Could this be chronic pancreatitis?

I don’t think you have chronic pancreatitis, but exocrine pancreatic insufficiency might be part of your problem. Ask your doctor to do a fecal elastase test to rule it out. I’m sorry that you are dealing with all of these problems.

Thanks for your reply!
I have ordered a elastase test 🙂

Hello everyone,

I am in my mid 30's. I would consider myself a moderate drinker with a couple of very bad hangovers a year. I have been prediabetic since my 20's. I eat a high fat low carb diet normally.

I have always been healthy but this year my life changed. I began experiencing loose stools in December with oil in the toilet bowl. In January it got worse with various colors, yellow, brown, black. Undigested bits of food. Increased amounts of oil in the toilet bowl. I have been tested for parasites and food poisoning - all negative. At the end of January I was unable to eat because food made me gag and belch and I began having nightly symptoms. I was going to sleep and within an hour of falling asleep I would wake up in a sweat so bad my shirt was soaked with my stomach grumbling and on fire. My temperature would drop to 95 degrees - and I had to use heating pads to get my temperature back up. I had urges to evacuate all the food eaten during the day several times over night.

I have had
a colonoscopy (one polyp found)
an endoscopy (nothing found)
a CT with contrast (nothing found)
Lipase normal
Elastase normal
Full bloodpanel/workup normal
an MRCP without contrast - resulted in a slight signal dropout in the liver and pancreatic parenchyma suggestive of "mild iron deposition" which can be seen in cases of primary hemosiderosis. No lesions, no ductal dialation.
Tested for iron in blood - normal
SIBO - negative

The nightly symptoms have since gone away after two rounds of antibiotics from a tooth issue. Once the inflammation was gone I was left with stabbing pain in my left rib and just above my belly button. When there is no stabbing pain there is a feeling of having something lodged under my rib. There is always pain, sometimes it's mild aching. Other times it's stabbing, throbbing, I have felt shooting pains across my rib from the front to the back rib. Pins and needles, crawling and itching. My stool has stopped being loose and oily now four months later but it's pale, yellow/tan colored and bulky. Recently I have had bouts of constipation. The only time I do not feel these sensations is when I am exercising and the bloodflow is increased.

I am scheduled for a fecal fat test, an additional elastase test and a hydascan.

No answers as to what the "deposition" is on my liver or pancreas - I am being told I have IBS and to monitor my symptoms in journal.

Is this pancreatitis? My gastro team is declining to do further imaging on the pancreas because of the blood work and elastase being normal.
What else should I be pressing them to do? How can I convince them this isn't as simple as "IBS" and why are they ignoring my MRCP results!?

Hello @missingthebeach and welcome to Mayo Clinic Connect. Your symptoms improving as a result of your antibiotics seems to point to some type of inflammation/infection that was reduced after having taken the antibiotics.

First, you will notice that I have moved your post into an existing discussion on the same topic which you can find here:
- Could this be chronic pancreatitis?: https://connect.mayoclinic.org/discussion/could-this-be-chronic-pancreatitis/

Members @tinatoren and @susanh824 may be able to come back and share their experiences.

Have you done any research into gut health and microbiome to see if you could potentially achieve some additional improvements?

@amandajro I was thinking I likely had SIBO that caused the original symptoms of night sweats and loose oily stools and that the antibiotics likely eradicated SIBO as the test was taken in between antibiotic treatments. By the second round no more loose stools or nightly symptoms. SIBO I am reading is typically caused by an underlying condition which I am still trying to figure out.

The symptoms under my left rib coupled with previous drinking and the imaging from the MRCP are leading me to believe it's mild chronic pancreatitis in its beginning stages. I have read there are people that feel no pain at all and are in late stages where there are ducts partially blocked, and others that feel pain at a much earlier stage. It just seems like this disease in particular is so hard to nail down in early stages 🙁

I will post back when I get results back from the most recent tests. I am curious as to what others think or if anyone's seen this type of MRCP result. If it's truly iron build up then I would imagine there's some functionality of the pancreas that's being affected (blood flow, minor exocrine efficiency causing the pale stools and small bits of oil bubbles in the water?)

@tinatoren I am experiencing some similar symptoms although not to your extent, I am so sorry you're suffering this much! I was also prescribed Prilosec which I took for a month and stopped taking after it was determined that I have no ulcer (we suspected an ulcer because of where the stabbing pains were) I have been prescribed many different types of medicine that I have refrained from taking to try and keep the symptoms as clean as possible.
When I first started experiencing all of the night sweats, inability to keep food from passing through at lightning speed, oil in stools, I was experiencing the jerking motions you mention as well. I would fall asleep and be awakened by my legs, arms, head jerking. My stomach would twitch and jerk as well. I went on a boiled food diet which helped somewhat but all of these symptoms went away after being on amoxicillin for my tooth infection. I am afraid I have no answers there as to what was causing all of this (as my doctor and I thought SIBO but I tested negative mid rounds of antibiotics) but now I am dealing with the rib pain shooting, pinching, tingling, itching. Two weeks ago it was intense throbbing so intense I could cry, I was unable to focus on anything but IT. IT is always THERE. Once that subsided I am now left with this feeling of something being under my rib, this week is the best week I have yet only shooting from time to time. Exercise is the only time I do not feel this. When I increase my heart rate whether its running, or biking the feeling goes away I feel normal. I have finally been able to stabilize my weight I have lost nearly 30 pounds in three and a half months. I ate a high fat diet last week with minimal symptoms so I could take my tests. I am going back to a low fat diet, 35-45 grams of fat is most comfortable for me since this all started. Have you had any advanced imaging or other tests, blood tests etc? Wishing you well just wanted to share what's helped me so far these last few weeks.

