Hi Sesser, I have similar situation. Except, I had never elevated lipase or amylase. I have still pain and I am loosing my weight 13 kg per year. Did you have direct pancereatic function test after secretin stimulation, to measure bicarbonate concentration? I had also 3 EUS, with tottaly negative results, done by 3 different endosongraphers. Do you lost your weight? My present situation is: I am waiting for appointment to Geneva university hospital in Switzerland - Europe. to make diagnosing. I was tested for parasites from stool and for many infections from blood, I am waiting for results. I have also tests for oncomarkers - negative. I am waiting for one more calprotektin. I have heard also about one indirect test for pancreatis exocrinne insuficiency 13c-mixed trygliceride brath test, there is less sensitivity and specificity compare to direct test, but maybe we should try to do this test. I am also waiting for results for measurement fat from stool. Did you thing about the sprinther of Oddi dysfunction (stenosis of Papilla of Vater...) or maybe Gastropahresis or maybe SIBO ( small intestine bacterial overgrowth)? For small intestinal bacterial overgrowth thaere is also lactulose breath test and treatment is with anctibiotic Rifaximin. For Sprinther of Oddi dysfunction, there is manometry test. I am living in Europe, but I have heard about one physician in the USA, he is very good for pancreas diseases: http://m.youtube.com/watch?v=qxIk1nUtxVU . And also maybe you can do fibroscan of liver and PET/CT. That are my some advices. I don' t know also what to do. Oh, and I have also colonoscopies, gastrofibroscopies, CT of abdomen, MRCP, capsule endoscopies.

Thank for your reply. What are your pains like exactly? Ive had an MRCP too, two actually. I am going to the secretion w MRCP and EUS but the pharma company is out of the drug that stimulates it so we have to wait. Hoping its back on market in spring, this is suppose to be the best test. I did a FF test, it was clear. Usually if it has a high level of fat the pancreas is pretty far gone so it would show on an EUS too. SOD is usually right sided pain and with elevation in liver enzymes, so thats not me either.

I am getting tested for SIBO in a few wks, does that cause pain upper left? I think the EUS would rule out stomach inflammation too.

Hi Sesser,

my pain is concetrated in the midle and in left side of the upper abdomen. Sometimes also right side. I have also pain under my left shoulder, sometmes little bit down. The pain is a sticky, like touching with knife, deep pain and my skin is itchy ( very hypersensitive). My stools were foul smelling. I try to take rifaximin, it bring me some one relief. My skin is less hypersensitive, but is still itchy. And stools are not four smelling. In the nights I don't feel pain. But when I woke up, it starts. When I ate breakfast or some another food, few minutes after, the pain is worser. Also when I am very hungry, The pain is worser. Sometimes I am nauseous. Also when I feel stress, the pain is worser. My third EUS was with secretin stimulation, but without direct pancreatic function test (they didn' t aspirate a fluid to bicarbonate measurement). Nothing was find. What is your pain like? Answer to your question. SIBO can cause symptomps like pancreatitis, I don' t know, if the lipase leveles can be elevated. Try to test also parasites. For SIBO is used rifaximin 1200 mg - 1600 mg per day for 10 days, often combinate with neomycim or metronidazole. As I wrote my problem is, that I am loosing my weight, so I am going next week to PET/CT. If it is SIBO, you have to have also low carbohydrates diet. You can also take pepermint oil pills.

So SIBO can cause left sided pains?

My pain is a quick squeezing/stabbing pain. Mainly upper left about two fingers below breast plate. It comes and goes i.e.: two quick squeezes then fine for hours for more squeezes. Its a deep pain. Sometimes it hits to the right, sometimes just my back (same locations). When I am in a more intense flare the pains hit more often. Drs say its atypical of pancreatitis as they say that is more of a constant drilling pain-vs sporatic stabs like mine. In the same breath though nothing else makes too much sense as my lipase was double normal the first episode as was my ca 19 marker which suggests pancreas inflammation. Now my lipase is typically 10-20 pts elevated when I test it-once in a while normal. My pain def is more frequent now where it used to hit every 4 months or so.

What are your drs thinking at this point? The secretion test-if they measure output is suppose to be the best, second to a regular EUS. Drs are saying the EUS can be normal in pancreatitis however as it just doesnt view the pancreas 100%

SIBO can cause very atipical symptoms, one of them is abdominal pain after eating, (can ne left, but it is only my opinion), some people have constipation and some people have diarhea, some people have mixed. Drs doesn't no so much about this condition. Did you tested for parasites? My doctors doesn't know, what it could be. I visited 5 gastroentorologists, two of them were profesors. Some of them told me, it can be pamcreatitis pain, even when EUS became negative, the first changes on pancreas can come after few years. So, I would like to do direct pancreatic function test. In my country, nobody do this test. So, I am checking, if I can do it in Switzerland (one of the best healthcare system in the world), but also very expensive. So, I have question, as I good understood; Your Drs said: IF they see on EUS pancreas very good and they didn't find no changes, could they rule out for 100% that you don't have chronic pancreatitis??? I was thinkimg about your pain, have you got DOPPlER USG to see trincus coeliakus artery, if there isn't some blockage. This artery supply spleen, stomach, pancreas, liver...

I was told the same, just because EUS clear doesnt mean its not pancreas issues. Drs are stumped as the pain is in that location, and lipase is always somewhat elevated-but for 5 years, and 6 EUS no changes, not one inch of damage shows. Ive had an MRCP 3x which views the whole stomach so nothing with spleen or liver either. My pain seems to be atypical as I dont have that nonstop drilling pain but I do know ppl who have the stabbing pain I have WITH the drilling pain. Whatever it is, and I really think pancreatitis its definitely getting worse

Oh and an odd thing-is sometimes when I have pain and eat the pain goes away. I dont have an ulcer either. Also, I get a weird twitching where the panc is, you can feel it on the outside. Its like a baby kicking high up

Hi Sesser,

why didnt your doctors do direct pancreatic function test during this 6 years. Where are you from, which hospital are you make a diagnosing? Do you know people with clear EUS and have chronic pancreatitis based on only direct pancreatic function test? My pain is constant, worse after eating, so I think it is chronic pancreatitis. One more question, is it possible to go to USA and do only EUS with direct pancreatic function test? I would like to ask you, if you can ask it your doctors. I think the cost of this is around 8000 dollars. Thanks. I am in contact with hospital in Geneve, but I dont know if they will do direct pancreatic function test. Tomas

Did you see this? http://www.ccjm.org/content/79/3/202/F2.expansion.html
It is algorithm from Cleveland Clinic - Ohio.

Well I suppose I havent had it done in these 5 yrs because Ive seen drs that dont 100% understand this disease, and most drs do not do the function test. I finally went out of state to MN and they suggested I do the secretion MRCP and EUS. The drug co that makes the stimulation has been out so once it is back in Ill get it-hopefully in spring.

Yes, drs say that I could still have CP despite normal EUS. I self referred myself to the UofMN......

If your lipase has never been elevated Id def keep looking at other things. If my lipase had never been elevated Id think other things first. You have had a HIDA scan?

No I didn't have HIDA SCAN. It is for gallblader examination, am I right? Did you have it? One more question are you taking the Creon, or some other enzymes and are you on diet? I try to take Creon 25000 for 3 times per day, but with no improvement. I also try low fat diet, but no improvement. So, you are waiting for spring, for examination. What about other hospitals in other states?

Yes I had one showed low ejection but wouldnt be cause for my pain. Get one, you may have sludge and could be reason for your pain

Yes, waiting for the test till spring when the drug will likely be in so they can do that test

If enzymes dont help, Id really look into other things!