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

grapes

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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 didn't realize that about saliva. I am missing part of my left salivary gland, but have all the right. Don't even notice it. So can't imagine that would be a problem.

But again, all of this crashing started after my first six month and horribly-fatiguing copper detox, which was followed by SIBO (doc says that was related to poor bile release at the time), and when my candida was a mess. I have always wondered if candida plays a role in all this, as I've had repeated problems with candida due to my poor bile release. But I'm now on bile, and have greatly improved my candida levels, to the point that only arabinose in my urine still needs to come down. Yet, I still crash.

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.
How are you testing them?? I really should be doing that.

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?
Never even knew to do that.

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.
The only Amylase I found at first are by NESS and no, the capsules are not enterically coated. I completely forgot about that when I got these. https://smile.amazon.com/NESS-Enzym...words=amylase&qid=1563411660&s=gateway&sr=8-9

But my Complete Enzymes by Dr. Amy Myers aren't coated either. The complete enzymes I mostly take are Natures Plus Maximum Strength ULTRA-ZYME. They are hard, coated tablets said to delay. https://smile.amazon.com/Natures-Pl...ds=ULTRA-ZYME&qid=1563411836&s=gateway&sr=8-4

I still have the Pure Encapsulations Pancreatic Enzyme formula with acid-resistant capsules. But they were too strong/high in enzyme amounts for me (quadruple the amount of amylase, eight times the amount of lipase, and triple the amount of protease...as compared to Ultra-Zyme).

My stool test said elastase was good at >500 (reference >200) and the interpretation said this: Elastase findings can be used for the diagnosis or the exclusion of exocrine pancreatic insufficiency. Correlations between low levels and chronic pancreatitis and cancer have been reported.

The ONLY clue to my crashes is the stool showing an intermediate level of carbs in my stool. And carbs are a man source of energy for ATP. So if I'm not metabolizing carbs well, I'm left wondering if there's a conneciton to these terrible crashes. Then as mentioned, my high succinic is said to "indicate cellular stress in regards to glycosis and mito function". Below are the OATS:

2015: Very high succinate
2016: Very high succinate
2018: Very high succinate
2019: Much better...just barely above the range, yet I still crash. So I'm wondering if it rules out a problem in glycosis...yet why the carbs in my stool??? Something is not adding up here about me and my crashes....

But here's another clue. In regards to Succinic being related to glycosis, the info concludes: Approximately 90% of the time, these values improve with effectively treating..

1) yeast and bacteria (I have brought three of four high levels down, and with Arabinose, brought it down from 75 to 50, and still need to get it down to less than 26)...yet I still crash
2) dietary changes (I have greatly reduced sugar)
3) reduction in oxalates (have kept that below the top of the range twice now)

Yet I still crash.
 
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BeADocToGoTo1

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Hi @grapes

A few things pertaining to your post:

Succinic acid can also come from certain foods and food additives, so perhaps that is why it showed elevated.

And carbs are a man source of energy for ATP. So if I'm not metabolizing carbs well, I'm left wondering if there's a conneciton to these terrible crashes
Using carbs as the main source can be a problem in and of itself. I have mentioned looking into becoming a "fat burner" instead of a "sugar burner". This means you will use ketones as the main source, and are not reliant upon glucose as the main source, which can cause these types of spikes and crashes. It can point to insulin resistance, which means your cells no longer use glucose effectively. This then goes down the the nasty road of pre-diabetes, leading to more insulin production, leading to more insulin resistance, leading to diabetes.

Please look into nutritional ketosis. Please check your blood glucose before and after meals, and especially around crashes for a little while. Please check you HbA1c and get that to 5.2% or lower. Please check your blood ketone levels to see whether you are still eating too many carbs that your body can handle. Please count your carbs (grams per meal and per day) for a week to get an idea of your current intake from food and drinks....be very honest.

