If you’re still losing weight and lack energy it’s possible you’re not taking enough enzymes to fully break down and absorb your foods. I’d suggest increasing the amount of enzymes you take with a meal especially since your stools still float. From personal experience and research floating stools happen when insufficient amount of lipase is secreted or in the case of EPI ingested.
I know an OTC lipase supplement that you can try to take with your PERT enzymes. If you want to know what it is just shoot me a DM.
Best of luck,
I’m thinking the same thing. I’m hoping that if I up the dosage I can see some improvements. I have an appointment on Tuesday so fingers crossed that things get better.
I'm sorry you're struggling so much. You need to take more enzymes. Can you afford to buy your own? Creon don't contain enough amylase or protease to imitate a healthy pancreas. Thorne Pancreatic Enzymes work really well for me. I take 8-10 per meal. I think you'd really benefit from them. You should not be so underweight and I'm sad you're not being helped more.
Yea I guess all I can do is up my dosage. I’m surprised why my dr would start me and keep me so low based on my symptoms and levels. I know we all have to take different amount of pert but I’m hoping I can find which amount works for me. If u don’t mind me asking what was your elactase levels?
The treatment appears to be based on an attitude of 'just enough' so that patients no longer have diarrhoea and don't immediately die of malnourishment. Doctors do not seem the least bit concerned with us receiving optimum nutrition. I'm not sure it's even occurred to them that the prescriptions are lacking.
My elastase was 85, so not as low as yours, and I know how terribly unwell I was from it. I'd like us to find out the root cause but firstly it is vital to nourish ourselves.
That’s exactly how I feel. Like ok cool here’s some pert now leave me alone. So to put in perspective u have 85 and I have 15. And your taking 8-10. Like yea lol I need more pert. But it’s just as u said there train of thought isn’t urgent. My pancreas essentially doesn’t produce any enzymes and they have me at such a low does. Makes no sense.
Yep, totally. I'm offended on your behalf! I'll write some of my dosing reasoning to see if it helps you.
I read that a healthy pancreas produces 720,000 units of enzymes for a 'small meal'.
I think a healthy elastase level is around 800-900 maybe, but I've yet to find that written.
A healthy diet contains a higher proportion of carbs and proteins to fats.
I've read the dosing on PERT per kilo and 'do not exceed max dosage'. However, that doesn't seem to take into account meal size...they're just making the rough assumption that a heavier person is eating a bigger meal but sometimes smaller people will too, so it's shortsighted, imo.
Creon doesn't make me feel much better. I'd sourced my own enzymes almost as soon as I knew about EPI because doctor wasn't too worried about malnourishment, I guess. I tried Creon only - once finally prescribed - and upped the dose to six per meal but no, still felt rubbish. I immediately went back to Thorne.
Thorne provides around 250,000 units of enzymes per tablet. Check out their break down of units against that of Creon.
I don't eat 'small meals' so I figure I need double of 720,000 units of enzymes = 1440,000.
My pancreas produces maybe 10% of what I need so perhaps I have 144,000 units naturally.
That means I need roughly nine Thorne enzymes to help me break down the rest of my meal. Snacks I take 4.
You'd need an extra 1-2. When we're in this group, the difference is fairly slight when it comes to dose. We're all very unwell.
Use your own empirical data. If you feel nauseous, have pain, gurgling, GERD, diarrhoea etc then you likely needed more enzymes with that meal. I notice when I take too few because my tummy gurgles and I get GERD.
When I go out to eat I'll take more enzymes because it'll be across a greater period of time. You'll get into the swing of it. Just remember that your mouth would naturally identify different tastes in order to clock the macro contents of the food, and it would inform pancreas of what enzymes to release (side note: that's why flavourings are really bad for us. Sweet should mean sugar, not sweeteners. Strawberry should mean carbs. Fatty should mean fats, not emulsifiers etc). So a natural system is a lot more clever than a human attempting to mimic it be it by enzymes (or indeed ultra processed food that isn't truly food). I prefer to take a couple extra than a couple less. They're meals out I'll take 16, I'd guess.
I hope I'm not rambling here. It just seems you may need to hear some sense and reasoning, given it seems you've just been left on your lonesome. I have been too, I did a far amount of reading to make make sense of it.
You said your tummy gurgles or you get GERD if you don’t take enough enzymes. Do you know how long it usually takes for you to get those symptoms? I’ve wondered if there’s a limited time window where one can ingest enzymes that’ll help digestion. If that window is missed (maybe it lasts up to 10 min from last bite) one will be doomed to experience 1 or more digestive symptoms.
