Thank you for your post - I'm brand new (today) to this site and registered after finding your post via a google search for SIBO/EPI

Please keep me posted as to your experiences. I had abdominal surgery about 18 years ago and am just now having adverse issues that have led to a new doctor stating I have both SIBO and EPI. I just started on Creon for the EPI this past Monday - no benefits yet, so hoping it takes a bit to work. Have been on a probiotic since December.

Not sure what else to do yet to regain weight and reverse the malnutrition that has been going on for several months.

Anxious to hear how things are going for you after these past few months since you posted.

 

The OP hasn't posted since November but I think there's a lot of truth in that low stomach acid means reduced enzymes, maldigestion and bacterial overgrowth. I think the main reason for it for IBS / SIBO / GERD is overeating. This is explained well here:

http://chriskresser.com/the-hidden-causes-of-heartburn-and-gerd

I'm interested though in your post that you need to gain weight. Would you say you're an undereater rather than an overeater?

Dogs are renowned for overeating and wolfing their food down so this makes sense that they could get SIBO. Eating disorders generally can cause SIBO but I would think mainly from someone fasting for too long then making up for it by overloading their stomach later on - something like binge eating. So the way we eat might have a lot to do with it. The OP was an endurance athlete and I remember reading a report by another athlete who got SIBO because of his heavy carb diet.

I've found the gas is reduced a lot from eating main low carb and eating smaller meals but I still get gas easily from eating carbs and an annoying bubbling / burping in my throat which I think might be a form of GERD. These things are all related.

 

Sorry for the delay in providing an update - I had been having a lot of trouble logging on from my phone and tablet, but finally got to a computer.

My SIBO never returned while I was taking the pancreatic enzymes, though I did continue to lose weight while taking them. I also had a lot of side effects from every type of enzyme that I tried (Creon, Zenpep, Pertzye, Ultresa and Digaz). A couple of months ago I found out that I also had a tapeworm infection that I caught while on a vacation in Africa a couple of years ago, and as soon as we eradicated the tapeworm I quickly gained some weight back (5 pounds in 10 days) and started to feel a lot better, and my pancreatic function returned to normal so I was able to stop the enzymes. I've been off the enzymes for 6 weeks and my weight has remained stable during that time. My GI doctor now thinks that the tapeworms may have caused a partial blockage of my pancreatic duct, which is what likely caused all of my problems.

For those of you still searching for answers, please don't give up. This was an 18-month journey for me, and during that time I was diagnosed with "stress" by one doctor and "constipation" by another, and had another doctor tell me that I just have to accept the fact that I have "a sensitive gut." I had another doctor tell me that the weight loss was "just due to my body changing," and one even told me that most women my age would be happy to be losing weight so I shouldn't be complaining, though the worst of all was when a doctor told me that my weight loss was due to the fact that I wasn't eating enough and that I should be "eating at McDonald's every day, and getting an extra order of fries." After 18 months of enduring this type of treatment, and after thousands of dollars in medical expenses and countless hours sitting in waiting rooms at doctor's offices and labs, I came close to giving up on continuing to search for answers but I'm so glad I didn't. I insisted on going to an Infectious Disease doctor even though all of my other doctors told me I didn't have an Infectious Disease, but sure enough it was this ID doctor who fixed me. I'm feeling 80% better, which is a huge improvement for me, and am hopeful that with time my body will heal and I'll improve even more.

One thing I learned during the process was not to accept "recurrent SIBO" as a diagnosis, because there always should be a reason for recurrent SIBO, and the SIBO won't go away for good until the underlying cause of it is treated. In my case that was a tapeworm that caused EPI, but that's probably a rare case. I went through seven doctors and the first five of them ran a few tests and then sent me on my way with a few prescriptions and some sort of "made-up" diagnosis since they didn't know what was really wrong with me. It took me constantly going to new doctors and asking for new tests to get things figured out, but I eventually got it sorted out and hoping everyone else dealing with seemingly undiagnosable and/or untreatable GI problems will find their answers soon!

 

Hi So I realize this post is a little old but I'm wondering about something Iron Girl-- so hopefully you'll get an email that there is a new post

A little background: I am a healthy 28 year old female with a good diet and I also work out a great deal... running a half marathon tomrrow actually. I have been struggling with abdominal pain/discomfort/tenderness (mostly to the upper abdomen, specifically the right side) and gas, bloating, distention for about 10 months now. I also tested + for fecal fat (9g)-- meaning I am not properly digesting fat 100% and I will sometimes see undigested food pieces in my stools. I've had a million tests (most of which I insisted upon) including ones for my pancreas (my fecal elastase was >500... I had an MRCP w/secretion stimulation meaning they wantched my pancreas secrete enzymes and that was normal, and I and an EGD/EUS which is the most sensitive test (that I am aware of) for pancreatic issues). I've also been ruled out for gallbaldder disease and liver dysfunction (normal labs, normal RUQ ultrasound and normal HIDA scan).

