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

[grapes]

Which ones? I'm seeing several? https://smile.amazon.com/s?k=Enzymedica+digestive+enzymes.&ref=nb_sb_noss_2

 

[grapes]

According to this site, poor methylation can lead to sludgy bile and gallstones. Taurine can help to increase bile production.

Many people find they have gallbladder sludge from an ultrasound, but what they aren’t told is it is caused by the body using sugar in place of methyl groups or sulfate groups. As the sticky, sludgy bile sits day after week after month after year, it begins to inflame and damage the gallbladder. This is when bile gets dehydrated, cholesterol starts to crystalize and the dreaded gallbladder stones begin to form. Not only does this “sticky” situation prevent adequate detoxification of bile, heavy metals, hormones, drugs and other toxins we need to remove, it will eventually create disease in the organ itself.

So the way we prevent this is through optimizing methylation by increasing taurine, phosphatidylcholine, folate, B12, and TMG. Taurine is produced by the methyl cycle, and when taurine is given to rats with gallbladder sludge, their bile gets slippery again and rescues their liver from damage. The methylation genes PEMT and BHMT are found in the liver and they make choline phospholipids which are necessary to keep the bile flowing. Choline protects the liver and gallbladder against damage from the detergent action of bile and it promotes movement of cholesterol into the bile so it can be removed from the body. When we run out of choline, cholesterol and fat literally get stuck in our liver and muscles, leading to fatty liver disease and muscle damage.

You can get choline from lecithin. NOW brand makes sunflower lecithin in liquid and powder; I recommend the powder for taste. Taking lecithin with a meal can help to emulsify fats, and lecithin has many other benefits. Beware that taurine can lower blood pressure.

Interesting. I had already been on most of those as this got worse and worse. But....my b12 was clearly not being broken down for use during that time. I think I've started to reverse that. so time will tell.

Just did an ultrasound, and the gallbladder is full of bile. That blew me away. Implies to me that there's a blocked duct or sludge.

 

[kangaSue]

According to this site, poor methylation can lead to sludgy bile and gallstones. Taurine can help to increase bile production.

It can also be due to a vagus signalling defect causing a low ejection fraction so Small Fiber Neuropathy when it also affects autonomic fibers (alternatively also called Autonomic Neuropathy) can be the cause.

 

[grapes]

It can also be due to a vagus signalling defect causing a low ejection fraction so Small Fiber Neuropathy when it also affects autonomic fibers (alternatively also called Autonomic Neuropathy) can be the cause.

Here are two interesting factoids and I'll be curious if see a connection:

1) This all started after I had done a several month copper detox four years ago. i.e. I got SIBO after that detox (first in my life), and evidence shows that SIBO can be related to a gallbladder/bile problem. I just wasn't aware that I was having a gallbladder problem yet...it only three years later that it became bad with symptoms and I needed bile.

2) And the exact same thing happened to someone else I know. She did a copper detox, then found herself with SIBO. I am not in touch with her anymore to see if she got worse over time like did with the lack of bile release.

 

[HABS93]

Hope you are doing better ! I certainly pray for everyone to do better but have read alot of your post. Has excessive saliva and constant hunger symptom's of what you are going you are going through?

 

[kangaSue]

This all started after I had done a several month copper detox four years ago. i.e. I got SIBO after that detox (first in my life), and evidence shows that SIBO can be related to a gallbladder/bile problem.

I don't know anything about the possible interactions of copper detox but for sure, there is speculation that SIBO and gut bacterial balance has links to gallbladder problems.
https://www.ncbi.nlm.nih.gov/pubmed/29392773
https://www.gallbladderattack.com/blog/how-the-bugs-in-your-gut-influence-your-gallbladder/

 

[PatJ]

Which ones? I'm seeing several

Here is Enzymedica Digest, 180 capsules (which is what I use) at Vitacost.

And here is Vitacost's full list of Enzymedica digestive enzymes. They come in various quantities so you could try a 30 capsule bottle first to see if it helps.

 

[PatJ]

I've been taking NOW brand taurine powder for the past 6 days and am finally seeing dark stool for the first time in many years so I assume I'm producing a normal amount of bile again. It started working from the very first dose of 500mg.

The first dose increased the peripheral neuropathy in my right calf and foot, and left me feeling extremely relaxed and even a little sleepy. Subsequent doses haven't had nearly the same effects. I'm feeling more calm in a good (not drowsy or sedated) way now. I was worried it might lower my blood pressure, since it's too low already, but it hasn't affected it.

I'm taking 500mg 3 times per day now.

 

[grapes]

Here is Enzymedica Digest, 180 capsules (which is what I use) at Vitacost.

And here is Vitacost's full list of Enzymedica digestive enzymes. They come in various quantities so you could try a 30 capsule bottle first to see if it helps.