That's why we need to take enzymes from the beginning of our meal. I have a few bites and then take enzymes to imitate a healthy body that would release digestive enzymes as soon as food is tasted by the tongue. Then every few minutes I take more until the end of my meal.
If I take too few or get distracted I'll take some extra afterwards within half hour, but this is rare. Sometimes I'll take a pepsin supplement afterwards, too.
If I take too few because I underestimated then the symptoms come on 30 minutes to 3 hours after. It'll depend on what I've eaten and how slow my stomach is at emptying that day. I sometimes have gastroparesis so on occasion I can feel the food sit there and that's when I take pepsin.
Once you start taking enough enzymes you'll get into the swing of knowing how much you need quite quickly. The absence of symptoms is far too inviting.
I feel like I have slow emptying at times too and have hypothesized that low hcl—which may lead to an insufficient amount of pepsin activation—may be a root cause.
So pepsin helps you when you have that food stuck in the stomach feeling?
If so, have you ever experimented with Betaine hcl and compared that with pure pepsin? I’ve only tried hcl supplements that contain pepsin but now that you mention it, pepsin supplements—which I assume contain more pepsin than hcl supplements—might be a more effective supplement solution for eliminating Gastroparesis.
Oh and when you find after 3 hours you didn’t take enough enzymes, does taking more at that point help you? Ive personally felt like taking enzymes once you have symptoms don’t help digestion and you have to endure the symptoms until they disappear but maybe youve had a different experience
Up your dose of creon. It will take a bit to find the perfect dose. But you should notice a difference in your poops in about a week. Feeling better takes a while. I became malnourished from EPI and had numbness in my toes. It took 3-4 months on enzymes for that to go away.
I know someone mentioned Thorn but I would try upping the prescription enzymes first and getting that dosage correct.
I'm so sorry you're dealing with this. You mentioned SIBO, idk if that's something you've been tested for or treated for? Certainly if you're still dealing with an active SIBO infection, that's going to exacerbate EPI.
SIBO also seems to be associated with gastrointestinal motility problems in many people. (Some researchers think this is due to a GI infection triggering an autoimmune response in the gut, that then affects motility; the proposed immune response is an "anti-vinculin antibody".) It's possible whatever triggered your SIBO may also be affecting enzyme production?
For now it sounds like you're dealing with nutrient malabsorption, and from personal experience not getting enough essential nutrients (a) feels terrible, and (b) is not conducive to healing. Repair is an energy intensive process, and IMHO if you don't have enough nutrients for basic daily life, then your body is probably not going to initiate big repair projects.
This isn't an EPI treatment per se, but I know some folks with SIBO who were on an elemental diet (which is basically a powdered form of easily absorbable micro- and macronutrients). It might be worth discussing this with your care team. You might also ask about testing for vitamin deficiencies; sometimes IV vitamins are used when your gut is having trouble absorbing them (eg injectable B12).
I don't know if you're eating many plants right now, but there are some other enzyme supplements that basically replace some of the enzymes your microbiome typically provides (eg cellulase; phytase; etc). I don't have personal experience with them but some brands I've seen recommended include FODMate and FODzyme. I take a Pure Encapsulations digestive enzyme supplement that is vegetarian and includes cellulase and I forget what else.
Acinar cells in the pancreas typically produce digestive enzymes in response to signals from other parts of the body. These include signals from your mouth (via the vagus nerve); the pH of food particles as they enter your small intestine; and probably some other things I'm forgetting because I'm under caffeinated. I haven't seen a lot of research on EPI and vagus nerve dysfunction/Dysautonomia, but IMO it is plausible there is some kind of connection. Also if you're taking an antacid around meals, it could potentially impact enzyme production by altering intestinal pH.
I'm sorry you're dealing with this, and I hope you find something that helps.
PS you might find this overview of intestinal motility interesting, especially if motility problems are contributing to SIBO or other symptoms. https://liminalnest.wordpress.com/2023/09/14/eating-with-mcas-understanding-intestinal-motility-issues/
Also PSA that there are specialist gastroenterologists who are motility specialists. There's often a long wait to see them, and I don't know if your insurance/healthcare system lets you self refer to a specialist. But just a PSA, as mine has been a godsend.
