Tired of Worrying About This

solisspirit · Post by **solisspirit** » Mon Oct 28, 2013 7:55 pm

Most of you know I'm undiagnosed so far, but I have a question that's been bothering me quite a bit. When I first went to my first GI he and after seeing my malabsorption rate, I asked him what he thought it could be most likely. He told me "Well, it could be celiac but I don't know why it would be that if your GP tested your blood for it and it came back negative. It could possibly be pancreatic insufficiency." I was floored. Now, not all, but a large percentage of those with pancreatic insufficiency i.e. chronic pancreatitis, have a long history of alchohol abuse, which I don't at all. They also are prone pains in the upper ribcage, I think in the sternum, of which I don't have either. And seeing as I've had these loose stools for about 8-9 years, and for the last two have had weight loss, but still no pain, I doubt it has anything to do with my pancreas. But I want to get your thoughts on all this and see who else as told the same thing. I also would like to know how serious chronic pancreatitis is, and if it interferes with the duration of a person's life, or if its something that can be maintained and eventually healed. Thanks.

Thumbs · Post by **Thumbs** » Mon Oct 28, 2013 8:25 pm

My sister has pancreatitis...but she did/does have a drinking problem. She has severe nausea and pain. She takes Morphine and Vicodin the pain can get so severe. I think she is generally constipated though.

Post by **tex** » Mon Oct 28, 2013 9:32 pm

Solisspirit,

Your doctor made a wild guess when you asked that question, with no test data to support it. The odds that your pancreas is the cause of your digestive problems are very low, IMO. Virtually anyone who has any IBD (including celiac disease and MC) will be prone to pancreatitis issues, but that doesn't mean that their pancreas is causing their digestive woes.

Your GI doc was confused about the value of the celiac blood tests. One thing that the celiac blood tests definitely are not capable of doing, is to rule out celiac disease or any other form of gluten sensitivity. Those blood tests can confirm celiac disease (in fully-developed cases), but they cannot rule it out. That common medical mistake is a primary reason why no more than approximately 5 % of all cases of celiac disease are ever diagnosed. Ever! And there is absolutely no officially-approved medical test for either diagnosing or ruling out any other type of gluten sensitivity.

Chronic pancreatitis can be a serious issue, if it actually exists, but when it's secondary to an IBD, it's just that — secondary.

Tex

solisspirit · Post by **solisspirit** » Mon Oct 28, 2013 9:59 pm

By secondary, you mean a lesser form of it and not as severe? I just remember doing a little research on it a while back and finally come to the conclusion I probably didn't have it, but if I did it was not pretty. I remember reading somewhere that once chronic pancreatitis is diagnosed, the patient has ike 5-7 years left...That scared me a lot. That's why it bothers me so much. On a side note, that doctor said in the same visit "Well, I think you're a pretty healthy person, we just have to figure out what is causing this problem. It could mean that you could take pancreatic enzymes for awhile." He didn't say "life_threatening", but he sure made it seem like a dark cloud was sitting over my head. It just bothers me to no end.

Post by **tex** » Tue Oct 29, 2013 9:47 am

By "secondary", I meant secondary to the primary issue, and caused by either the primary problem, or some other separate issue (i.e., not caused by an independent (isolated) problem originating in the pancreas itself. IOW, I meant that the odds are extremely high that any pancreatitis that might be present is almost surely due to some other digestive system issue that is causing widespread inflammation, (such as an IBD of some type).

Some doctors tend to be "gloom and doomers". They apparently feel that scaring patients by exaggerating the seriousness of issues will help to jolt them into doing something about (whether it actually needs attention or not). If the issue were actually life-threatening, he would have been obligated to immediately make arrangements for further tests to verify the need for intervention. To overlook or ignore a life-threatening issue in a patient can be grounds for a liability suit, so doctors tend to err on the side of caution.

Tex

DJ · Post by DJ » Tue Oct 29, 2013 5:17 pm

I don't like what your doctor said

Pulling an unfounded comment out of the air and saying "maybe" is frightening to a patient. It's standard to test for many things through blood work and stool specimens. Stay the course and get a real diagnosis.
In my case, I had given up on my GI because she wasn't very helpful in addressing the GI problems I presented with for many years and she wasn't listening well. When my diarrhea began, I was working with my family doctor who is a good man. He told me that he didn't know what to do next and that I needed a GI. He said that I should be checked for Carcinoid Diarrhea but he wasn't sure what else. That's a scary thought but it was prudent thinking. When certain symptoms are present, there is a list of things that are considered. It DOES NOT mean that they are likely. I was checked for Carcinoid Diarrhea and C. Diff then I had a colonoscopy with biopsies and was prescribed Entocort.
Don't focus on his comment. Focus on a real diagnosis!!

DJ