Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

[Pyrrhus]

I just realized that since the vagus nerve controls pancreatic secretion of digestive enzymes, dysautonomia could be one explanation for Exocrine Pancreatic Insufficiency (EPI) in ME.

I wonder how common EPI is in ME.

I also wonder what the downstream effects of long-term poor nutrient absorption might be...

 

[BeADocToGoTo1]

@Pyrrhus Thanks for the diagram and the note. I have wondered that too, or for that matter any form of malabsorption or other underlying causes of nutrient deficiencies. The impact of nutrient deficiencies is huge on the functioning of any and all metabolic pathways, and the symptoms can therefore be extremely varied from person to person.

My personal pathway to nutrient deficiencies and subsequent dozens of downstream effects just happened to be exocrine pancreatic insufficiency (EPI), but also SIBO and yeast overgrowth had an effect. I was a perfect petri dish for showing how wide a range of seemingly disconnected symptoms you can get from nutrient deficiencies. That is why I shared my findings and always like to point people to performing nutrient testing, such as the organic acid tests, etc. and other tests that I had done to rule out certain things in the path to discovery.

 

[Replenished]

Can I ask what your stools were like? I may have missed it in the thread somewhere but didn't see it on the initial pages.

I'm wondering if I may have something similar going on. I feel so utterly depleted, deficient, like the tank is empty of fuel, more so than general fatigue and I'm sure I'm somehow not getting the nutrition I need.

My stools are light clay coloured and always float so I'm suspecting a lack of bile but from reading this thread EPI also sounds like a possibility.

Tried to mention it to my doctor yesterday but they didn't really entertain the idea.

 

[BeADocToGoTo1]

Can I ask what your stools were like? I may have missed it in the thread somewhere but didn't see it on the initial pages.

I'm wondering if I may have something similar going on. I feel so utterly depleted, deficient, like the tank is empty of fuel, more so than general fatigue and I'm sure I'm somehow not getting the nutrition I need.

My stools are light clay coloured and always float so I'm suspecting a lack of bile but from reading this thread EPI also sounds like a possibility.

Tried to mention it to my doctor yesterday but they didn't really entertain the idea.

Hi @Replenished

Never a pleasant topic of discussion, but such an important one. It is sad that doctors, even many gastroenterologists, and especially most family practice doctors completely ignore the importance of stool tests and a detailed discussion around it. I took pictures with me to my gastro.

Things to look for in stool are color that is not brown, and consistency. For example, if it is soft and/or sticky on the toilet. Is it yellowish at all? Does it smell more pungent than normal. Are there undigested bits in it? Is it stringy? Are there slimey threads on the sides? You may notice symptoms such having to wipe more, having to go more than 1-2 times per day, a feeling of not satisfactorily done on the toilet, as if there is more coming. A general intestinal discomfort, bloating, along with nutrient deficiencies are also things I had. That does not mean you have to have all those symptoms, nor consistently all the time, to have insufficient bile or pancreatic enzyme production.

Liver, gallbladder, pancreas, food sensitivities or allergies, are all things to look into.

These two tests are super standard, and relatively cheap:

• Stool test pancreatic elastase

The results of stool elastase should of be shown in micro gram/mL. But it still is not a completely accurate test and can be a bit finicky.

• Stool test: fecal fat level

Regarding stool fecal lipids, it might be worth doing a 24hr (what I did) or 72hr one. It will show in grams per 24 hours.

The MRI with MRCP test of the abdomen looks at liver, gallbladder, pancreas, intestines, and provides a 3D map of ducts, was a great one. However, since this is pricier, doctors and insurances will be more reluctant with this one.

This one might be intesting as well, that is often used by veterinarians (they seem to be far more advanced on anything EPI than most human docs):

• Blood test fasting trypsin (to see if you produce enough enzyme for protein breakdown)

These tests were also very helpful but not covered by my insurance:

• Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology, Fecal Fat Distribution, Elastase and Chymotrypsin.
• Genova Diagnostics - FMV

Here is another thread that may be of interest if you have not already seen it.

https://forums.phoenixrising.me/threads/pale-stool-and-bile-salts.79969/#post-2308443

From another thread:

Fat in stool, pale yellow, sticky stool are all not normal and point in the direction of not digesting food properly. This in turn will cause nutrient deficiencies, which in turn can have CFS type symptoms.

Many doctors have no clue how to properly test for it, nor help sufferers holistically even after diagnosis. When the pancreas is not making enough enzymes to break down fat, carbs and protein it is not immediately apparent. Only when it is 90% impaired are many doctors willing to give it a diagnosis of exocrine pancreatic insufficiency (EPI). Which is ludicrous, as you will lose out on nutrients for the proper functioning of all your metabolic pathways, on far less of a percentage. It can be a slow decline, with many doctors scratching their heads as to the root cause of your symptoms.

