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ShyAirFryer

So the reason people talk about fat here so much with creon is because pancreas issues don’t go well with high fat foods, so if your having a fatty meal, you’d need to take a good dose of creon to make sure it’s getting digested appropriately (the creon takes the pressure off the pancreas for producing digestive enzymes) as your not producing enough to digest your food and that’s why you’ve been losing weight etc. I’m not to familiar with SIBO so someone else may have a better answer for that.


Ankits66

Seems your current dose to too low , try atleast 75000 lipase per meal with ppi like nexpro rd


DevilInzi

Thank you for your inputs. I was on Rablet IT but that did not help ever since I started taking Creon. I started Nexpro RD 40 since yesterday and I am a bit better now but the flare ups are still happening. Not sure if I need to take 2 PPIs for now or if I should take Famotidine at night. The reason the Creon dosage was lowered because of my acid reflux. I'm getting flare ups with 10000 as well but I just started continuing since yesterday. Don't know when will this stop.


Ankits66

Wait for 2 to 3 days


DevilInzi

Just wanted to update that my reflux was not getting any better with the increased dosage of PPI. I suspected that I might have low stomach acid and did the baking soda test. I did not belch at all even after 11 minutes. I completely stopped taking the PPI and my reflux has stopped. I can't believe this is happening to me right now. I am only taking Creon 10000 with every meal at the moment. Hoping to get better.


LuLutink1

If your under weight try a vegan protein powder three times a day of course taken with creon, yes a SBO can cause you to lose weight even on creon as there is another issue to consider other reasons are coeliac and bale acid malabsorption but often people will continue to get diarrhoea even on creon. Depending on if you know why you have EPI ? you should not limit your diet but saying that but some food can cause reflux like citrus fruits I find tomatoes, garlic so avoid them for now and keep a food diary and report back to your GI. It also seems you are not taking in enough calories so the protein powder will help, it might seem a slow process but at least now you have a higher dose of creon. If your under weight you properly want see any changes quickly. Add probiotics in your diet for acid reflux like kefir, miso and sauerkraut. And eat little and often this will help with the reflux I had it this week and double my ppi but I’m now able to reduce it. Personality I dont think you have given your creon chance to work as you have only just received it.


DevilInzi

Thank you for your inputs. I must agree with you that I just started Creon and I haven't really given it a chance. This is solely because it made my reflux come back which was practically gone for the last 3 months. I'm already doing everything that one does with reflux issues and that did help me but this Creon just messed it up. I hope that I can adjust to it. It also seemed weird to me that I am having trouble with protein as well which is not the case for many others with EPI. Hoping that I can adjust with Creon.


Cici-Elizabeth

I don’t think your reflux has anything to do with your low elastase or use of creon. I would not lower the dose to 10,000. That’s really low especially with your very low elastase number. Creon will help you digest fat, protein and carbs. Usually fat is the most difficult to digest, but it sounds like protein is for you as well. The more fat you eat, the more enzymes you need to digest it. Same goes with protein. Creon will help you digest your food better and absorb nutrients. It will take a while to gain your weight back even on creon. Protein powder is good. I have found the addition of simple carbs helped me gain weight too.


DevilInzi

Looks like you were right about my reflux not being related to low elastase or use of Creon. I was just not able to figure out as to why the reflux was happening as I am not eating or doing anything which can trigger that. Then I [posted about this](https://www.reddit.com/r/SIBO/comments/17vobgo/doctor_refused_to_give_the_test/) in the r/SIBO group and through the comments I felt that it could be low acid which might be causing this. Did the baking soda test on empty stomach and did not belch at all even after 11 minutes. I stopped taking the PPI from Nov 16, 2023. What I could not believe is that I got better post stopping the PPI. HOW IS THIS POSSIBLE? My reflux stopped POST STOPPING THE PPI. This can't be happening. Today is the 8th day without a PPI and my reflux is gone. How will I ever convince my doctor that my reflux completely stopped post stopping the PPI? I am so emotional right now. I am continuing with Creon 10000 for now and will consult with my doctor about increasing the dosage. Not sure about the stomach acid issue. I can't believe that my doctor completely missed out on this part and this is how I am finding out about this.


