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

grapes

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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.
I haven't noticed any issue with restaurant foods. But that's a good idea on your part to explore foods with natural polyols. I see that cherries are high, and I do notice that if I eat too many "dried" cherries (no sugar added) in my yogurt, I have a problem. Now I get why!!

But right now, I'm focused on my extreme crashes which are awful and take many days to recover from. 3 1/2 years of these crashes, yet I suspect there was something going on in 2015, as detoxing heavy metals made me far more tired than I saw others get from detoxing. I can't predict these extreme crashes...and just as you said, we want to be like normal people around us, and when I try to be and do have the energy to be like them, I very suddenly cross the line and crash like glass on cement...all while everyone around me continues with their energy.

And since my stool test was very clear that I don't have exocrine pancreatic insufficiency, I can't imagine that my pancreas is releasing everything but amylase.

I'm doing some reading now about glycogen and the liver. I do eat too many sugars here or there, as I crave them in the afternoons--luckily not at all in the mornings or early afternoons. Long family history with sugar, to my detriment. All my dad's side had diabetes, but only when they were fat. I'm not fat at all. Yet, I do wonder if there is a connection to these extreme and sudden crashes--to have plenty of energy to do things, then the sudden and extreme crash. I need to find that connection. Does my insulin spike when I'm having energy to do things, thus the crash in my glucose or glycogen?? hmmm.

The crazy part of this is that in 2017, I was eating peanut M&M's on a 3 mile round trip hike--a hike which followed a half-mile exploration, and had NO crash whatsoever. It was a total experiment back then. But I've not been able to replicate that success. I've had many bad crashes since then. There are clues in all this, and I can't figure them out.

As far as light ketosis, I am in fact in that state. An Organic Acids Test I did in may showed two slightly high levels (out of six others that were fine), but their recommendation was l-carnitine. A few months ago, all eight levels were high, but turns out that was due to the need for bile. Taking the latter pushed them all back down for awhile.
 

grapes

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I've been researching glycogen depletion and found this interesting. I don't yet know why I would deplete it so easily, but the part about sucrose/glucose reminds me of eating those peanut M&M's during that 3 mile hike with no crashing whatsoever....
GLYCOGEN DEPLETION SUMMARY screen shot.jpg
 

kangaSue

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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.
I think I mentioned it earlier on in this thread that there are a number of Lysosomal Storage Diseases that can also be a part of having malabsorption problems. Lysosomal enzymes help with breakdown of proteins, carbohydrates, fats, and other substances.
 

BeADocToGoTo1

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This article by Cort on HealthRising might interest you. It's about a researcher's conception of ME/CFS and glycolysis problems. "McGregor, then, believes that problems with glucose metabolism are at the core of what is happening in ME/CFS."
Thank you. It would not surprise me if for some (many?) the excess carb impact starts even before birth, as epi-genetics settings and microbiome health impacts are passed down to the next generation. Then the baby bottle formula feeding, packaged baby foods, followed by the standard extreme carb, sugary breakfasts, horrid school lunches and snacks and juices that are fed to kids and it sets us up for disaster.

The glycation of our cells is a chronic thing and the damage accumulates due to chronic excess carbs. It is why I wonder whether one of the standard things to try for anyone with ME/CFS symptoms would be to get into nutritional ketosis (nothing extreme mind you) and bring down the insulin levels, systemic inflammation and glycation levels in the body. Candida, SIBO, pancreas damage, glucose metabolism and many more are all a direct cause of excess carbs/sugar. And in my case ME/CFS absolutely had a root cause in chronic excess carbs.

What we eat and drink are also one of the very few things we have control over, so it is a no-brainer for those wanting to try to improve their quality of life a bit to tackle as soon as possible.
 
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BeADocToGoTo1

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I haven't noticed any issue with restaurant foods. But that's a good idea on your part to explore foods with natural polyols.
Similar to figuring out food sensitivities is to do a reset where you stop for a few months and slowly re-introduce one at a time to feel the impact. The same thing you can do with restaurants. Quit them completely for 2-3 months and then observe how you feel before re-introducing one to see the impact. I cannot stress enough how terrible for our health most restaurant food is these days with the insane amounts of sugar, trans fats, partially hydrogenated GMO oils (canola, soy, corn), high carbs, antibiotics meat and veggies and cheap unhealthy ingredients that are used. It is 'ok' when you are healthy and your body can handle the insults once in a while, but when you are unwell or battling something it is best to be extremely cautious, or better yet, avoid.

