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I was diagnosed with EPI: Need advice on diet, other management

Posted by pennie225 @pennie225, Sep 5, 2023

After being diagnosed with severe EPI I was told to follow a diet that has no meat , no fish , no dairy and nothing fried. Other members in my household eat what they want and mealtimes are depressing.

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Becky, Volunteer Mentor | @becsbuddy | Jun 11 10:31pm
In reply to @skip522 "I was diagnosed with EPI in early March. Pretty shocking since I always considered myself healthy...." + (show)
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I was diagnosed with EPI in early March. Pretty shocking since I always considered myself healthy. I am taking Creon. 1 36000 pill with meals and 1 or 2 12000 pills with snacks. My biggest challenge is that I have been losing weight even though I am eating 150 grams of protein per day. I had a CT scan and endoscopy along with blood work and so far no cancer that they can see. Just wondering where I can communicate with people with the same condition—as I never heard of EPI before I got it

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@skip522 Actually, you’re normal! None of us had ever heard of EPI, either! I’ve been dealing with it for a few years now. Creon 36,000 x2 pills with meals and 1 with snacks. I’m forever forgetting to take the pills, but I’m getting better. Once you get into the habit and learn to carry the capsules with you all the time, it will get better. I don’t think I can safely comment on the wt. loss and protein intake, because I never could understand it.

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janetgranados | @janetgranados | Jul 31 9:32am
In reply to @sunlover "Thanks, just signed up. Creon has been so helpful though I was frustrated with knowing what..." + (show)
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Thanks, just signed up. Creon has been so helpful though I was frustrated with knowing what to eat. Then SIBO and even more confused - conflicting diets for several diagnoses. Meds are good, now trying one new thing a day.

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@sunlover I started taking Creon about a year ago. It was work wonders for me however they have switch manufacturers from the German made Creon to the US. I had to switch in late May early June, but this year to the new formulation and it’s not doing the job. Has anyone else had to this problem and if so, what has your doctor said to do about it?

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caroleepi | @caroleepi | 5 days ago

I am new to the group. In April I was diagnosed with EPI. No definitive cause was determined. Creon was prescribed and the symptoms have stopped. My food plan is being managed. My question is how do you know that the Creon is working. Yes, the symptoms have been extinguished but am I getting the nutrition? I asked the doctor and a Creon rep and they did not have an answer. I would imagine it would be another elastase stool test.

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fred41 | @fred41 | 5 days ago

I have EPI and take Creon as well. I have wondered the same thing, including medication and vitamins. I hope someone can shed some light on this.

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venture | @venture | 4 days ago

I started a few years ago with severe EPI. Bottom line...you should be able to eat most what ever you want but it is key to lessen your fat intake with severe EPI. For me taking all my pills (5) within the first few bites of a meal works well. Also there is a time limit on your meals because the pills generally start working in your small intestine 20 minutes after you take them. Meaning you only have from minute 1 to minute 20 after your pills to eat....then stop. If you eat much past 20 minutes it is possible that food may not get digested as best as possible. Creon' website has info on vitamins, which were free to someone on commercial Health insurance. I take MVW complete formulation D5000. I had limited energy before I was diagnosed. With meds and vitamins I feel 20 years younger.

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Becky, Volunteer Mentor | @becsbuddy | 4 days ago
In reply to @caroleepi "I am new to the group. In April I was diagnosed with EPI. No definitive cause..." + (show)
Profile picture for caroleepi @caroleepi

I am new to the group. In April I was diagnosed with EPI. No definitive cause was determined. Creon was prescribed and the symptoms have stopped. My food plan is being managed. My question is how do you know that the Creon is working. Yes, the symptoms have been extinguished but am I getting the nutrition? I asked the doctor and a Creon rep and they did not have an answer. I would imagine it would be another elastase stool test.

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@caroleepi Welcome to Mayo Clinic Connect ! I’m sorry you’ve joined this group of EPI sufferers, but I’m so thankful that MCC is here so we all have a place to get/give help! And you’re correct, no cause has been found. It just comes out of the blue.
You mentioned that your food plan is being managed. How?
I was told that if the diarrhea is controlled and the stools are normal, then you are getting vitamins, etc. from your food. Before, when diarrhea controlled your life, you were malnourished. If I can find a fact-based answer, I’ll let you know

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