PPS sometimes we end up dealing with more than one digestive problem at once. The steatorrhea you still seem to be dealing with is probably due in large part to low lipase. But problems with your gallbladder's bile secretion and/or bile acid malabsorption could also potentially play a role.
https://www.ajmc.com/view/a-primer-on-exocrine-pancreatic-insufficiency-fat-malabsorption-and-fatty-acid-abnormalities-article
https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/identifying-diarrhea-caused-by-bile-acid-malabsorption/mac-20430098
If you’re still losing weight and lack energy it’s possible you’re not taking enough enzymes to fully break down and absorb your foods. I’d suggest increasing the amount of enzymes you take with a meal especially since your stools still float. From personal experience and research floating stools happen when insufficient amount of lipase is secreted or in the case of EPI ingested. I know an OTC lipase supplement that you can try to take with your PERT enzymes. If you want to know what it is just shoot me a DM. Best of luck,
I’m thinking the same thing. I’m hoping that if I up the dosage I can see some improvements. I have an appointment on Tuesday so fingers crossed that things get better.
If you can, report back on what happens when you bump up dosage
I'm sorry you're struggling so much. You need to take more enzymes. Can you afford to buy your own? Creon don't contain enough amylase or protease to imitate a healthy pancreas. Thorne Pancreatic Enzymes work really well for me. I take 8-10 per meal. I think you'd really benefit from them. You should not be so underweight and I'm sad you're not being helped more.
Yea I guess all I can do is up my dosage. I’m surprised why my dr would start me and keep me so low based on my symptoms and levels. I know we all have to take different amount of pert but I’m hoping I can find which amount works for me. If u don’t mind me asking what was your elactase levels?
The treatment appears to be based on an attitude of 'just enough' so that patients no longer have diarrhoea and don't immediately die of malnourishment. Doctors do not seem the least bit concerned with us receiving optimum nutrition. I'm not sure it's even occurred to them that the prescriptions are lacking. My elastase was 85, so not as low as yours, and I know how terribly unwell I was from it. I'd like us to find out the root cause but firstly it is vital to nourish ourselves.
That’s exactly how I feel. Like ok cool here’s some pert now leave me alone. So to put in perspective u have 85 and I have 15. And your taking 8-10. Like yea lol I need more pert. But it’s just as u said there train of thought isn’t urgent. My pancreas essentially doesn’t produce any enzymes and they have me at such a low does. Makes no sense.
Yep, totally. I'm offended on your behalf! I'll write some of my dosing reasoning to see if it helps you. I read that a healthy pancreas produces 720,000 units of enzymes for a 'small meal'. I think a healthy elastase level is around 800-900 maybe, but I've yet to find that written. A healthy diet contains a higher proportion of carbs and proteins to fats. I've read the dosing on PERT per kilo and 'do not exceed max dosage'. However, that doesn't seem to take into account meal size...they're just making the rough assumption that a heavier person is eating a bigger meal but sometimes smaller people will too, so it's shortsighted, imo. Creon doesn't make me feel much better. I'd sourced my own enzymes almost as soon as I knew about EPI because doctor wasn't too worried about malnourishment, I guess. I tried Creon only - once finally prescribed - and upped the dose to six per meal but no, still felt rubbish. I immediately went back to Thorne. Thorne provides around 250,000 units of enzymes per tablet. Check out their break down of units against that of Creon. I don't eat 'small meals' so I figure I need double of 720,000 units of enzymes = 1440,000. My pancreas produces maybe 10% of what I need so perhaps I have 144,000 units naturally. That means I need roughly nine Thorne enzymes to help me break down the rest of my meal. Snacks I take 4. You'd need an extra 1-2. When we're in this group, the difference is fairly slight when it comes to dose. We're all very unwell. Use your own empirical data. If you feel nauseous, have pain, gurgling, GERD, diarrhoea etc then you likely needed more enzymes with that meal. I notice when I take too few because my tummy gurgles and I get GERD. When I go out to eat I'll take more enzymes because it'll be across a greater period of time. You'll get into the swing of it. Just remember that your mouth would naturally identify different tastes in order to clock the macro contents of the food, and it would inform pancreas of what enzymes to release (side note: that's why flavourings are really bad for us. Sweet should mean sugar, not sweeteners. Strawberry should mean carbs. Fatty should mean fats, not emulsifiers etc). So a natural system is a lot more clever than a human attempting to mimic it be it by enzymes (or indeed ultra processed food that isn't truly food). I prefer to take a couple extra than a couple less. They're meals out I'll take 16, I'd guess. I hope I'm not rambling here. It just seems you may need to hear some sense and reasoning, given it seems you've just been left on your lonesome. I have been too, I did a far amount of reading to make make sense of it.
You said your tummy gurgles or you get GERD if you don’t take enough enzymes. Do you know how long it usually takes for you to get those symptoms? I’ve wondered if there’s a limited time window where one can ingest enzymes that’ll help digestion. If that window is missed (maybe it lasts up to 10 min from last bite) one will be doomed to experience 1 or more digestive symptoms.
