Is there anyone here that has been diagnosed with EPI but no underlying cause has been established?
I have been doing all sorts of testing but they all come back negative. My CF test result was 58 so I did the genetic test to confirm whether I have CF or otherwise and that came back negative thankfully.
I will now be undergoing an endoscopy ultrasound next week to have a closer look at the pancreas and gallbladder since all my MRI, CT scan, ultrasound and HIDA scan are clear. I also did an endoscopy and colonoscopy last summer but they did not show anything either.
All I know is that my pancreatic elastase was 145 in June and went down to 129 in September. I did another test this week to see where it is at since despite taking Creon I am not seeing any significant weight gain. I am just not losing more weight (however I had already managed to stop weight loss naturally last summer by drinking fresh cabbage juice daily). I used to weigh 50/51kgs and went down to 43.2kgs at my lowest.
My gastroenterologist tells me that I am a very rare case and could potentially fall within the 20% of rare cases for which an underlying cause is never established (as indicated in medical literature).
Any form of info would be appreciated. I have had constant pain in my upper right quadrant (like sharp stabs or my lower right rib needing to be ripped out and it sometimes goes right round to the centre of my back) since the end of April 2024 and I really would like to have some sort of relief.
Thank you
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Charlie_P
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Hi Charlie , I have this condition , I am taking Creon, I am 40 years old now and have had this condition since 2005, I feel like the only one with this condition and no one to talk about with , ask me anything you want and I will help if I can
Thank you for reaching out. I am just trying to understand if I understood you correctly. You have had EPI for the last 20 years with no underlying cause established and have been taking Creon ever since? If so, don't you get side effects from Creon?
Also I really struggle with food, especially eating out. I have all but stopped doing that and would much rather just eat at home as I can control the fat consumption. However, it is very tiring as I feel like I am cooking all day & it gets in the way of all the other things I do.
Hi , I was diagnosed in 2005 and started Creon in 2022, I had tests done as was feeling weak and tired and had oily Orange stools and was told I am malnourished , my pancretitis had slowly became worse that I need to stay taking Creon , I don’t like taking it but I have to , the gas is terrible , and the smell is awful, my stools smell really bad on Creon it is not nice and feel so embarrassed by this , I am to see my gastro doctor this year for a check up , hoping I can get some advise on side effects as no one seems to have a clue when I ask just get told to reduce my intake and see what happens , I can not eat a lot of fibre like Albran cerial which was my favourite as this and Creon together causes so many problems , There is not enough support for people with this condition, the only good thing with Creon is my stools are not oily anymore , they do make me go frequent which is not good for when I am in work , what do you struggle with your food ?
I struggle with fat content in food due to the EPI.
Creon gives me lots of bloating and I cannot take more than 8 pills a day (even though I should take more so that I can consume more fats).
I am very sorry to hear what you are going through. I use a book called Carb and Calorie counter which was recommended by my dietitian and I find it very helpful to calculate the fat content in food and to adjust my Creon intake accordingly. Also it was a relief to learn that not all food requires Creon consumption (eg. fruits & most veg).
I've had unexplained drop in vit and mineral levels, mild anaemia and low folate for years (6 or 7). Also had all sorts of difficulties with digestion and bowel movements and foods that I could digest easily. Diagnosed with M.E/CFS and Fibro and IBS in 2001. Everything was put down to that. Diagnosed with prostate cancer 2022. Had radiotherapy and hormone treatment and digestion got worse. Still had not seen a gastro or dietician. About 9 months ago I had a dietician appointment and she suggested EPI and I started Creon 25000. Also had ultrasound which came back clear so nobody knows why I have EPI. Find Creon very tricky. All sorts of cramps, gas etc and no real improvement in energy etc. Awaiting results of recent blood tests and gastro appointment. Lost all interest in food (not that I was ever very interested to be honest). I just eat because I have to. It's all so difficult and never seems to get any better. Sorry if this is long but gives you an idea that you are not alone. Many people with M.E. have undiagnosed EPI or have it for no known reason - not that I'm saying you have M.E.
I also have ME/CFS and fibromyalgia. I recently got diagnosed and I’ve had no information about it. So I came on here to see if I could find out more. I started on the lowest dose of Creon and I was fine. But she wanted me to go on the higher doses because I’m having severe bloating. Anyway, the higher make me kind of sick. I’m sure it’s a struggle for you. Just wanted to let you know someone else had the same issues you have.
Thank you. Yes same here. I started on Creon 10000 which was kind of OK but then Creon 25000 (with PancreX in between when no Creon available - P'X was a nightmare). I also have all sorts of digestive problems with Creon and my fatigue is worse than ever. Saw dietician again a few weeks back and she has suggested I try Nutrasym. Been prescribed but availability is patchy so when I get hold of some and have tried it for a few weeks I'll report back 👍
Thank you. Sorry to hear all the issues you are having although it helps me to feel not alone. I don’t know what Nutrasym is. I will have to look that up. Thanks
Nutrizym is just another PERT med - equivalent to Creon but dietician said some people get on better with some PERT meds than others so something to try
Thank you. Yes same here. I started on Creon 10000 which was kind of OK but then Creon 25000 (with PancreX in between when no Creon available - P'X was a nightmare). I also have all sorts of digestive problems with Creon and my fatigue is worse than ever. Saw dietician again a few weeks back and she has suggested I try Nutrasym. Been prescribed but availability is patchy so when I get hold of some and have tried it for a few weeks I'll report back 👍
Hi Nomojo, I am very sorry to hear about your struggles and thank you for being so brave to share. My mother's cousin had M.E. but I have never been checked for that nor told that it could potentially be one of the underlying factors. Thank you for letting me know about this. I will check with my doctor.