Just ordered it. Thanks.

 

[grapes]

BeADocToGoTo1 as I await my appointment Monday to go over the stool results, can you tell me if you had any of these before you got on Enzymes:

1) Obvious undigested food in your stool
2) Bouts with bad gas pain
3) Diarrhea here or there
4) Repulsion to some foods
5) Bouts of nausea

 

[BeADocToGoTo1]

BeADocToGoTo1 as I await my appointment Monday to go over the stool results, can you tell me if you had any of these before you got on Enzymes:

1) Obvious undigested food in your stool
2) Bouts with bad gas pain
3) Diarrhea here or there
4) Repulsion to some foods
5) Bouts of nausea

Yes to all and many more.

How did your apt go?

 

[grapes]

Yes to all and many more.

How did your apt go?

Glad you asked as I haven't gotten over here yet. From the results of the stool test, I do not have pancreatic insufficiency, nor do I have parasites. What WAS revealed is that I have an "intermediate" result showing I'm not breaking down carbs well, which could definitely be negatively affecting my energy levels. So that alone reveals I do need enzymes...just not as much you need BeADocToGoTo1.

I also have a "few" result for candida. I've been working hard to get candida downas it was quite high over the past year and even in January. By May, all was fully down except for Arabinose--the latter used to be 76, got it down to 50, and need to get it below 29. I also totally eradicated high aspergillus. So it's a success. I tend to have terrible die off, so it goes slow.

Finally, I have high levels of the bacteria Klebsiella oxytoca, in spite of good levels of other good bacteria. The recommended treatment is Uva Ursi, Grapefruit Seed Extract or Silver. The page about this bacteria says it's asymptomatic and the treatment is often unnecessary. That surprised me. So if true, I won't treat it and will keep my good bacteria up.

 

[grapes]

I also still have problems with nausea here or there after breakfast, which is only relieved with the runs. But I finally have narrowed down the possible cause: something I'm taking in my supplements after breakfast. I lean to believe there are a few I don't need anymore and taking them has caused this. Suspects are zinc at the top of the culprit list, but I've not crossed out B5 (will lower it), l-carnitine (my levels were getting high, so a possibility I don't need it anymore) and arginine (it was recommended on a 2015 and 2016 OAT and probably don't it anymore either.)

 

[BeADocToGoTo1]

I also still have problems with nausea here or there after breakfast, which is only relieved with the runs. But I finally have narrowed down the possible cause: something I'm taking in my supplements after breakfast. I lean to believe there are a few I don't need anymore and taking them has caused this. Suspects are zinc at the top of the culprit list, but I've not crossed out B5 (will lower it), l-carnitine (my levels were getting high, so a possibility I don't need it anymore) and arginine (it was recommended on a 2015 and 2016 OAT and probably don't it anymore either.)

Too much supplementation can certainly cause issues, especially if you are not deficient. Zinc and carnitine absolutely can cause stomach, intestinal and nausea issues. When I do take zinc (rare now), it is always with a meal as that will make me nauseous 100% of the time if not on a full stomach. I use Zinc Tally liquid from Metagenics sporadically to get an indication of zinc levels. Certain capsules can also cause intestinal issues I have noticed.

It might be worth cycling off all supplements for a bit. Then re-introduce some enzymes only and see whether that still causes you the impact you saw before.

I will regularly drop all supplements for a week or two except for Creon. I will reintroduce supplements one at a time, and most I just use sporadically.

Curious which test showed you that you are not breaking down carbs. What was the elastase level if I may ask?

 

[grapes]

Too much supplementation can certainly cause issues, especially if you are not deficient. Zinc and carnitine absolutely can cause stomach, intestinal and nausea issues. When I do take zinc (rare now), it is always with a meal as that will make me nauseous 100% of the time if not on a full stomach. I use Zinc Tally liquid from Metagenics sporadically to get an indication of zinc levels. Certain capsules can also cause intestinal issues I have noticed.

It might be worth cycling off all supplements for a bit. Then re-introduce some enzymes only and see whether that still causes you the impact you saw before.

I will regularly drop all supplements for a week or two except for Creon. I will reintroduce supplements one at a time, and most I just use sporadically.

Curious which test showed you that you are not breaking down carbs. What was the elastase level if I may ask?

Today is my 3rd full day without supps, and I only plan in restarting a couple I think I need, such as CoQ10, and stay off the rest for awhile. I agree about l-carnitine. As far as zinc, I did the liquid zinc test. .

The test I did was Doctor's Data Comprehensive Stool Analysis/Parsitology x1. My 2015 OAT test also said I wasn't breaking down carbs correctly. But the 2016 and 2018 Great Plains disagreed, saying it was Fatty acids I wasn't breaking down correctly. But that was due to not releasing enough bile, which I am now on. The latest OAT said all is well in those areas now.

