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New to exocrine pancreatic insufficiency (EPI): What helps?
I was dignosed with e p i. Exocrine pancreatic insuffency in 2015 after having a severe reaction to premarin estergen cream then 2 weeks later i had an even more sever reaction to an infusion of reclast it is a biphosphonates l am severly allergic to phosphates, dr did not check for that. i had diarrhea lost 20 lbs destroyed 90 % of my pancreas dr gave me creon 3600 2 with each meal low fat diet that is all the information i got from him did research on web for diet and supplments .need a dr in austin tx that knows more about e p i would apprecate any info on this thank you jewill
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I may know one. If you can message me I can find his name but I don't know how close he will be as he is in Oakland Cty IIRC; around 14 or 15 mile
I have been diagnosed with exocrine pancreatic insufficiency, leaky gut, IBS, SIBO and although I have been to multiple doctors, wellness practitioners, follow the fodmap diet and have eliminated many foods after food sensitivity testing, have ongoing abdominal pain, diarrhea, constipation and overall poor health. I also take many supplements and have always enjoyed a healthy diet.
I guess I'm looking for a new direction, or perhaps the results of more recent research...or maybe, a miracle!
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4 Reactionsor yes, a hug! Thank you
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3 ReactionsHi, @dianehrdr, and welcome to Mayo Clinic Connect!
You have a lot going on and found a good place to learn more. You may want to spend some time reading through comments. This is a long conversation and you just might find inspiration for the new direction you mention, or a little nugget from another member that helps.
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I was diagnosed with EPI post COVID in 2022, lost 60lbs in 1 month and put on pancreatic enzymes.
My triggers are high fat ingredients (mainly good Omega 3 fats) that I can't do so I am currently doing Colestid (bile salt diarrhea) that they use post gallbladder removal and it works wonders.
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1 Reactionthank you very much for your input. I will look into Colestid. I too, lost a lot of weight, was malnourished, particularly in the beginning but repeatedly during bouts of SIBO or loss of appetite/diarrhea.
Gosh, it is really is interesting because I started being symptomatic after Covid in 2020 and not one doc has acknowledged that this may be the cause. I feel I have been viewed as an alcoholic or whatever they have perceived ahead of time, so this is refreshing to know in your case.
I am wondering if this is becoming a more frequent diagnosis since Covid hit the scene.
Also, may prompt more research.
My big question...is it worth my travel/flight/hotel/cost/fatique to travel to the Mayo Clinic or is this really a condition of strict management, mostly on our own?
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2 ReactionsHad anyone experienced vitamin B deficiency with EPI? I do daily injections of B12 daily X 2.5yrs and still can't my levels above 180, 500-3000 is optimal. Especially neurological, they want in the 1,000🤷♀️
Also my B3, Niacin has been undetectable for the same length of time and all their is is oral supplements, I just stopped absorbing it.
Concerned about long term effects on both but no one has been able to figure out what is going on. Not my Small Bowel, Sprue, Celiac or anything simple.
Just curious 🤷♀️
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1 ReactionI have recently been diagnosed with pancreatic insufficiency. I am taking Creon with meals. I also have long covid and did not have the pancreatic problems until after I was diagnosed with long covid.
After diagnosis (EPI) and taking creon, I went to see a wellness oriented nutritionist and it was then I started to really notice the difference with my overall health and recovery from weight loss and malnutrition. I now take a ridiculous and costly regiment of supplements, some prescribed by nutritionist and some by me. The more I read, the more I incorporate into my routine. It is concerning to not know if assimilation is at it's finest, but I know I feel and look better while taking the supplements. I would add, powder and liquid, sublingual if possible is best.
I have also benefitted from supplements that treat overall gut health like sodium butyrate and glucosamine for leaky gut. If your intestinal walls are not healthy (typical with EPI), then you will not absorb nutrients effectively.
Creon sounds like the really Expensive drug.$$$
I take VITAL supplements.
Take a small bite then Vital then eat.
Now I don't need 3 XS a day anymore. It depends on the type of food 'm going to eat.
My pancreatic insufficiency is much better now.
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