Some gastroenterologists, like Steven D Freedman, do understand. He will even prescribe pancrelipase (contains pancreatic enzymes including amylase, protease and lipase) as a way to diagnose. If it helps reduce the symptoms....It can not hurt to try.

You can also experiment with Ox Bile supplement. Both Pancrelipase and Ox Bile must be taken with the meals in order to have effect.

Hope that helps a bit.

 

[Replenished]

Hi @Replenished

Never a pleasant topic of discussion, but such an important one. It is sad that doctors, even many gastroenterologists, and especially most family practice doctors completely ignore the importance of stool tests and a detailed discussion around it. I took pictures with me to my gastro.

Things to look for in stool are color that is not brown, and consistency. For example, if it is soft and/or sticky on the toilet. Is it yellowish at all? Does it smell more pungent than normal. Are there undigested bits in it? Is it stringy? Are there slimey threads on the sides? You may notice symptoms such having to wipe more, having to go more than 1-2 times per day, a feeling of not satisfactorily done on the toilet, as if there is more coming. A general intestinal discomfort, bloating, along with nutrient deficiencies are also things I had. That does not mean you have to have all those symptoms, nor consistently all the time, to have insufficient bile or pancreatic enzyme production.

Liver, gallbladder, pancreas, food sensitivities or allergies, are all things to look into.

These two tests are super standard, and relatively cheap:

• Stool test pancreatic elastase

The results of stool elastase should of be shown in micro gram/mL. But it still is not a completely accurate test and can be a bit finicky.

• Stool test: fecal fat level

Regarding stool fecal lipids, it might be worth doing a 24hr (what I did) or 72hr one. It will show in grams per 24 hours.

The MRI with MRCP test of the abdomen looks at liver, gallbladder, pancreas, intestines, and provides a 3D map of ducts, was a great one. However, since this is pricier, doctors and insurances will be more reluctant with this one.

This one might be intesting as well, that is often used by veterinarians (they seem to be far more advanced on anything EPI than most human docs):

• Blood test fasting trypsin (to see if you produce enough enzyme for protein breakdown)

These tests were also very helpful but not covered by my insurance:

• Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology, Fecal Fat Distribution, Elastase and Chymotrypsin.
• Genova Diagnostics - FMV

Here is another thread that may be of interest if you have not already seen it.

https://forums.phoenixrising.me/threads/pale-stool-and-bile-salts.79969/#post-2308443

From another thread:

Fat in stool, pale yellow, sticky stool are all not normal and point in the direction of not digesting food properly. This in turn will cause nutrient deficiencies, which in turn can have CFS type symptoms.

Many doctors have no clue how to properly test for it, nor help sufferers holistically even after diagnosis. When the pancreas is not making enough enzymes to break down fat, carbs and protein it is not immediately apparent. Only when it is 90% impaired are many doctors willing to give it a diagnosis of exocrine pancreatic insufficiency (EPI). Which is ludicrous, as you will lose out on nutrients for the proper functioning of all your metabolic pathways, on far less of a percentage. It can be a slow decline, with many doctors scratching their heads as to the root cause of your symptoms.

Some gastroenterologists, like Steven D Freedman, do understand. He will even prescribe pancrelipase (contains pancreatic enzymes including amylase, protease and lipase) as a way to diagnose. If it helps reduce the symptoms....It can not hurt to try.

You can also experiment with Ox Bile supplement. Both Pancrelipase and Ox Bile must be taken with the meals in order to have effect.

Hope that helps a bit.

Thank you. The thing is I had the Genova stool test some months back and it suggested I have normal Pancreatic Elastase and normal fecal fat. Yet my stools are always greasy, float and are a pale clay colour. The stool test was some months ago now and i'm trying to recall if my stools were this way at the time. I've certainly had floating stools since when my health issues started around 5 years ago and I should have payed more attention to it. But more recently my symptoms have been much worse in terms of feeling deficient/depleted and that has coincided with stools being lighter colour. I think when I did the stool test I possibly had a period where my stools weren't as bad. I do get these once every few months. Either that or perhaps the test was inaccurate.

My Cholesterol in the stool actually was on the verge of being low. Could this have any implications? The reason I ask, and one of the added reasons I suspect there may be a bile, Pancreas, liver issue is that my blood cholesterol is very high, despite me not being overweight. I thought this would be a contradiction if I do have a fat digestion/absorption problem. I then read on a post elsewhere "Cholestasis - a.k.a poor bile flow - and high cholesterol go hand in hand because the liver can't get rid of excess cholesterol via dumping bile into the GI tract (bile acids are made from cholesterol)"....this would again match up with my symptoms.

