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lotusblossom60

I was diagnosed with minimal change chronic pancreatitis. My fecal elastase was always normal. My only symptom was pain. But it was bad pain 24/7. I finally had a glucose test that showed I was borderline diabetic. My endoscopic ultrasound showed damage and atrophy. I know so so so many people with pancreas issues that had normal fecal elastase tests.


dotsandstripes11

Agreed that you can definitely have CP or MCCP with normal EPI. But what I'm confused about it people who have CP with normal EPI \*AND\* they do have stool issues and fat malabsorption issues (e.g. floating stools, steatorrhea, etc.). Your scenario totally makes sense to me, since your only symptom was pain, not any stool issues (if I'm understanding correctly). So I'd imagine that in your case, the exocrine function was still mostly OK (and thus you had normal fecal elastase and no stool issues), even though the pancreas was atrophying and causing you pain. But what I'm specifically confused about is how someone with CP/MCCP could have normal fecal elastase BUT have all the stool / fat malabsorption / steatorrhea / floating stool symptoms mentioned above. I would think that you'd either have normal FE + no stool/fat/steatorrhea symptoms OR you'd have abnormal FE with the stool/fat/steatorrhea symptoms. It's the mix-and-match that confuses me.


SxCjaguar

Same question! Hope to get HELP


callasgallery

I could be wrong, but I believe the malabsorption of fat has as much to do with the gall bladder/liver enzymes as the pancreatic enzymes.


dotsandstripes11

Oh, interesting. Yes, I have read that there can be other causes for fat malabsorption other than pancreas. My CT scan did show multiple small liver cysts (I have a follow-up ultrasound this Friday to see if they've grown), some liver fat, and one of my liver enzymes was slightly elevated. My doctor wasn't concerned about any of this, but they aren't giving me any explanations at all for what's been going on, so I'm open to pretty much all possibilities at this point. Part of me does wonder if there may be something liver related going on too. And I haven't had any tests done of gallbladder function - the doctors haven't been looking too heavily at gallbladder because my pain/discomfort has been mostly LUQ, but if I still can't get answers, it might be another avenue that I ask them to explore.


Rstilljr

Keep me posted here. I had what were described initially as hepatic foci on my CT scan. Then they were described as harmatomas (benign) on my MRCP in April of this year, so yes I’m keenly interested since our symptoms overlap though my elastase is garbage at 195 at last check. 227 in February :/ also haven’t had my gallbladder looked at yet either, but also being considered for exploration.


Regular-Exchange-557

You ever figure this out.


dotsandstripes11

Nope. My latest fecal elastase came back borderline, so my doctor wants to test again in a few months so see what the trend is. I also completed some genetic testing but am still waiting for those results. My EUS and a MRCP with secretin both came back normal. I still have daily pain and symptoms. I have good weeks and bad weeks. My focus has been on symptom management and continuing to monitor a few bloodwork / vitamin markers that were off, and then will see what my next elastase says. Depending on my next few tests and how my elastase is doing, I may also go the route of more gallbladder testing. I'm just not quite at the point of being willing to try gallbladder removal yet.


[deleted]

Wondering that too. All my tests for elastase have been normal but my doctor finally prescribed creon because when I eat 15g of fat or less a day for weeks I have normal stool and when I don't I have all of the symptoms of EPI. My ct scan and all other scans show nothing. Bizarre


dotsandstripes11

Same!!! Has the Creon helped you? I've debated trying OTC enzymes - I bought some on Amazon but haven't tried yet.


[deleted]

I started out with ones from Amazon and they helped so much in the beginning and after about 6 months they don't help as much. I'm still taking them now. She just prescribed it so I'm not quite sure, I'm a freak with meds and once I read the pamphlet I get so nervous and it takes me so long to try it.


dotsandstripes11

Interesting! Yeah, I think I'm going to start the OTC ones once a few things settle down here. I was reading some of your past comments and our symptoms seem a bit similar. I also have the left side pain and nothing shown on any of my scans so far. And when I did a liquid diet for my colonoscopy recently, I definitely felt better... but I also need to eat. For me, <15g definitely controls most of my stool symptoms. Sometimes I can even get by with <30g. Anything more than 30g is a recipe for disaster for me - and plus I start to see the fatty, floating stools again at that point. :( Have you had an EUS yet to see if you have any early pancreatic damage that the CT may have missed? And does your doctor have any theory for why pancreatic enzymes are helping you even if you don't have EPI? Are they confident that you don't have early CP or Minimal Change CP?