I am just curious as to what test determined you had EPI? Was it the fecal elastase? What were your symptoms? Were you maldigesting fat (loose, floaty, frothy, greasy looking stools)? I'm considering starting over the counter enzymes to see if that helps. I feel like I have all of the symptoms of EPI but my fecal elastase was beyond normal (>500) and my MRCP w/secretin stimulation was also normal-- showing my pancreas is secreting adequate enzymes... its all very confusing to me. On top of that, I have read that the pancreas has a tremendous resevere and that 90% of the pancreatic function has to be lost (meaning 90% of the lipase secretion must be dimished) in order to experience symptoms such as clinically elevated fat in stools (>7g).

I am also getting tested for SIBO (hopefully in a few weeks... the lab I am going through is not sure they will have the equipment by then) as I have read that can cause simualr symptoms... also I had been on a PPI for > 6 months (which obviously dimishes stomach acid and can cause SIBO).

Anyway... I feel like I may be in a simular boat as you with all of this. Any help you can provide would be tremendously helpful!

Thanks so much in advance

 

Hi christineB, I'm really sorry to hear about your ordeal. My GI doctor provided the EPI diagnosis based on a combination of increased levels of fecal fat, low fecal elastase levels and an increased volume and frequency of stool. It sounds like you're doing a great job at pushing for further testing!!! From what I recall, the over-the-counter digestive enzymes are at levels much lower than the prescription enzymes. Perhaps you could talk to your doctor about the possibility of trying the prescription enzymes to see if they help. From what I found, my doctors were more than happy to write a prescription for pancreatic enzymes since they generally are well-tolerated (though I was the exception to that rule), just so you can see if they help. Have you been on antibiotics at all? For me, everytime my doctors prescribed antibiotics I would get better temporarily, which is why they now think I had recurring SIBO. I had one doctor keep insisting that I take PPIs even though I kept saying they made me worse, and I finally started ignoring her (and found a new doctor) because I felt certain I had SIBO and knew that the PPIs would make it worse.

One other thought for you possibly to explore, if you haven't already, is whether you may have a food intolerance. I worked with a nutritionist for four months on a full-blown elimination diet, which was very difficult (especially since I was training for an Ironman at the time), but from what I found it is the best way to identify a food intolerance. We found that I was intolerant to gluten and lactose at the time, but once the SIBO was eradicated I eventually was able to tolerate both. If you have a food intolerance, it's not something that always shows up in any sort of testing, so from everything I read, an elimination diet is the only way to get definitive answers.

Also, if you haven't already had a test done for intenstinal motility, that may be something else to consider. If food is taking too long to pass through your small intestine, that could lead to SIBO. Mine tested normal, which is why the GI doctor that ordered the test (the same one who prescribed PPIs and told me to eat at McDonald's every day) insisted I didn't have SIBO.

Please keep me posted on how you're doing, and best of luck to you in getting some answers! Until then, one thing you may want to try to alleviate symptoms, if you haven't already, is fennel seed tea, which was a HUGE help for me with the bloating and distention. My bloating was so bad that I still have significant stretch marks from it, but once I found the fennel tea it improved greatly.

 

Hi-- Thanks so much for the response!!!

If you dont mind me asking, what was your fecal fat? and your fecal elastase number? Its very confusing because my elastase was >500 indicating great pancreatic function but I had a fecal fat of 9g... and as far as I know all other causes of fat malabsorption have already been ruled out (except for SIBO, which I am being tested for in a few weeks). I havent been on any antibiotics recently-- I kind of want to try one to see if it helps LOL. I also haven't been tested for food intolerances/allergies either but I met with a natropath and she suggested I try a gluten free/dairy free diet for 21 days to see if that helps. Today is day 5 and I do feel less bloated and gassy and I have more energy but my stools still look the same. I also started a digestive enzyme with my meals but like you said it only contains like 6,000IU lipase and I'm not sure thats enough to help with the digestion.

I also havent had a motility test.. which is sometime to consider. What test specifically is that? the capsule endoscopy?

Also-- by the way.. an IRONMAN!? Girl, thats so impressive!!! I ran a half marathon this weekend and that's about the competitiion I can stand, ha! I did run 8:33/mile pace so I was pretty happy with that

Anyway, thanks a lot for your help! I do appreciate it!