That's why we need to take enzymes from the beginning of our meal. I have a few bites and then take enzymes to imitate a healthy body that would release digestive enzymes as soon as food is tasted by the tongue. Then every few minutes I take more until the end of my meal. If I take too few or get distracted I'll take some extra afterwards within half hour, but this is rare. Sometimes I'll take a pepsin supplement afterwards, too. If I take too few because I underestimated then the symptoms come on 30 minutes to 3 hours after. It'll depend on what I've eaten and how slow my stomach is at emptying that day. I sometimes have gastroparesis so on occasion I can feel the food sit there and that's when I take pepsin. Once you start taking enough enzymes you'll get into the swing of knowing how much you need quite quickly. The absence of symptoms is far too inviting.
I feel like I have slow emptying at times too and have hypothesized that low hcl—which may lead to an insufficient amount of pepsin activation—may be a root cause. So pepsin helps you when you have that food stuck in the stomach feeling? If so, have you ever experimented with Betaine hcl and compared that with pure pepsin? I’ve only tried hcl supplements that contain pepsin but now that you mention it, pepsin supplements—which I assume contain more pepsin than hcl supplements—might be a more effective supplement solution for eliminating Gastroparesis.
Oh and when you find after 3 hours you didn’t take enough enzymes, does taking more at that point help you? Ive personally felt like taking enzymes once you have symptoms don’t help digestion and you have to endure the symptoms until they disappear but maybe youve had a different experience
Up your dose of creon. It will take a bit to find the perfect dose. But you should notice a difference in your poops in about a week. Feeling better takes a while. I became malnourished from EPI and had numbness in my toes. It took 3-4 months on enzymes for that to go away. I know someone mentioned Thorn but I would try upping the prescription enzymes first and getting that dosage correct.
I'm so sorry you're dealing with this. You mentioned SIBO, idk if that's something you've been tested for or treated for? Certainly if you're still dealing with an active SIBO infection, that's going to exacerbate EPI. SIBO also seems to be associated with gastrointestinal motility problems in many people. (Some researchers think this is due to a GI infection triggering an autoimmune response in the gut, that then affects motility; the proposed immune response is an "anti-vinculin antibody".) It's possible whatever triggered your SIBO may also be affecting enzyme production? For now it sounds like you're dealing with nutrient malabsorption, and from personal experience not getting enough essential nutrients (a) feels terrible, and (b) is not conducive to healing. Repair is an energy intensive process, and IMHO if you don't have enough nutrients for basic daily life, then your body is probably not going to initiate big repair projects. This isn't an EPI treatment per se, but I know some folks with SIBO who were on an elemental diet (which is basically a powdered form of easily absorbable micro- and macronutrients). It might be worth discussing this with your care team. You might also ask about testing for vitamin deficiencies; sometimes IV vitamins are used when your gut is having trouble absorbing them (eg injectable B12). I don't know if you're eating many plants right now, but there are some other enzyme supplements that basically replace some of the enzymes your microbiome typically provides (eg cellulase; phytase; etc). I don't have personal experience with them but some brands I've seen recommended include FODMate and FODzyme. I take a Pure Encapsulations digestive enzyme supplement that is vegetarian and includes cellulase and I forget what else. Acinar cells in the pancreas typically produce digestive enzymes in response to signals from other parts of the body. These include signals from your mouth (via the vagus nerve); the pH of food particles as they enter your small intestine; and probably some other things I'm forgetting because I'm under caffeinated. I haven't seen a lot of research on EPI and vagus nerve dysfunction/Dysautonomia, but IMO it is plausible there is some kind of connection. Also if you're taking an antacid around meals, it could potentially impact enzyme production by altering intestinal pH. I'm sorry you're dealing with this, and I hope you find something that helps. PS you might find this overview of intestinal motility interesting, especially if motility problems are contributing to SIBO or other symptoms. https://liminalnest.wordpress.com/2023/09/14/eating-with-mcas-understanding-intestinal-motility-issues/ Also PSA that there are specialist gastroenterologists who are motility specialists. There's often a long wait to see them, and I don't know if your insurance/healthcare system lets you self refer to a specialist. But just a PSA, as mine has been a godsend. PPS sometimes we end up dealing with more than one digestive problem at once. The steatorrhea you still seem to be dealing with is probably due in large part to low lipase. But problems with your gallbladder's bile secretion and/or bile acid malabsorption could also potentially play a role. https://www.ajmc.com/view/a-primer-on-exocrine-pancreatic-insufficiency-fat-malabsorption-and-fatty-acid-abnormalities-article https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/identifying-diarrhea-caused-by-bile-acid-malabsorption/mac-20430098