Today I did the liquid zinc test. The first second or two, it tasted like water, but it quickly turned into a taste and a strange feeling on the tongue. That taste stayed with me the next hour until I drowned it out with my sweetened chicory drink. Nothing extreme, but obvious.

 

[BeADocToGoTo1]

Today is my 3rd full day without supps, and I only plan in restarting a couple I think I need, such as CoQ10, and stay off the rest for awhile. I agree about l-carnitine. As far as zinc, I did the liquid zinc test. .

The test I did was Doctor's Data Comprehensive Stool Analysis/Parsitology x1. My 2015 OAT test also said I wasn't breaking down carbs correctly. But the 2016 and 2018 Great Plains disagreed, saying it was Fatty acids I wasn't breaking down correctly. But that was due to not releasing enough bile, which I am now on. The latest OAT said all is well in those areas now.

Today I did the liquid zinc test. The first second or two, it tasted like water, but it quickly turned into a taste and a strange feeling on the tongue. That taste stayed with me the next hour until I drowned it out with my sweetened chicory drink. Nothing extreme, but obvious.

Hope it will provide you some relief !

Doctor's Data is a test I did a while back too. My elastase was just a smidge under that 200 level when I was bedridden and at my worst. Carbs never showed up as an issue on that test. I am about to do another pancreatic elastase stool test (does not get affected by enzyme supplements) with Quest to see if there has been any change. Also asked for a chymotrypsin stool test as I am curious how much it shows, more as an indication whether I am taking enough Creon.

 

[grapes]

Hope it will provide you some relief !

I crashed yesterday after doing a lot of activity. Five years now of doing this, off and on. It's crazy, as I have plenty of energy to do what I'm doing and feel great, then it's like bam...I fall off a cliff that you didn't see steps ahead. Major physical fatigue that will last for days. The below visual is how it is...Could failing to break down carbs correctly do this?

It's very much like gas in a car...if you didn't have a gas gauge, you wouldn't even know you are running out, as you can still go a certain speed...until the gas does suddenly run out and the car just stops. Describe this to a T.

So I was relooking at the info from my stool test. Now though it said I don't have pancreatic insufficiency, i.e. Elastase >500 (desired result >200)....it clearly points out I'm not breaking down carbs/sugars well. I'm in the intermediate levels between normal and abnormal. I find it odd to 'only' not break down carbs/sugar.

It then says "Enzyme insufficiency is typically associated with flattening or disruption of the intestinal brush border cells as occurs with gastrointestinal infections (including viruses), Celiac or Crohn’s diseases or short bowel syndrome." I don't have evidence of any of the latter conditions.

So I'm wondering again if the fact that I'm not breaking down carbs well is the answer to my crashing. Now as far as those pancreatic enzymes, I've been on them off and on for months, yet I get this Intermediate result of carbs in my stool. I am back on Amy Meyer's Digestive Enzymes because her enzymes for carbs/sugars are higher than others I've seen. See below.

I've been on one of her caps, but decided to go up to the recommended TWO, which I did this morning at the start of breakfast, but I added one more at the end. I'm going to be curious if this is the cause of my crashes.

 

[BeADocToGoTo1]

I remember reading the book by Dr Myhill about the pacing we need to do. If you 'borrow' energy during some days by overdoing it, even if it may not feel so at the time, you will pay it back with interest on the next days. Which I found very true. When you get a little burst you get so excited you finally get to do something healthy people view as a normal activity. And then you get punished. I still have to pace, and will likely have to the rest of my life.

One thing I cannot remember if we talked about is diet. Apologies if you already mentioned it.

But, just in case it provides some food for thought, I will copy something I wrote on another thread here regarding food intake and some tests to consider.

Important Measurements (all before breaking fast)

1. A1c. "Low" carb means something slightly different for everyone, but if your A1c is too high (5.3% or higher) you should try to lower carb intake as it can indicate excess sugar or carb intake. Your cells are likely being damaged (glycation) at this level. 5.7% is the official pre-diabetes number. It is a great simple indicator of excess carb intake

2. Triglycerides. If your triglycerides are high (<100 mg/dL is optimal) you should try to lower your carb intake as your liver is transforming excess into energy storage. Another indicator of excess carb intake.

3. Ketones. I also track my blood ketones to be in nutritional ketosis (0.5-3mmol), which is another great indicator of diet quality. I never go to extremes and never add exogenous ketone salts either.

