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