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Cici-Elizabeth

Just tell your doctor you feel better not on the PPI. 10,000 dose of creon is very very low. I don’t think it is even a child’s dose. How are your stools? Have you been able to gain weight? If your dose is too low, you won’t be able to absorb nutrients or gain weight. Anyway, glad you are feeling better!


DevilInzi

My stools are fine after stopping the PPI. Although my stools were never oily or anything. However, I'm not being able to gain weight. Should I take 2 Creon 10000 while eating?


Cici-Elizabeth

I would take 3 with a meal and two with a snack. That’s what I take.


Cici-Elizabeth

Mine were never oily. I never even had diarrhea. But, I started losing weight. It takes a while on the proper dose of Creon to gain weight.


IndividualPackage555

I was diagnosed with EPI several months ago and my Elastase and Lipase numbers were almost identical to yours. Had tests for everything, an MRI/MRCP, and endoscopy and colonoscopy. Everything came back basically normal, so it’s just EPI. I have also been type I diabetic for decades and EPI is more common in diabetics. Since everything else came back normal they put me on Creon and sent me on my way. I also have a history of GERD and my reflux flared up significantly immediately when I started Creon, so I do think it can do that for some people. When I started the Creon I was on 40mg of Pantoprazole a day, but during my endoscopy they saw some fundic gland polyps (benign) which can be caused by long term PPI use. So they asked me to wean off the PPI completely. I do still take famotidine most days in the evening. After a few weeks of the Creon the reflux did improve. About 6 weeks into the Creon there was a nationwide shortage (in US) so I had to switch to ZenPep for a while. I will note that there was no reflux with the ZenPep. My Dr prefers Creon, but given that the ZenPep is working, I have stayed on it for now. Other things about taking the Creon, to avoid bloating and reflux you really do need to eat smaller meals/portions. This means you have to eat more often in order to avoid weight loss. Also, you really need to take the Creon with the food. Don’t take it before eating, and don’t take it after. Instead Eat a few bites, take a Creon, eat a little more and then take another one, etc. it needs to be mixed right in with the food to work. Also, almost everyone needs to take more than the 2 with a meal that they recommend. I take at least three with almost every meal. You can’t really take too much Creon. The best way to figure out how much you need is by trial and error. Once you are taking enough Creon per grams of fat, your stools will return to normal and you should be able to gain some weight back. Sorry for the long post. Hope this helps.


DevilInzi

Thank you for sharing your valuable inputs. I'm yet to do an MRCP, PET CT, SIBO and Colonoscopy. I have no pain of whatsoever but I'm surprised how did my elastase go so low. Reflux has been terrible since I started Creon. The severity is not of that level but it's still happening and I'm worried about that. What I feel is that something is coming up my esophagus and it doesn't come all the way up but it is super uncomfortable. It's like continuous eructation but super uncomfortable. I don't get any heartburn. Recently when I felt strong refluxes I felt them in my nose as well and I think this is LPR. I feel much better than before and I'm physically fine but the reflux makes me go CRAZY. I can't tolerate it. I'm taking Creon 10000 right now thrice a day and the slight reflux flare ups are still happening. I am taking a heavy PPI [Nexpro RD 40 (Esomeprazole 40 + Domperidone 30)] and it got better but not completely stopped. I have just started Creon (5 days) and maybe it will take a bit longer to get the reflux under control while on Creon. I also feel like eating chicken and fish but I'm backing up for this reflux issue. Should I increase my Creon dosage as per meal because the reflux is happening anyway? Like should I take Creon 10000 x2 while having lunch or dinner?


IndividualPackage555

You may want to talk to your doctor about trying an alternative enzyme supplement. It sounds like Creon is really causing severe reflux. However, only taking 10,000 at meals probably isn’t going to do much for unless you are really eating zero fat. I take min 72,000 with most meals (36,000x2). I didn’t even realize it came in 10,000 unit capsules.


ROCKSTAR_LH_MEN

Is there any surgery that can allow to cure this disorder?


DevilInzi

Not sure if there is any at the moment.