Is it Pancreatic Insufficiency Talking?
Posted , 4 users are following.
Hello, I am a 26 years old guy, non-drinker, non-smoker, non-druggy. I cook all my meals which are usually veggies and protein. I have had problems with my guts for a long time - 4+ years. The most prevalent and constant was fat intolerance - if I eat more fats like cashew nuts, they will come out next day AND I will have cramps while doing it. Made me sweat sometimes. On and off, I also had pains, usually in gallbladder area for the last 2 years. Had multiple ultrasounds which provided nothing remarkable. The common thing was that I always thought it was either gallbladder or pancreas. Most doctors thought it is gallbladder, but it seems we reached the end of investigation for it.
Now, for the last week, I had intensifying on-and-off pain in central abdomen, upper abdomen left/right. The pain is not something that is sharp, or makes me unwell, it is a constant dull ache. It is worse after eating any foods. It is best in the morning, barely any discomfort but gets worse through the day.
I have had various pancreas and liver blood tests that were normal, also ultrasound which was okay. I am thinking of next testing my stool. Then get a CT scan? I am not worried about cancer, I am worried about chronic pancreatitis.
What are your symptoms like? I literally went to gastro doctors 2 years ago. The main crux was that I had peptic ulcers, h pylori and gastratis. I feel like they might have misdiagnosed me. One important thing - I remember taking antibiotics and my stool turned normal color. But when I stopped, they continued to be runny, sticky, etc.
I will go to a doc as soon as I get an appointment but I would like to know what tests I should force them to do to find out the root cause?
0 likes, 10 replies
Shortie79 darkknightlt
Posted
If you think you're not digesting fats then ask for the EPI fecal test. Most CTs can diagnose pancreas problems but the gold standard noninvasive test is a MRCP. Usually with chronic pancreatitis it's more than just pain and it's debilitating pain. Symptoms would be vomiting undigested foods upon all hours, constant nausea, migraines, acid reflux, itching, hair loss, radiating pain to left side either up to shoulders or down to kidneys, pain after eating so intense you're scared to eat. If you're already chronic then blood work won't show anything. Given your age, it's very unlikely unless you have a family history, cystic fibrosis or Pancreas Divisium (where you're born with two pancreatic ducts that never fused). I'm 39 and got CP from divisium and will have my pancreas removed in August. I cannot eat nuts as they contain too much fat and trigger an attack but everyone is different. The pancreas is the hardest organ to diagnose given its location. It took the doctors over a year to diagnose me and I was born with a condition. Try not to stress as it really only makes symptoms worse. Hope you feel better soon.
darkknightlt Shortie79
Posted
I don't have family history of any of this. I did test my genes with Promethease and all CFTR are good. I will try a diet of lean chicken (boiled), with raw veggies. This is resembling what happened last year, where the cure was omeprazole + 3 antibiotics, followed by diet above + lots of walking.
Shortie79 darkknightlt
Posted
Actually if you're having tummy issues and/or think it's your pancreas it's recommended to eat frozen veggies steamed. It's also recommended to eat six smaller meals rather than three larger ones as they're easier to digest. I would journal your symptoms to see if there's specific foods that trigger symptoms. You can be developing food intolerances even Celiec as it can occur at any age. Definitely, stay on a low fat/carb diet to see if that helps but you can try resting your pancreas by not eating solid foods for a couple days and drinking broth only. You'll have to slowly incorporate bland foods but it might help
darkknightlt Shortie79
Posted
I am trying to eat smaller meals indeed. Celiac is unlikely, I don't consume gluten. Made some broth - it still hurt but calmed down in half an hour.
darkknightlt Shortie79
Posted
I wanted to ask. was there elevation of body temperature when you have pain or feel a bit hot? i have upper back pain betwen shoulder blades, the pain in abdomen and feel hot. temp is 37.1 in armpit
kluesy darkknightlt
Posted
Well, the fact that you mention antibiotics makes your stool turn normal makes me think it is bacterial in nature. I haven't heard of antibiotics helping with chronic pancreatitis. You also said you have h pylori and ulcers. H pylori is a bacteria that is known to cause ulcers... so it makes sense if the antibiotics are helping.
You mention you think they misdiagnosed you-- how did they diagnose the ulcers? With a scope or just the h pylori breath test? If you have ulcers this can cause pain anywhere from the duodenum (upper right side right next to the gallbladder and pancreas) to the stomach region in the middle-middle left.
Did you have a HIDA scan done of the gallbladder? You can have a bum gallbladder and have no stones. This test can tell how well it is functioning. I did this and mine was 97%, the highest my doctor has ever seen (normal is ~30-70%). Unfortunately, after removing it I still had issues and then we started looking at CP.
CT scans will only show severe acute inflammation or more advanced CP with calcium stones and stricture of the main pancreatic duct. There is a special protocol for imaging the pancreas with a CT and if you have one ask for this. MRCP is good, however it is not great at catching early CP (I have had both). EUS is the best bet and has the best shot at diagnosing early/mild CP as it is very sensitive to imaging zones of inflammation and changes to the smaller side ducts within the pancreas.
The average person to get diagnosed with CP from the onset of symptoms is usually > 60 months. It takes this long for significant damage (scar tissue, stones, strictures) to show up on more traditional imaging techniques (e.g. CT).
Shorty is right-- you are pretty young for this and too young for PC. I would push for a EUS if you really want to be sure, and maybe HIDA to rule out your gallbladder for sure.
darkknightlt kluesy
Posted
No one is too young. Visit /r/pancreatitis and you will see plenty of people in their 20s.
I was given an endoscopy and I am pretty damn sure doctor is slightly incompetent - I told her to do fecal elastase, she said she won't because it shows inflammation in the colon. But it shows pancreas sufficiency, not actually imflammation!
I have a friend who is a doctor and she said I have a problem with producing enzymes in the pancreas - and that pain I get is from it, not stomach. I was to eat boiled meats, veggies only, limit fat and get some pineapples, kiwis, and digestive enzymes.
I had something similar last year, but damn I don't remember having pain for so long, it was rather indigestion.
kluesy darkknightlt
Posted
Sorry, I was referring to PC, not CP.
I'm confused-- did you have a colonoscopy as well? As an endoscopy doesn't tell you anything about the colon.
I ended up having to take enzymes to get my digestion under control. These, plus a strict diet (< 20 grams of fat a day), and antioxidants, and I have been almost pain free now for 9 months. Sounds like if it is CP you have an early/mild version and can maybe slow down the damage/keep the pain at bay through very strict diet, enzymes and perhaps antioxidants. There is a bunch of literature on antioxidant therapy for CP, and I suggest you read this: https://www.pancreapedia.org/reviews/micronutrient-antioxidant-therapy-for-chronic-pancreatitis-basis-and-clinical-experience
darkknightlt kluesy
Posted
What antioxidants?
kluesy darkknightlt
Posted
The ones described in the studies in the link are good examples. I take Vit C, Alpha GPC (choline), SAM-E, and Grape Seed Extract. This may not work for you, but it may be worth a shot.