I do eat too many sugars here or there, as I crave them in the afternoons--luckily not at all in the mornings or early afternoons. Long family history with sugar, to my detriment. All my dad's side had diabetes, but only when they were fat. I'm not fat at all.
It is a dangerous misconception that you have to be overweight to get glucose, insulin or insulin resistance related issues! Sugar cravings are a clear signal, and not to be taken lightly. Since it runs in the family you have to be extra careful. They were likely pre-diabetic for a long time before symptoms started kicking in. I had hypo episodes and massive spikes because my glucose metabolism was so completely out of balance, and it took a long time of strict food to calm it down. I would crash the whole afternoon after getting lunch at a restaurant, for example. I did not understand it at the time, but I do know now.

As far as light ketosis, I am in fact in that state.
How do you know this? What is your blood ketone level (urine or breath tests are not accurate) before breaking fast?
 
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grapes

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This article by Cort on HealthRising might interest you. It's about a researcher's conception of ME/CFS and glycolysis problems. "McGregor, then, believes that problems with glucose metabolism are at the core of what is happening in ME/CFS."
THAT is interesting. And with an "intermediate" level of carbs in my stools, it fits. And I DID find myself wondering yesterday if my supposition about me depleting glycogen so fast might be relatable to others on this forum. What if...
 

grapes

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It is a dangerous misconception that you have to be overweight to get glucose, insulin or insulin resistance related issues! Sugar cravings are a clear signal, and not to be taken lightly. Since it runs in the family you have to be extra careful. They were likely pre-diabetic for a long time before symptoms started kicking in. I had hypo episodes and massive spikes because my glucose metabolism was so completely out of balance, and it took a long time of strict food to calm it down. I would crash the whole afternoon after getting lunch at a restaurant, for example. I did not understand it at the time, but I do know now.

How do you know this? What is your blood ketone level (urine or breath tests are not accurate) before breaking fast?
Oh I know. My husband is a thin man and ended up with diabetes. I was just stating what was observed on my Dad's side...that only when they were fat did the diabetes show up. You are correct about pre-diabetic and I am convinced I need to be vigilant and stop my sugar eating in spite of afternoon cravings.

As far as my comment about ketosis...let me explain better. My May OAT by Great Plains showed a high 3-hydroxybutyric under the heading Ketone and Fatty Acid Oxidation. The explanation said it "indicates increased metabolic utilization of fatty acids. These ketones are associated with diabetes, fasting, dieting (keto or SCD) or illness, among many other causes. Supplementation with l-carnitine 500-1000 mg per day may be beneficial."

Also under the same heading, my suberic was even higher. They stated it was "consistent with overnight fasting or increased fat in the diet" and the recommendation again of l-carnitine.

And here's something interesting: When I did the OAT in 2018, all of the following except 4-hydroxybutyrate under the same heading of Ketone and Fatty Acid Oxidation were way above range;

3-Hydroxybutyric
Acetoacetic
4-Hydroxybutyric
Ethylmalonic
Methylsuccinic
Adipic
Suberic
Sebacic

Then when I redid the OAT in January 2019, they were ALL back down except Ethylmalonic. The change?? I was now on bile since late November 2018--my gallbladder stopped releasing enough.

Then comes the OAT in May 2019, and 3-Hydroxybutyric is slightly up again, and Suberic is definitely up again.
 

grapes

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The glycation of our cells is a chronic thing and the damage accumulates due to chronic excess carbs. It is why I wonder whether one of the standard things to try for anyone with ME/CFS symptoms would be to get into nutrional ketosis (nothing extreme mind you) and bring down the insulin levels, systemic inflammation and glycation levels in the body. Candida, SIBO, pancreas damage, glucose metabolism and many more are all a direct cause. And in my case ME/CFS absolutely had a root cause in chronic excess carbs.
Hey BeADocToGoTo1, when you say candida is a direct cause, do you mean a direct cause of glycation??
I had to look "glycation" up and I'm blown away by it. For example, this: https://www.ncbi.nlm.nih.gov/pubmed/15609100/

But what are talking about with candida??