@missingthebeach,
Wow, my symptoms are also similar to yours. Last year, under Chiropractic care for back issues I had several CT and MRI scans in which the Radiologist noted an "enlarged pancreas". My PCP ordered a pancreatic MRI to be prudent and found a mass-like area of enhancement on the head of the pancreas and enlargement. This started a whirlwind of events including an Endoscopic ultrasound with Biopsy to rule out cancer, a new diagnosis of Chronic Pancreatitis cause still unknown and an episode of acute pancreatitis after the biopsy which put me in the hospital for a few days. My labs are mostly normal except I have a positive ANA. I have the extremely low body temperature in which I simply cannot warm myself back up, constipation in spite of oral fluid increase and a healthy pancreatic diet and the pain under my left breast or just over my pancreas. I went thru a 47 day Steroid Trial and just had my follow up MRI last week. This test was supposed to confirm that I have Autoimmune Type 2 Pancreatitis...however, my GI called today and feels that there was no shrinkage to the mass, which the biopsy said was negative for cancer and the report said that my pancreatic cells have been severely reduced and replaced by the fatty cells which is a decline from the last test. This is not an indicator of body mass, because I am underweight, instead when the pancreatic cells begin to die, because the pancreas is attacking itself, the cells are replaced by "fatty deposits".
In your case, I would absolutely insist on imaging. If you have pancreatitis, you may not have any change to your labs if it's caught in the early stages. Unfortunately, we must be our own advocate because the physicians have their own agenda.
My GI is sending me to a Pancreatic Specialist because clearly something is wrong with my pancreas but we've ruled out cancer for now, autoimmune, alcohol, and obesity. He acknowledges that having Chronic Pancreatitis puts me at risk for cancer at any time and will continue to order imaging every 6 months.
Hope this helps and I wish you the best in your journey.

Results came back for second elastase test it was normal, fecal fat normal, gallbladder hida normal. I am feeling very lost as to what's causing these issues. I did a full 180 on my diet incorporating healthy grains decreasing fats and sugar. Increased fiber intake. Stools are still lighter in color than usual but aren't yellow as they were for weeks. I started using florestor this week as well. I have had a few normal stools, at least normal to how I remember them being last year before all this began.

I met with gastro this month and their diagnosis is a brain gut disconnect where I am still receiving pain signals though the infection is gone. It's a possibility that I am not dismissing entirely but I still haven't gotten a real answer on iron deposition issues over my liver and pancreas. I also noticed on another scan for a separate issue that they noted a splenule, I am reading there are some complications that can come from these and they can be mistaken for neuroendocrine tumors or vice versa.

Not entirely sure how I feel about this brain gut disconnect as my symptoms under the rib were mild in March where it was a feeling of having something under my rib which then flared into intense pain the beginning of April throbbing, stabbing in front and back of ribs then changed into itching crawling and shooting nerve pains across my rib and up my back. This went on for two weeks and now I am again back to the feeling of having something under my rib, and my back is inflamed and only on the left side mid back and shoulder blade.

I am seeing massage therapists for my back and a physical therapist too but neither have helped yet. There is a small lump in between muscles in my back that may be a knot. I will try to have it checked out by my doctor.

I had an MRI done of my spine as well that showed no tumors or anything sinister in March. I will try other gastro teams to see if there is anything they see but I am beginning to lose hope here. Not sure if I will have another flare up - we shall see. It's been a really nice quiet week I am appreciating it very much.

Is there anyone on the board that has chronic pancreatitis that can describe their symptoms? Is the pancreas visibly enlarged in scans, is the pain constant, are there flares? What causes flares? What was the definitive scan or test result that warranted the diagnosis?

I am so sorry you're going through this. Thank you for sharing your story it's so helpful to hear from others. I see we have some similar symptoms but it looks like yours came up in scans, I haven't had a definitive one. I did have a CT of the abdomen and MCRP as well and neither showed any inflammation. I did mention to my GI via a message both tests were done when I haven't eaten and while on my back. My symptoms under my rib begin after I start eating and while I am standing or sitting, laying down actually makes it better. I don't feel the foreign object under my rib when laying down as much as when I am standing. Haven't heard back from them yet.
I wish you well I hope your specialist is able to help you navigate through all this.

@missingthebeach: As you know, the enlargement/inflammation of my pancreatic head was found on several MRIs. To answer your question relating to symptoms of chronic pancreatitis...I mostly have alot of nausea which occurs sporadically, sometimes just looking at food, loss of appetite and also intermittent abdominal pain, usually when I'm feeling really stressed or if I eat what my pancreas considers an offending food. I try to follow a pancreatic diet and ordered some books on Amazon which have helped guide me, including what I shouldn't be eating. I remind myself often about these, knowing that they are most likely to cause a flare up or send me into an acute pancreatitis. It's been challenging and depressing to have to give up both food and drinks that I have always enjoyed. An example is no Dr. Peppers, sweet tea or even a glass of wine and no butter on a baked potato and no steak or birthday cake, etc. I feel like I could lick the pavement due to thirst all the time in spite of drinking only water. This condition causes severe dehydration and staying hydrated is important. And the constipation...
because the pancreas is causing a cycle relating to the water and dehydration issue. It's definitely depressing not to have any definitive answers especially when you know something is wrong. Keep doing research on your various symptoms and try to solve the puzzle. Let me know how you are doing or if I can help in any other way including just listening.