4. Insulin. Higher than 5 uIU/mL is an indicator of too high carb/sugar intake and/or start of insulin resistance

5. Blood glucose. <100 mg/dL is the expected norm, but <85 is better for longevity and health.

Primal Food

You have to almost be a dietician to eat healthily. So many pitfalls and marketing bs. We have gone so far from what is normal for our DNA. We have lost common sense on what is a healthy amount of carbs per meal and per day. And even soil and vegetables are losing nutrient density, not to mention all the herbicides and pesticides. That is why I like the primal lifestyle that Mark Sisson brought to mainstream and was key in my healing. I dedicated a whole chapter to it because it was so crucial. It is what my grandparents would have just called food. :

• As little processed, packaged, canned, non-organic as possible
• Avoid toxins where possible: preservatives, additivies, coloring, food glue, flavoring, chemicals, herbicides, pesticides, plastic chemical leaching, etc.
• Many types and colors of vegetables, preferably local organic
• Healthy proteins: happy pastured chickens, grass fed beef, non-farmed fish, hemp, etc.
• Healthy fats: nuts, olive oil, seeds, grass fed butter, fish, avocado, etc.. High fat dairy in moderation with grass fed and full fat preferred, unsweetened of course, aged and fermented also good options.
• Avoid unhealthy, highly processed, partially hydrogenated GMO oils (canola, corn, soy, etc.) and trans-fats. This is used almost everywhere these days: restaurants, cafes, processed food, condiments, etc.
• I do not drink any calories (just unsweetened tea, coffee and water), except the occasional bone broth.
• Regarding starches, potato, rice, legumes, pasta, grains, cereals, bread, the quality is extremely important and in very limited amounts. Organic (to avoid more glyphosate exposure), whole grain (the germ has micronutrients, the husk has fiber) wheat only, and only if you do not have any gluten sensitivity issues.
• Real fresh fruit limited and more seen as a treat, but never liquid, dried, processed, preserved, canned. It was a seasonal thing even when I grew up. Some berries, perhaps a kiwi or 1/2 banana, but not every day. Avocado is an exception as it is low sugar and high healthy fat.

 

[grapes]

Wow, I so identified with this: "If you 'borrow' energy during some days by overdoing it, even if it may not feel so at the time, you will pay it back with interest on the next days. Which I found very true. When you get a little burst you get so excited you finally get to do something healthy people view as a normal activity. And then you get punished."

I guess I have to see the bright side here. I can do a lot of moderate activities without issue--some housework, go up and down stairs, go to restaurants, events, a certain amount of yardwork, some shopping. But, I clearly canNOT do extended vacation-type excursions or heavy hours of work.

Speaking of my newly discovered carb malabsorption...I was looking at a graphic of the different kinds of carbs. What struck me is that I've never done well with the POLYOLS--very uncomfortable symptoms. Only realized about two years ago that I HAVE to take digestive enzymes with those. But never took them with anything else. . But I've never had noticeable issue with the rest of the carb classifications.

Yet as I think on this, when I say that crashes feel like I've "run out of something"...what I think I run out of is glycogen, the storage form of carbs. And that could be because I'm not breaking down carbs well, even those beyond polyols. Just a theory at the moment, but it looks like I need to be VERY conscientious of taking digestive enzymes with amylase for any and every food I eat, and not go long periods without some kind of carbs with digestive enzymes, either, especially when doing something a little more vigorous than usual.

 

[BeADocToGoTo1]

FODMAP

@grapes
If you have not already, you can look at FODMAP lists of foods to try and experiment with excluding since you mentioned polyols. They also occur naturally in some food, not just in the chemical soup you had listed that we should be avoiding anyway. Also, please be careful with restaurant food. Most restaurants will cause me days of problems (crashes, intestinal issues, malaise, bodyache, fatigue) due to the ingredients used, so I try to mostly avoid them. Have you noticed a link between what and where you eat and crashes?

@PatJ had a good post with a link about FODMAP here:

https://forums.phoenixrising.me/thr...-to-naturally-help-advice.75310/#post-2184157

Glycogen

Regarding glycogen storage. There is a direct link with the pancreas and liver there. Glucagon is the hormone produced by the pancreas that signals the liver to release stored glycogen and convert it into glucose. This again ties into giving your pancreas a rest from excess carbs and sugars.

If you notice that your energy levels are very closely tied with carb intake or cravings, or if you get hangry, or are constantly grazing/snacking, or if you have swings into hypoglycemia please see this as a signal from your body. You might want to consider a glucose and ketone blood meter to see the direct result of food and drink on the levels and how you feel.

It is better not to have glycogen stores topped up, as this means you are taking in too many carbs, which will then cause insulin spikes as well. Your body works very hard to not have too much glucose (or too little) in the blood as it will be damaging. It is better for overall health to be in nutritional (light) ketosis, where you are an efficient adipose fat burner, and not constantly craving carbs to function or not crash. Both the pancreatic hormones insulin and glucagon will stop ketone production so that the body uses up excess glucose first. If you have to snack at night or cannot comfortably delay or skip breakfast it is likely your carb intake is too high.