And why would excess carbs cause ME/CFS?
 

BeADocToGoTo1

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Hey BeADocToGoTo1, when you say candida is a direct cause, do you mean a direct cause of glycation??
I had to look "glycation" up and I'm blown away by it. For example, this: https://www.ncbi.nlm.nih.gov/pubmed/15609100/

But what are talking about with candida??
Candida will always be in our bodies, just like many different species of bacteria and yeast. It is for the most part a symbiotic relationship. The problem is when there is an overgrowth or imbalance. This imbalance is in large part a result of poor diet; excess carbs and sugar.

And why would excess carbs cause ME/CFS?
Sorry, I skipped a few logical steps in my post. The damage that chronic excess carbs and sugar does to the body can show up in many places in the body through some of the things mentioned, such as systemic inflammation, glycation of cells, mitochondrial dysfunction and oxidative stress.

Everyone has different breaking points and different weakest links in their DNA and body. In my case, my weakest link was the pancreas, which was irreversibly damaged through chronic excess carb intake. This caused nutrient imbalances through exocrine pancreatic insufficiency, a lowered ability to keep my microbiome balanced, insulin and blood glucose issues, lipids issues, etc. All this impacted my metabolic pathways and caused mitochondrial dysfunction, heart and breathing issues, bone and muscle wasting, PEM, and dozens of other issues, and I ended up with many years of ME/CFS. Was excess carbs/sugar the only impact? Probably not, as like most everyone else I also had exposure to many toxins, environmental impacts, and had many viral and bacterial infections. However, in my opinion and in my case, it was the single biggest root cause. Hope that explains it a bit better.
 
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BeADocToGoTo1

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@grapes The OAT is a great test for many things, but checking whether you are in ketosis should be done through a blood monitor just like a blood glucose monitor, not urine. KetoMojo is the one I use, but there are others.
 

BeADocToGoTo1

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@grapes
The copper detox you had mentioned before and a discussion on ALP made me think of this. Have you been tested for Wilson disease? Have you had your zinc, copper, (zinc:copper ratio is very important), Alkaline phosphatase (ALP) tested recently?
 

leela

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Candida will always be in our bodies, just like many different species of bacteria and yeast. It is for the most part a symbiotic relationship. The problem is when there is an overgrowth or imbalance. This imbalance is in large part a result of poor diet; excess carbs and sugar.
I'll add to this that Candida overgrowth is pretty much automatic with a supressed immune system.
I've had systemic overgrowth for more than a decade no matter what diet, how much nystatin and fluconazole, etc. So just wanted to say that while diet can contribute, it's not the cause. I have and have had a clean diet for a very long time and I can't get these buggers to calm down.

Perfect username, btw!
 

BeADocToGoTo1

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I'll add to this that Candida overgrowth is pretty much automatic with a supressed immune system.
I've had systemic overgrowth for more than a decade no matter what diet, how much nystatin and fluconazole, etc. So just wanted to say that while diet can contribute, it's not the cause. I have and have had a clean diet for a very long time and I can't get these buggers to calm down.

Perfect username, btw!
Thank you, and that is very good point. Microbiome is such a complex area, and so individual. Medicine, environment, geography, diet, etc. all influence it. It is even multi-generational, so a well or poorly balanced microbiome is passed down from our mothers during birth (and so whether born via c-section or not also has an effect) and whether we were breastfed or not. When you move to a different country, your microbiome may not be balanced with the food and environment of your destination.

One day, I hope that the science fiction of having your toilet quickly analyze and provide the kitchen with data for making a perfectly tailored pill that includes all the micro- and phytonutrients as well microbiome balancing critters you need for that day, becomes reality. :)
 

leela

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Thank you, and that is very good point. Microbiome is such a complex area, and so individual. Medicine, environment, geography, diet, etc. all influence it. It is even multi-generational, so a well or poorly balanced microbiome is passed down from our mothers during birth (and so whether born via c-section or not also has an effect) and whether we were breastfed or not. When you move to a different country, your microbiome may not be balanced with the food and environment of your destination.