Christine

 

Hi Christine! Unfortunately I have no way to know my fecal fat and fecal elastase numbers because the doctor that ran the tests has refused to provide me with a copy of the results despite a half-dozen written requests that she do so. I only know what she told me, which is that my fecal fat was increased and the my fecal elastase was on the low end of the normal range. I shared that information with the next GI doctor, and that was a partial basis for the diagnosis. The next GI doctor also tried, without success, to get the test results from the doctor that ordered the tests.

Have you had the SIBO test yet? I believe that SIBO may cause increased fecal fat even with normal fecal elastase levels, so perhaps that can give you some answers. I think celiac disease can also cause malabsorbtion with normal fecal elastase levels, but I imagine you've been tested for that already as well.

I had the pillcam test, and that was also used to determine motility, as well as look for a visible sign of a problem in my small intestine, but that came back completely normal.

I hope the gluten-free/dairy-free diet continues to help you. If it doesn't, another thing you may want to try is the FODMAPS diet, as if you aren't up for the full-blown elimination diet, the FODMAPs diet is another option that eliminates a lot of possible dietary triggers of GI distress, including gluten, dairy, fructose and others.

 

Hi Iron Girl-

WOW that sounds like a headache! You have the right to all of your medical records. I would be very angry if that were me! I keep a copy of every single test that I have done... along with doctors notes if I am able to obtain them.

I am having the SIBO test next week (Tuesday) and yeah, I know that can cause high fecal fat with normal fecal elastase numbers (actually crossing my fingers that I have that instead of a pancreas problem). I have been tested for celiac and also had a duodenal biopsy during my EGD both of which were negative. Okay, thanks for the info on the pillcam. I also did try FODMAPs (but only for a week) and it seemed to help but was very difficult to stick with. Maybe I will revisit that.

Thanks again for all of your help!

 

Hey guys!

What test did you get to determine fecal fat??

 

Irongirl,
I know this thread was from a few months back, but I hope your email will get pinged.
That's great that you figured everything out and that you're feeling better.
I have a very similar story to you. I'll spare you all the details and skip to the point. I Recently started taking prescription pancreatic enzymes and I think they are helping (first intervention that seems to be making a difference). How did the ID doc finally diagnose you with a tapeworm? I'm assuming you had eosinophils checked and multiple stool samples sent.
Thanks!
Merse

 

The ID doctor found the tapeworm through a blood test that she had done by the CDC. She tested me for everything that I possibly could have caught in the places to which I traveled right before getting sick, and that's how she found it.

 

Thanks Iron Girl. So, with all the tests the other 7 docs put you through, nothing ever showed that you had a parasite? Do you recall what that blood test was that the ID doc did? I've tested negative for everything so far. I've had multiple stool cultures and blood draws. My symptoms came out of no where about 9 months ago. Started noticing a change in the way I felt in December of last year and within a month I was in really bad shape. I Had taken multiple rounds of steroids for what I believe was a severe systemic reaction to poison oak (I got it 3 times in a row) just before I started to get symptoms. I'm convinced that the steroids (or the systemic reaction) triggered something in my gut. I've read that steroids can cause parasites to proliferate. I'm hoping to get to the bottom of this soon...I feel like I'm finally on the right track.

 

Hi Merse, I'm sorry I can't provide you with more detail, but unfortunately I don't know the name of the blood test that found the tapeworm. The ID doctor sent six vials of my blood to the CDC and asked them to test for every possible parasite I could have caught in the area in which I had been traveling just before getting sick, and one blood antigen test came back positive. I previously had 5 different stool tests done for parasites and none of them showed any signs of the tapeworm, which the ID doctor said isn't uncommon as many parasites can only be found with very specific and very complex tests. I hope you find some answers soon!

 

Hey Iron Girl,

What sort of side effects did you get from the enzymes? I am wondering because I want to try enzymes for a possible EPI problem. I too have severely reduced digestion, I can't eat any fat at all besides coconut oil, and yet every other source I've looked at has been a dead end.

 

Thanks iron girl. That's crazy that a tapeworm wouldn't show up in your other tests/studies. I'd like to consult an ID doc but it's difficult to get a referral with my symptoms.
Sibokid20, I haven't had any side effects from taking pancreatic enzymes. I've only been taking them for a couple of weeks. I take Pancreaze 4200 unit caps and I take about 3 with meals and 1 or 2 with snacks. Thats not a very high dose. Usually people with EPI need about 40-80k units per meal. I'm probably going to up my dose and see how it affects me. As Iron girl mentioned, they're usually tolerated pretty well (I guess not in her case though).