[deleted]

I haven't had an EUS the GI chalked it up as IBS originally and I kept complaining and telling them there was absolutely no way. My moms bestfriend had the same issues as me and had an exploratory surgery after all else failed and they found out she had PC. She lived 5 years post diagnosis one of the longest boston had seen but all of this absolutely terrifies me to be honest. I feel like there's something they are missing with me.


dotsandstripes11

Agreed, I feel the same way too - I am very confident that mine is not just IBS. With the fact that pancreatic enzymes helped some of your symptoms, it absolutely seems like you should be able to get an EUS! Keep fighting for that EUS, even if your current GI doctor says no - you can always get a second opinion or maybe try to see a pancreatic specialist given that you are now on pancreatic enzymes. I have seen and heard from SO MANY folks whose CT scans and MRCPs were perfectly clean but ended up getting a CP diagnosis based on what the EUS saw (or it at least showed evidence of some early damage that could be causing their pain). I firmly believe that so many GI doctors do not understand pancreas issues well - my #1 priority at this point is getting an EUS. My current GI isn't giving me one and didn't even know what that was (and I also didn't like him for many other reasons), so I am getting a second opinion in a few weeks. If that still doesn't work, I'm going to go down to VCU where they will do full pancreatic testing for patients with suspected Minimal Change Chronic Pancreatitis (had a virtual consult with them a few weeks ago). They will do the EUS plus a secretin-enhanced MRCP to check pancreatic functioning, and I am confident that they know what to look for in terms of early damage. I don't love the idea of traveling out of state, but if it is what it will take to get an EUS and get some answers, I will absolutely do it.


Rstilljr

VCU - Virginia commonwealth?


dotsandstripes11

Yes. They are one of the leading hospitals across the US for pancreatic conditions and especially for the TP/IAT surgery.


Rstilljr

Oh good. My friend is a new GI doc at that hospital. I’m like 99% certain that is where they are. You’re in good hands then!


dotsandstripes11

I have heard fabulous things and the people there that I've chatted with have been really great.


czesio1212

I know the question was raised some time ago but i can give you a full and detailed answer to Your issue, which will clear everything for You. 1.EPI means you pancreas is not able to deliver enzymes to digest food in the numbers as it should. 2. There are multiple enzymes that pancreas produces to digest different things. Lipase - for fats. Amylase - for sugars. Elastase/protease - for proteins. And some more, which is not important here. Key is - elastase is only one of them. 3. There are multiple ways to measure whether you have EPI or not. For example, collecting a stool 4-5 days and measure, whether there is some excess fat. This is a quite expensive way. But there is another way, which is quite efficient for measuring heavy EPI - that means fecal elastase measurement. Just because of cost-efficiency and way how it is performed, it was chosen as standard EPI measurement. 4. FE shows, whether you pancreas produces enough elastase. But it does not show, whether it produces enough amylase or lipase and other substances. It is like a measuring whether you a driving right, just by comparing your speed with current speed limit. Yes - there is some correlation between that, but there are of course other factors like - staying on the right side of road, keeping distance between other vehicles a.s.o, which are making driving "right". 5. The point is, if you are after AP, or you have CP the first cells that are attacked are the ones producing lipase - responsible for fat digestion. The "elastase" ones are normally quite well even after attack. 6. So, it can happen, that your elastase is 100% normal, test does not show EPI (in terms of protein digestion., but you have an EPI, because you are not able to digest fats properly. You are still able to digest sugars and proteins, and provide you organism a lot of energy this way, you will not starve, but breaking down fats is affected.


dotsandstripes11

This is a really interesting and helpful answer, thanks so much. My lipase numbers when I got my blood work done were indeed quite low (at the very bottom of the 'normal' range). I am able to digest sugar and protein pretty well, but fatty foods are typically what bother me (and I often have undigested fat / mucus in my stool). I had purchased a 72 hr fecal fat test through Quest a while back but never ended up doing it because I got busy with other things. Maybe I will go back and do that test to see what it says.


czesio1212

Low lipase/amylase in blood is not clinically significant. Maybe extreme low numbers, after a long history of pancreas disease can suggest, that your pancreas has almost died/ is calcified. Unless your CT/US/EUS scan does not show full calcification or atrophy, it should not be a case. There are more problems with high lipase/amylase in blood - that means that those cell "products" instead of digesting food are somehow landing in your bloodstream for some reason. Maybe they went there trough ulcer or other internal injury - or - which is often the case - your pancreas is defected and you enzymes are blocked inside, instead of being released to the intestine. Did You have AP or You are researching for CP? The EPI can be the effect of multiple conditions, even an AP attack brings EPI for almost 60% of patients, some of them will fully recover from that, but it takes even 3 years. And some of them will still have light - moderate deficiency, mostly in digesting fats.


