what was your secret to getting an appt. at Mayo? I have been trying for 2 months and in December they say they are booked through the end of February and haven't open appts. beyond February. Thanks for any suggestions and glad you will be getting help and please keep us updated on what Mayo does in terms of testing.
No cookbooks I look on line a little. I spend some time on a Facebook website."Living with Exocrine Pancreatic Insufficiency (EPI) Support". It is a pretty great website but also extremely difficult to read at times. Many peoples problems but everyone tries to help with info that sometimes is over abundant Eating turkey and chicken like there is no tomorrow. Sick of it
I have been to Cleveland Clinic in Miami, the gastroenterologist I saw, was rude and no help at all, he diagnosed me with an atrophic pancreas. I asked him what do I do: he said "como back in 6 months, you will either have cronic pancreatitis (which I think you already do), cancer or diabetes. After that horrible experience, I went to Mayo Clinic, the gastroenterologist was very nice, but still no help, no treatment, nothing. Neither seem to understand all my GI problems due to my atrophic pancreas.
Finally I went to the Functional medicine Department in Cleveland Clinic Ohio. They have a GI comprehensive test (Genova Lab) and they tested me for mold. First they treated me for all my GI problems and detoxed me from the mold. They gave me OTC pancreatic enzimes and I have felt they saved my life
@cheryl46 - how do you find avoiding fat in your food day to day? Do you feel deprived keeping your food low fat? Which symptoms does avoiding food high in fat help alleviate for you?
@montanasky I have collagenous colitis along with EPI and my primary symptom was diarrhea. Others have floating stools, gas/bloating/stomach pain, and unexplained weight loss. We all vary a great deal in the symptoms we have.
@montanasky I have collagenous colitis along with EPI and my primary symptom was diarrhea. Others have floating stools, gas/bloating/stomach pain, and unexplained weight loss. We all vary a great deal in the symptoms we have.
Hello @j18 and welcome to Mayo Clinic Connect. I see that you are newly diagnosed with EPI. As this is your first post, would you share a little about how this diagnosis came about? How long have you been taking Creon?
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Having a referral helps
I have found to avoid anything that's high in fat helps.
I know everyone is different but that's my main trigger.
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1 ReactionThank you.
@jkarmazin
I have been to Cleveland Clinic in Miami, the gastroenterologist I saw, was rude and no help at all, he diagnosed me with an atrophic pancreas. I asked him what do I do: he said "como back in 6 months, you will either have cronic pancreatitis (which I think you already do), cancer or diabetes. After that horrible experience, I went to Mayo Clinic, the gastroenterologist was very nice, but still no help, no treatment, nothing. Neither seem to understand all my GI problems due to my atrophic pancreas.
Finally I went to the Functional medicine Department in Cleveland Clinic Ohio. They have a GI comprehensive test (Genova Lab) and they tested me for mold. First they treated me for all my GI problems and detoxed me from the mold. They gave me OTC pancreatic enzimes and I have felt they saved my life
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Fat is my main trigger too!
Mercedes
@cheryl46 - how do you find avoiding fat in your food day to day? Do you feel deprived keeping your food low fat? Which symptoms does avoiding food high in fat help alleviate for you?
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1 ReactionWhat are your low elastase symptoms? My two tests were at 101 and am wondering if this is what's causing a multitude of symptoms
@montanasky I have collagenous colitis along with EPI and my primary symptom was diarrhea. Others have floating stools, gas/bloating/stomach pain, and unexplained weight loss. We all vary a great deal in the symptoms we have.
@debhammel
I have newly diagnosed EPI and trying to balance food with CREON. Any one losing weight?
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1 ReactionHello @j18 and welcome to Mayo Clinic Connect. I see that you are newly diagnosed with EPI. As this is your first post, would you share a little about how this diagnosis came about? How long have you been taking Creon?
I look forward to hearing from you again.
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