And one final thing to note. I ordered some 'green vibrance', a supplement I used to take but haven't for years. I took the first dose of it yesterday in the morning. By the afternoon evening I was feeling far less depleted than I have done in months and even had a little energy. I'm not one for placebo as I've taken a ton of supplements, none of which have done anything to this point and I certainly don't think Green Vibrance could correct a deficiency in one dose but I read the ingredients based on me feeling a bit better and low and behold it contains amylase, lipase etc. This may be very small doses? I don't know, but again leads me to think I might be on the right track here. I'll put the screenshot of the nutrition of the supplement below.

I've also attached my stool test if there might be anything of note on there. Although again maybe my stools weren't as bad in that snapshot of time.

Sorry, not to hijack your thread. I'll leave it at that on my stuff but thank you very much for sharing your story. I have hope it may help me and I'm sure it will help many others.

 

[Pyrrhus]

I just realized that since the vagus nerve controls pancreatic secretion of digestive enzymes, dysautonomia could be one explanation for Exocrine Pancreatic Insufficiency (EPI) in ME.

And now I realize that since the vagus nerve also controls the Sphincter of Oddi, which releases both pancreatic enzymes as well as bile into the intestine, dysautonomia could be one explanation for lack of both pancreatic enzymes as well as bile.

Similar to the rest of the gastrointestinal tract control of sphincter of Oddi motility is complex and involves both neural and hormonal pathways. Immunohistochemical studies have identified a wealth of neuronal circuitry in the region of the sphincter of Oddi. The roles of the many neurotransmitters that have been identified largely remain obscure.
[...]
[Vagus nerve] stimulation induces sphincter contraction. After administration of sympathetic blockers and atropine, vagal stimulation relaxes the sphincter suggesting a non-cholinergic non-adrenergic effect. These results indicate that [vagus nerve] innervation to the sphincter is mainly excitatory; however, there exists an underlying inhibitory action via non-cholinergic non-adrenergic nerves.

Source: https://onlinelibrary.wiley.com/doi/10.1111/j.1440-1746.2009.06072.x

 

[motorhead]

turns out that was due to the need for bile. Taking the latter pushed them all back down for awhile.

How do you take bile? seen this mentioned several times in this thread by you.

I've just finished reading the whole 11 pages, op states remove insults to the body like a dozen times, eventually this boils down to eating fresh food and avoid harmful chemicals, glyphosate etc.
I thought this was well established common sense, not trying to be negative as there's a few interesting links posted but I could sum this up with Creon helped my CFS, I guess Edward Howell had a point after all?
Plus there's indication of taking SIBO tests, possibly take antibiotics and follow the FODMAP diet which is a rabbit hole I'd advice people to do their own research on before going down that path. Hint: that may not be a good idea.
Apologies again as I know this comes off as confrontational, not really my intention.
Creon seems available in my country so I too can give that a try.

 

[Replenished]

Is it possible to have normal Amylase and lipase blood results, yet have an insufficient amount produced in the gut for digestion?

 

[Replenished]

I hope this might be of some hope to some reading this thread; Through some of the advice on this thread and elsewhere, I have been taking a supplement with pancreatic/digestive enzymes and also bile salts (bile acid factors) before each meal for a few weeks now and my energy has improved massively. I've gone from being at the worst energy levels of my life a in a month or so ago, to actually being able to go on long walks again and doing some light workouts. My stools still float so maybe there's still some fat absorption issue there, but my stools are less clay like and darker in colour now.

I've read of some people taking Creon with success and I think I may try and get some. With strong pancreatic enzyme medication such as this, would it cause the body to stop producing it's own enzymes? Obviously mine seem to be lacking anyway, but i'm wondering if I take such a medication I will become dependent on it for any digestive enzymes due to pancreas stopping producing the enzymes over time? Or does it not work like that?

 

[Pyrrhus]

Through some of the advice on this thread and elsewhere, I have been taking a supplement with pancreatic/digestive enzymes and also bile salts (bile acid factors) before each meal for a few weeks now and my energy has improved massively.

That's great!

Apparently you had some form of malnutrition. I wonder how many other people out there might benefit?

 

[motorhead]

Thanks for the feedback @Replenished

 

[motorhead]

I've been on Creon for a few days now at around 60.000 U. lipase, no improvments whatsoever. (I didn't get my pancreas tested in case someone is wondering)
Another thing that did absolutely nothing to me.

