Oesophageal Patients Association
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I'm gaining weight on Creon plus GI specialists don't understand Pancreatic Enzyme Deficiency nor CREON

I started having GI problems, diarrhea, weight loss, hair loss, and more. I found a great GI specialist who put me on a 72 hour fecal test and the answer was, I had Pancreatic Enzyme Deficiency. I am a Type 1 diabetic. My late father was a Type 1 diabetic with Pancreatic Enzyme Deficiency. When he was diagnosed with pancreatic enzyme problems, it was back in the 1960's. There was nothing the doctors could do. He was always rail thin, but with nothing to break down his food, he became skin, bone and hairless. He looked horrible and was SICK!!!! My first GI specialist retired, so I had no doctor to advise me on taking CREON. I went to a new GI specialist because I needed my CREON adjusted, and the doctor informed me that CREON was a dangerous drug that caused pulmonary fibrosis. I informed him that I had the same thing my father had and deficient enzymes and diabetes go together many times. He would not listen, did not understand my problem and still said CREON was a dangerous drug and he disagreed with my first GI specialist and thought I did not have an enzyme deficiency problem. He had my medical information from my first GI specialist that stated I had a pancreatic enzyme problem. He made me go through another 72 hour fecal test. NO FUN! I had to call the doctor's office to get the results from the fecal test, knowing I was not excreting enzymes into my GI. The nurse told me that I had fat in my stool. WELL SHAZZAM! I told the doctor I only wanted my CREON adjusted. I was losing weight and my hair was falling out...and he said nothing! I called Abbott Labs, out of sheer desperation and a wonderful pharmacist calculated the dosage for me and gave me the correct amount of CREON to take. He was WONDERFUL!!!

My two concerns are: I am now gaining weight. I've gained 15 pounds with the right dosage from Abbott Labs. How do you rid the weight? Plus, doctors need to be educated on this enzyme disease. This GI specialist knew NADA about CREON or Pancreatic Enzyme Deficiency. EDUCATION IS SORELY NEEDED!

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