One day, I hope that the science fiction of having your toilet quickly analyze and provide the kitchen with data for making a perfectly tailored pill that includes all the micro- and phytonutrients as well microbiome balancing critters you need for that day, becomes reality. :)
Well, your wish may have come true...I haven't used this place yet, but it was recommended by an allergist in my city:
https://www.viome.com/
 

grapes

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@grapes
The copper detox you had mentioned before and a discussion on ALP made me think of this. Have you been tested for Wilson disease?
No, I don't have Wilson's. It happened because a mold illness tanked my zinc VERY low and I didn't realize it--was eating high copper foods when it was tanked.

I had another very interesting discovery. I crashed again two days ago after doing a lot of housework in prep for guests. So once again, I went back to my latest OAT. All these past 4 years, I've corrected many things. And of 7 problems left (which have improved the past few years), none made sense to explain these crashes. But one was high succinic and it's been high before.

And info in a gastrointestinal disorder training manual I found that pertains to the OAT, says that high succinic indicates cellular stress in regards to glycosis and mito function. Bingo: the carbs in my stool that I discovered several weeks ago!

Then I realized that though I always take digestive enzymes for breakfast, I never take them for other meals. I am now more committed. Additionally, I have a bottle of just Amylase. It says three caps before every meal. I did take three of them twice yesterday. And have done the same today. Am I seeing relief from this massive fatigue? Not really. But I'm not surprised. Because my subjective experience is as if I run out of glycogen, or as if my glycogen fails to convert to enough glucose. Something along that line. And my subjective experience is also that it takes a minimum of 5 days if I'm lucky, and 7 days minimum to feel better again...as if I'm building something back up. But what?? Is is possible that my glucose intake is never building enough glycogen?? I'm aware of glycogen storage disease...an enzyme is missing. But reading all the different types doesn't fit me.

It's very much, as I've described before, like a car running out of gas, but you don't know it if there's no gas gauge, until BAM, the car stops running. THAT describes me. I have plenty of energy to do what I do, then I crash. I "use up something".

And taking digestive enzymes has not helped enough. When I look back at my life, I've only had about 80% of the energy of others. This can explain why I was so exhausted detoxing copper, why any kind of biological stress wipes me out, why yeast dieoff wipes me out.

So....have you ever heard of a pancreas not making enough Amylase only?? Is that possible? My previous OATS imply I wasn't breaking down protein well. But that's not the case anymore. The fat I wasn't breaking down has been solved by taking bile tablets. But I'm not breaking down carbs well?? Just carbs??

Also, as I look back at my adult life, I've always produced too much lactic acid if I'm climbing stairs, hiking up a hill. I can delay it by taking deep breaths before I do either, but it still comes, even if delayed. So that implies I've had whatever this is my entire life, and for some reason, it's worse now. My low B2?? I'm working on it. A higher level of B1? I'm working on it. But I'm still curious about the above bolded paragraph.
 

BeADocToGoTo1

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Sorry you crashed again. It is hard to pace, when it seems often so random in terms of the timing or the varying levels of exertion that can trigger it.

Regarding amylase, and pancreas function, anything is possible. It is the one doctors focus the least on, since amylase is also produced by salivary glands. Their view is that if you take pancrelipase you have all bases covered. There are some pills that have higher amylase ratios than others. It is one of the issues with testing for enzyme production, since it is not accurate enough to determine at what level and which exact enzyme your body is struggling with. It can vary day-by-day too.

I have noticed that my lipase production seems to have become slightly better since I really turned my food intake around and gave my pancreas time to heal. However, my protein enzyme production is still super low.

Another side thought. Have you tried chewing longer, so that more saliva with amylase is mixed and has time to help digest the food in the mouth before swallowing?

When you do take the amylase pills, are they enterically coated (i.e. can survive the acid bath of the stomach)? It would be better to take them with food, not before. Depending of course on how many you take, but try the 1st pill after the first bite, next one around halfway, and last one towards the end. And yes, if you do not make enough it would be needed for every meal, snack or drink with calories.