 

[BeADocToGoTo1]

Hi @motorhead
Sorry if I missed your post where you mentioned your symptoms. Pancrelipase, such as Creon or Pancreaze, are not a painkiller type of medicine with immediate relief. Depending on the symptoms and the body's state it can take a while to turn things around. That is, of course, assuming you have trouble digesting food due to a lack of pancreatic enzymes. This is worth testing if it concerns you. A stool test would be a good place to start. I am not as active in the forums as I used to be, but I always try to help where I can. If you are willing to share, either here or as a private message...

It took me many months of multiple actions to turn things around and even see a glimmer of an improvement. It included things such as stopping as many insults as I could think of, changing my diet, pancrelipase (consistently, at the right quantity and at the right time - this was crucial and a tough lesson to learn the hard way), rebalancing my gut bacteria and yeast overgrowths, testing for nutrient deficiencies, start to get nutrients into my body through pancrelipase regiment, better food digestion and supplements. It was a lengthy and painful road for me.

 

[motorhead]

Hi @BeADocToGoTo1 , willing to share what? sorry you lost me a bit there, anyways I've no problem sharing my tests and what not, there's plenty in other threads.
I wasn't seeking pain-killers-like immediate relief but improvement over the weeks, which hasn't happened.
It could very well be that there's nothing wrong with pancreas as I didn't test it, like indicated in the previous post.
I've no doubt that 'removing insults' would make my condition better or even get total remission, I gurantee you that if I were to move to a pacific island eating only green coconuts I'd be healed from cfs in weeks without even needing to read a single word more on the subject.
Unfortunately we've to work with what we've, in my case very little in terms of finances, and keep this trial and error going till we've strength to do so.

 

[cheeseater]

New to group. I have had very good success with my horrible GI symptoms since starting PERT. Looks like I am the only one here on Rx Zenpep. 30,000 pill with meals and 10,000 pill with snacks. So I average around a total of 120,000 total per day. Note that my GI Dr. titrated me slowly, and these amounts have taken 3 months to build up. I started out much lower. I was in the "severe deficiency" level of fecal elastase-- (FE1). Overall the GI issues are a whole lot better, but still have occasional bad days. One of the things I found interesting reading through all the PERT (pancreatic enzyme replacment therapy) is the things they mention you can try to eat if you find yourself having forgotten your pills. For instance they suggest fruit or dried fruit and nuts as well as canned pears. One seemingly odd thing them mention is to avoid a lot of fiber. As in-- do not take supplemental fiber. I actually found this group when searching for EPI forum groups. Appears none exist. I cannot say my other more typical CFS symptoms are any better, but my GI symtpoms sure are.

 

[BeADocToGoTo1]

@cheeseater Thank you for sharing. Welcome to the group. We all try to share and help where we can.

It also took me a while to dial in the quantities of pancrelipase and know how much to take for what type of meal. I am now using Pancreaze instead of Creon due to insurance changes, but it contains the same life-saving ingredients.

Even after the diagnosis, and using PERT, it took my body a long time to slowly turn the ship around. So many deficiencies that had created so many downstream symptoms that all needed to be healed, and it took time. I used the Genova Diagnostics FMV as one of the tests to track my nutrient deficiencies over time, and the last one was nicely balanced. Also, the many symptom improvements were a good indication that instead of cannibalizing, my body was actually using nutrients coming in through food again.

Hope you continue on your journey of improvements.

 

[cheeseater]

My experience with EPI are quite similar to hmlog and absolutely no apparent cause, despite being the lowest FE1 that my GI MD had ever seen in practice (70). I never had greasy/oil stools, but I did have constant loose stools but very rarely diarrhea. I was about 20 lbs overweight for years and was constantly trying to eat less and exercise but that 20 lbs just would not come off. Then about 8 months before the EPI diagnosis I noticed the weight was melting off through nothing special I was doing. Finally at one point I noticed some mucus in the stool and reported that to MD along with a 25lb weight loss, and I was then referred to GI MD who ordered all the stool tests including FE1. FE1 was the only abnormal stool test result.

 

[bad1080]

i just started PERTs, after dire fecal elastase results. took my first dose of 40k units with my supper yesterday and woke up feeling notably better today.
today i took 40k each for my breakfast and lunch but afterwards i felt really sleepy (slept 1.5h after each meal). now i have a headache and can hardly concentrate, i also feel too hot but my body temperature is normal (36.4°C).
i suspect my elastase was low for at least a year (probably longer) but nobody knows for sure.

could this be like a startup reaction where stuff gets going again and you feel worse for a bit?
how do you know you are on the right dosage?
can you draw any conclusions from the measured elastase value to the amount of pert you should take?

TIA!