Conversation Between LittleLab4CF and veggiebin

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  1. I was reading a post on DIOS from April and your comments on pancreatitis/mucus barrier. I find your posts informative, so I thought Iíd ask your opinion. My daughter is in a constant state of some form of pancreatic pain. Docs donít take it seriously, since her lipase is only slightly increased. Last week, after an ER visit, I read an article about slightly elevated lipase being used as a cf diagnostic tool with marginal or low sweat chloride results. I was wondering if you ever find this to be true. In chronic pancreatitis, are the enzyme levels ever crazy high? She never tests that high, but they do get elevated. She has one mutation, and the 5T/12TG variant, which ambry says are both pathogenic. Jewish says that she has cf related disease, donít treat her for cf, but monitor her annually. How can we manage what she has going on? I see you have small duct disease, how small is your pancreatic duct? Hers is 0.5 mm. Any insight on this would be appreciated. We are in Longmont
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