I forgot to mention the info on the CF gene that can cause pancreatitis. It is a mutated CF gene called CFTR. TazLady is right, you need to find a GI that will treat her symptoms.
There are good gastroenterologists and there are bad ones. Some specialize in pancreatic problems, others don't, and personally, I think you got one of those that don't! I have had acute pancreatitis and now have chronic pancreatitis. The lab that tests my bloodwork says that with amylase, anything over 88 is high, lipase, anything over 63 is high. Some labs allow a higher range for both, but even those adjusted levels are less than your daughter's levels. Her lipase is especially high. Her triglycerides are high. Another important indicator. Don't buy it!
I don't menstrate anymore but know several women with CP that do, and they ALL say their pain is worse during their cycle. Mucus in the stool is a common symptom of poor pancreatic function (non absorption of fats), and most of us with CP have mucus in our stool everyday.
And as for the CF issue. Studies have shown a clear link between the CF gene and chronic pancreatitis, just that fact alone should have alerted the doctor.
Back pain is also another symptom of this disease. I posted earlier under some other questions in the last couple days about pancreatitis, you may want to look at those posts. IBS sounds like a cop out to me, and I would suggest you pursue this further. Good luck.
hi,
Just had to add my two cents in. I have Chronic Pancreatitis. It was years before I was diagnosed. While you have been told by the other forum advisors what the signs are...I must tell you that I never experienced sudden weight loss, nausea, vommitting or loss of appitite. I have always run a low grade fever tho'. I will say that the times I have experienced vomitting, nausea and loss of appetite were when I was in the middle of a pancreatic attack and needed hospitalization. I also am pretty sure that amylas and lipase levels arn't supposed to be over 63. But the doctor (specialist} I am seeing now is not concerned with what my levels are anymore. He says that my levels can be very high and I can have no pain at all, or they can be low and I can experieince extreme pain. The key is to see how your daughter feels and work with that. If she is experiencing pain, try to get her bloodwork done before she takes any pain medication. That can make the levels normalize. Also keep searching for a doctor who will treat your daughter and her symptoms. IBS has become such a common place diagnosis. Just wanting everyone who even MIGHT have this dreaded disease to ge the best care and earliest diagnosis they can.
TazLady
Hi - you seem to relate to pain during menstral cycle. What do hormones have to do with it. Do you know? I think she has pancreatitis. Will keep trying to put the pieces together. Again- does anyone know what is the cause for the mucus in the stools? Thanks
It sounds to me like your daughter may have pancreatitis, symptoms for this is as follows: severe abdonimal pain moving to the back, fever, loss of appetite, nausea, and vomitting. There may be yellowing of the skin. IBS symptoms are as follows: Diarrhea, and sometimes pain in the lower abdomen. The pain is often stopped by having a bowel movement. Hope this helps a little and good luck!!
I have the same symptoms as your daughter. I too had a Dr tell me it was IBS. That was a DR at the Mayo Clinic. I was told they were suppose to be the best. I think the IBS is just a symptom of what ever else is going on. I remember leaving that Drs office with an elevated liver and he said "we'll just keep an eye on it" None of the medications worked for me, and it is so frustrating to be in so much pain and no one will listen. Keep pushing it. If you can't find another Dr keep going in until they refer you somewhere. Thats what I did and it was the best thing I did.