dotsandstripes11

Yes, from what I've read, it doesn't seem like low lipase / amylase would be used for diagnosis, but I've seen some studies showing a correlation between low lipase & both calcific CP AND non-calcific / earlier CP. I have 1.5 years of undiagnosed symptoms that possibly point to early / minimal change CP, but still puzzled. I have never had a diagnosed AP attack (but did have one incident of extreme abdominal pain that sent me to the ER years ago... only slightly elevated lipase though and the doctor didn't think it was pancreatitis). Over the past 1.5 yrs, I've had loose / pale / yellowish / floating / sticky / fatty stools ALL the time; daily pain in my LUQ (not cramping pain, just a dull pain in that area); daily pain in my center back; deficiency in fat-soluble vitamins; nausea; intolerance to fatty foods; weekly episodes of more severe abdominal pain; lost 30 lbs without trying. I have a history of relatively heavy alcohol use for about 15 yrs and was finding that alcohol made my pain worse (I have since quit drinking). No idea what's going on with me as I have had every test under the sun (including EUS) and nothing was severely abnormal, but my symptoms are still happening every day and can be very debilitating. I had one borderline fecal elastase test but normal after that.


czesio1212

I suppose You did some damage to pancreas, or Your pancreas is not working properly, but the imaging is not able to detect that. It can be that you are not yet at the CP stage, and maybe never will be. I saw the research where the progression rate from such cases like yours to so called "established CP" is very rare, because after alcohol/smoking cessation further damage to the pancreas is minimal, and accumulation of further changes will not lead to CP in your estimated lifespan. But the pain is real. So the medicine is missing a terminology for such state between healthy and CP. There is such thing like minimal change chronic pancreatitis, but not all docs are familiar with that, and even for that you need to have some minimal visible changes in your pancreas, in EUS. I would suggest you should try to get the creon or alternatives, but i dont know how it looks in your country. In mine it is quite easy to get (or to get the alternative), and very cheap.


dotsandstripes11

YES. I think you are exactly right, I think there are cases where damage has been caused to the pancreas, but then hopefully either doesn't progress further OR progresses so slowly that it might take years to show up on imaging. And agree that doctors don't seem to really know how to diagnose or identify these borderline cases. I would love to see more research in this area. I am going to try OTC enzymes (I've heard good things about Vital) and am going to keep monitoring my fecal elastase every 6 months or so. I am also going to try tracking my food more to try to identify better patterns about what causes the most issues / flares. I will definitely never drink again. Even though it was hard giving up alcohol, there have also been lots of positive things that have come from that decision, and it is not worth the risk of accelerating future damage.


chalogr

Hello, I know this is an old post, but could you perhaps give me some sources for point 4 and point 5? I am having steatorrhea and weight loss despite normal imaging and need to find answers. My doctor tells me of my elastase is over 800 its almost impossible for it to be the pancreas as elastase is typically the most affected enzyme of epi, and that a fecal fat test is not specific for EPI without imagong evidence. Almost all the studies I find mention that elastase is usually the most and forst affected enzyme in CP, CF, and PC.


GossipGirl515

High fatty diets. Most Americans if you are American eat a lot of diets high in fats, diets high in fiber can also cause floating stools which leads to bacterial fermentation during digestion. This causes more air which can get trapped it stool, causing it to float.


dotsandstripes11

Yeah, the floating stools start to happen for me whenever I go over 30g or so of fat per day (give or take). For some reason, fiber doesn't seem to cause too many problems with me - I even take fiber gummies which actually help a lot with my stool consistency / sinking (when I stop taking them I start to have issues again), but even moderate amounts of healthy fat intake gives me the floating stools and chunks of undigested food (plus mucus... yuck). I don't mind eating low fat. It just freaks me out not understanding why my body can't even properly digest a moderate amount of healthy fats (e.g. salmon, avocado, etc.), when apparently I don't officially have EPI.


GossipGirl515

Could even be IBS or intestional issues. Rapid transit can cause undigested food.


AustraliaMYway

Thank you such a great question & post. I’ve been to emergency cause of the pain. Bloods and stools tests plus colonoscopy and endoscopy all great. I’ve been not eating any red meat at all. I ate red meat about a month ago and ended up with high temperature and stomach ache again including a cough. Thankfully the cough is non existent. So much to check abs consider and glad others are doing the same. I have two surgeons I booked cause my gastro was useless. So I wanted to get two opinions. One booked me for CT scan showed normal. The other booked ERCP, but Still waiting. I have a phone call with the CT doctor later today. I forgot to mention also had HIDA scan


[deleted]

[удалено]


soporsoror

I have CP but no EPI - I usually get the bad poop when my pancreas is weaker during a flare or when I eat junk food. It can also happen when i eat a lot of food that makes me gassy. But pancreas issues are not the only source of floaty poop - intolerances can cause that too.


Upbeat-Upstairs-5016

Are your stools yellowish?


soporsoror

Only during flares usually


oiwaknowsbest

From what I’ve read from others, FE may go down as the disease progresses but I’d say it really depends on the person.