I hope you find some relief. I get same issues from Creon, the bloating, gas and cramps. I am told to take between 9 & 11 tablets in a day but I cannot really get past 8. I know I am not consuming enough fats right now but I try to keep the balance and am very mindful of what I eat.
I feel for you it’s a lonely place I’m also in it. About 3 years ago I experienced a dramatic loss of weight in the first 3 months of the year. I observed floating faeces and change of bowl habit. I am a retired toxicologist and knew what floating faeces meant namely poor fat absorption. My doctor put the two things together and I had an immediate scan to see if it was pancreatic cancer. It was not and I am here to tell the tale. More scans and tests followed. No cause was found, the only useful information was confirmation of my hiatus hernia.
I was put on CREON 2500 with minimal advice, dietician advice was also useless. At the dosage level suggested my weight did not go up. Those wonderful people at the Pancreatic Cancer Charity helped me. They said keep taking more CREON until your weight rises and poo sinks( I paraphrase a little!). Today I live a fully normal life but am very careful to eat regularly and always spread the CREON out throughout the meal.
As I expect you have come to learn CREON is often in short supply. I also use Nutrizyme at the same dosage level and notice no difference.
Please ensure that you CREON is kept cool never in a trouser pocket it will degrade. Also considerer stomach acidity if too much gets into the duodenum it reduces enzyme activity.
Thank you very much for your detailed response. This is helpful indeed. To date I have luckily not experienced any shortages with Creon. My only issues are that I really cannot take more than 8 tablets a day due to side effects.
I no longer have issues with my stools floating, but they are still not a normal colour despite me being careful with my diet.
I am very glad to hear that you live a normal life nowadays. Maybe there is light at the end of the tunnel for all of us.
Charlie, I have EPI and like there’s no reason for me to have it. I don’t drink I don’t smoke. The doctor can’t explain it. I did see an NIH study that said Covid could affect the pancreas. I told my doctor, but he said it’ll be a long time before they have enough studies to say definitely Covid caused my issue. It’s the only thing I can think of. I was diagnosed two years ago and just this past week I noticed myself getting my strength back. I went through so much before they figured out what was going on with me that my muscles atrophied. I wanted to reply because I’d love to hear the responses from other people. I got over the bloating, burping, diarrhea, but it took about 2 to 3 months. And then when I couldn’t get the medicine for various I would go backwards. So I had several times that happened. But today I’m feeling great and I hope that it continues. I wish you all the best and I hope that you get the same results that I got.
Thank you very much for your response especially since you mentioned the Covid co-relation which I have also asked my doctor about. I had Covid in August 2022 which attacked my gut. I was very sick for 10 days and had this immense fear which was very strange. Ever since then my immunity has been very weak. As soon as I travel I am sick whilst everyone else is fine. Then about 8 months ago I started losing weight, strength and experiencing staetorrhea. I literally felt like I was slowly dying and it took doctors 3 months to realise that I was suffering from EPI.
Today I am better as I am on a very controlled diet. I also do not drink or smoke and try to go for regular walks and do some stretching as otherwise I get very stiff. I also still work full-time from home, but it's very hard on some days especially when the pain in my upper right quadrant is nagging.
I just hope that the source of this can be found.
Thank you once again for your response and I really hope that you keep on feeling well.
They checked several times via ultrasound, CT Scan, HIDA Scan and MRI and nothing ever showed up. Then this week I underwent and Endoscopy Ultrasound and sure enough they found out that I have few minute stones in my gallbladder 😭😔😭.
I have been complaining about this pain for 8 months.
Hi, Charlie, had same problem,pain in the pancreas tail,for 9 months, not sharp but dull, pulling, however I was able to sleep.Undewent MRI, CT scan, Endo ultrasound nothing except slightly enlarged pancreas head.So diet,proton pump inhibitors and Creon after nine months brought me relief however the main is emotional condition
They did, but nothing was showing up! 😔 In fact I did a HIDA scan last November and the result was that my gallbladder function was fine and that there were no blockages. Only thing noted was bile reflux. I kept on insisting for further tests to see what is wrong with me and finally an EUS indicated that I have tiny stones.
wow. It’s amazing how these days we have to fight hard for ourselves. We know our bodies best. So are they doing anything about your gallbladder? You might have already said. I had 50 stones when they took mine out. I was shocked.
So did you actually remove your gallbladder?!? Wow 50 stones is a lot. I don't think I have that much as the report indicated "few". Removal of the gallbladder was suggested to me but I have not decided yet. I don't want to remove it unless it's absolutely necessary.
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High Fecal Elastase Results
weight loss
pain... not yet diagnosed.
📣 Discussion Topic: How has your relationship with friends or family changed since your diagnosis? 
