn't convinced about CP either.

      I queried my weight loss with her, she said iBS! I said to her you don't lose weight with Ibs she said but your just maintaining a weight now. I said to her I can't put on weight at all! Not like I used too. I used to be overweight now I'm a stick. I was 11 1/2 stone a year ago now I'm 8 1-2 - 9stone. I weighed myself on Thursday and I was 56.8 kg this morning I was 57.9kg that's in the space of 5 days (and I had my morning pooh already).

      I just don't know what to do next, I can't pay privatley for anymore scans as I don't have the money sad

      I'm back in clinic in 4 months after I've tried the pills! I hope to go they work as I'm getting so down sad

      They also blame everything on me being stressed and anxiety sad

      I really hope we can get to the bottom of it all!

      I really would like an EUS and HIDA scan. Might have to start saving! Lol!

      Gem smile

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    • Posted

      Thank you for all that valuable information!

      My fecal elastase was 470. That was 3 months ago. I'm waiting for the results of my most recent one.

      Saw the consultant this morning. Showed her the photos of my pooh and she is still sticking with ibs! They want to try me on a lose dose antidepressant, can't remember the name and the the piece of paper is upstairs.

      I'm willing to give it a go. They are refusing to do anymore tests on me as everything is coming up normal. All my biopsies were all normal too so it's nothing to do with my stomach or colon. I asked about my gallbladder she said no and she isn't convinced about CP either.

      I queried my weight loss with her, she said iBS! I said to her you don't lose weight with Ibs she said but your just maintaining a weight now. I said to her I can't put on weight at all! Not like I used too. I used to be overweight now I'm a stick. I was 11 1/2 stone a year ago now I'm 8 1-2 - 9stone. I weighed myself on Thursday and I was 56.8 kg this morning I was 57.9kg that's in the space of 5 days (and I had my morning pooh already).

      I just don't know what to do next, I can't pay privatley for anymore scans as I don't have the money sad

      I'm back in clinic in 4 months after I've tried the pills! I hope to go they work as I'm getting so down sad

      They also blame everything on me being stressed and anxiety sad

      I really hope we can get to the bottom of it all!

      I really would like an EUS and HIDA scan. Might have to start saving! Lol!

      Gem smile

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    • Posted

      Hi Gem; please try (as a test) Bicarb of sodium (from teh shops) ; do not take with milk.. as this can affect kidneys.  but a quick test. Sounds to me like you do have bile issues; the bile tends to go round the body and can get over acidic; along with the stomach acid (we drink a lot of hot drinks, and eat crisps (cholesterol) gets higher which is produced in the liver. Also take anti-inflammatories and all your vits. then take Vegetablse (juice diet?) with FIBER.. psyillum husks can assist (secondary function) with bile issues.  Feed back will always be appreciatd - helps to know if it is working for others..smile
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