 

SIBOKid20,

I had different side effects from different enzymes. The creon caused me abdominal pain, bloating, severe nausea and gas (all worse then what I experienced from the SIBO while not medicated), the pertzye caused non-stop, uncontrollable coughing and caused all the skin on my arms and legs to peel off, the digaze caused horrible headaches and nausea, the zenpep caused severe pain that left me unable to walk without a severe limp and intense pain and also caused enormously large stool volume, and the ultresa caused headaches, nausea, vomiting and abdominal pain. The least-bad option for me was the perztye, and I found I could tolerate 3 a day with just moderate coughing and over time my body adjusted and I eventually worked up to 5 a day with a tolerable amount of coughing, but that wasn't enough to stop my weight loss. Overall I felt much worse while taking the enzymes then I did while not taking them, but I tend to be very sensitive to medication and my doctor said that many people are able to tolerate the enzymes without any side effects. The second GI doctor I saw prescribed Creon and then took me off it when the side effects got bad and never mentioned anything about there being other options. The third GI doctor gave me samples of five different enzymes so I could try them all to see which worked best for me.

 

Merse,

None of my doctors offered to refer me to an ID doctor even though they all knew that my symptoms began shortly after returning from a trip to a remote part of Africa. After 21 months of being sick and having no answers, I finally insisted on a referral to an ID doctor and the GI doctor said no because she insisted she would have found any sort of parasite or tapeworm from her tests, so finally my GP gave me the referral. At that point my weight loss was so pronounced that I was on the verge of meeting the standard for qualification as a medical emergency requiring drastic intervention.

 

Thanks for the information Iron Girl. Those side effects sound terrible, so sorry you had to go through that on top of everything else. I realize side effects are pretty rare, and I am taking some now to help with digestion without any, but when I first tried enzymes I had some unfavorable effects from it to the point where I didn't try anymore enzymes for a couple months. I am just hoping that isn't the case when I try prescription ones, seeing as I desperately need digestive help.

 

Hey IronGirl,

Thanks for sharing your story. I was hoping you could answer some questions because I think there are some clues in your treatment to my SIBO diagnosis (methane).

1. When you took the enzymes - how did you actually eradicate your SIBO at the same time?

2. What explanation did your doctor give you after you stopped taking the enzymes for how your own body would start producing those enzymes? Wouldn't you still have a problem producing those enzymes? Maybe not since you killed off the tapeworm?

3. I've had lots of food intolerances for many years and late last year I started taking digestive enzymes. I took them everyday for 2 months with no noticeable effect (I thought they might help me eat more sugary foods without getting acne flare ups - my digestion was fine). I went cold turkey on the enzymes in late November and right after I stopped taking them I got extremely bad symptoms of SIBO (burping after eating anything, constipation, lots of gas/flatulence); I since took the SIBO breath test and have confirmed I have methane producing SIBO. My theory is that since I went cold turkey my own body got lazy about producing enzymes and that's how I got SIBO (I took a stool test a week ago and still waiting back on results - wonder what enzymes will say). After a few weeks I was able to tolerate eating fats without any problems but a lot of my vegetables/nuts are ending up in my stool which has never happened before. Given your experience - I wonder what advice you might have for me, if any. Super appreciate your feedback!

 

Hi, im also very interested.
I have methane and hydrogen sibo.
If i do
Atrantil-methane
Berberine-hydrogen
Betaine hcl
Creon 10 000
It seems that i can keep my sibo down.
If i skip Creon,it doesnt work.
Even if its only 4 things,its so hard to figure out which one is working. It is pointing to Creon. Im taking 40 000 a day.
If i find that the cause is lack of enzymes, do I still need to kill the hydrogen and methane bacterias?
I will probably try genova diagnostics enzyme test. There interesting info about worms....

 

Hello, this is the OP here, though with a slightly different user name because I couldn't remember my password and the website wouldn't allow me to reset it, so I had to create a new account to be able to respond.

Once I killed off the tapeworm, my pancreatic enzyme levels returned to normal immediately. The tapeworm was causing a blockage in my pancreatic duct, which was causing the enzyme levels to be low. Killing the tapeworm put an end to the blockage so the enzyme levels returned to normal and I no longer needed to take the enzymes. I had to take Xifaxin to get rid of the SIBO, and even now (six years later) still have periodic SIBO flareups that require me to take Xifaxin periodically. At the outset, I was needing to take Xifaxin every 4-5 months, but over time that has improved and now (6 years post-illness) I only need to take it ever 10-12 months, and things seem to be continuing to improve for me.

I hope that you all find the answers you need to get better, and that you can find the strength to resist the strong urge to give up trying. When I was sick I hit several points of such utter frustration with the medical system that I was close to giving up on trying to find the answers. Fortunately I had a partner who didn't let me give up, and kept pushing me to ask for more tests, more specialists, new referrals, etc. In the end I got my answers, through a lot of luck but also some persistence and now I'm at least 90% better. I hope you all can find the right doctor who can give you the right answers!

 

@IronGirl , Not sure if you will see this msg , but if you do please tell us the medication you took to kill the tapeworms.