By the way, I was just exploring different enzyme products, and this is interesting: https://www.houston-enzymes.com/lea...yth-all-enzymes-are-destroyed-by-stomach-acid
That is why for pancreatic enzymes, enteric coated versions are so important. For other types of enzymes, you could try things like bromelain or papaine and see whether that helps. I think I mentioned Life Extension enhanced super digestive enzymes product before that might be worth trying.
 
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PatJ

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By the way, I was just exploring different enzyme products, and this is interesting: https://www.houston-enzymes.com/lea...yth-all-enzymes-are-destroyed-by-stomach-acid
Here is a long FAQ about enzymes from Enzymedica. The question for "Are supplemental enzymes destroyed by stomach acid?" has this answer:
Vegetarian enzymes tolerate stomach acid well. Enzymedica’s Thera-blend™ vegetarian enzymes were formulated to perform in a wide pH range including acidic and alkaline environments.
And enzymestuff.com has this to say about animal vs. plant enzymes:
Plant enzymes are much more stable over a wider pH and temperature range. The stomach is very acidic whereas the small intestine is more alkaline. This is why plant enzymes can work effectively in the stomach, whereas animal-derived or pancreatic enzymes cannot. Most pancreatic enzymes need to be enterically coated to survive the stomach environment.

Plant enzymes can be customized more because they are derived from plant or microbe sources. Pancreatic enzymes are limited to a ratio of proteases (proteins), amylases (carbohydrates), and lipases (fats).

Food is not absorbed in the stomach. The big advantage of plant derived enzymes is that they can be pre-digesting food in the stomach for 60 minutes or much longer before the digested food even gets to the small intestine where it can be absorbed. By the time the digesta hits the small intestines which may be damaged, it is far less likely to provoke a negative reaction even if it crosses into the bloodstream. And it is far more likely to be absorbed and used as nutrition.

With pancreatic enzymes, the food can be absorbed in a poorly digested state before the pancreatic enzymes even get out of their enteric coating and start working.
 

grapes

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I am back and see my last post was around July 2019. I was on the right track, but 2019 became hugely busy for me, and it's taken at least 6 more horrific, single-event fatigue crashes, plus constantly having to pace myself for fear of a crash at any time...to get back into this.

Namely, after I had another typical horrendous fatigue crash just two days, and which is just like severe glycogen depletion, I had to face the fact that NOTHING I've done, nothing I've improved in my several OAT testings, has stopped these crashes. Even worse, I can't keep my nutrient levels up if I happen to stop my vitamins for a few weeks. They plummet. I continue to also show mitochondrial issues. I need high amounts of ubiquinol to not get breathless. And climbing stairs produces high amounts of lactic acid in my legs, plus using my muscles for something as simple as painting a cabinet raises the lactic acid high enough that I have to bring my arms down a second.

In fact, the only success I achieved and saw was that taking bile (polyps in my gallbladder duct have been blocking bile) finally turned my OAT fatty acid results around in January 2019, and the fact that I tried to get by with less bile resulted in two urine fatty acids to go back up in May 2019. So back onto two bile pills per meal I finally went. But I still have single event crashing here and there no matter how much fat I eat and with bile.

So what I made a strong hypothesis yesterday, stronger than before, that this just HAS be about my pancreas not releasing enough amylase (for whatever reason).

And I knew what I needed to try after reading this:

Salivary amylase” is believed to contribute minimally to the digestion of carbohydrates, which therefore primarily depends on “pancreatic amylase” along with brush-border lactase, maltase, isomaltase, and sucrase activities
https://care.diabetesjournals.org/content/39/6/884

So yesterday, I took out one, acid-resistant capsule from the bottle of Pure Encapsulations Pancreatic Enzyme formula (which had proven too strong for me in the amount of enzymes), emptied it, and poured the contents of three Amylase caps by Ness into it. Swallowed it about 4:30 pm. That meant that it would reach my small intestine in perhaps 6-8 hours i.e. while asleep.

And when I woke up....I literally felt better. I NEVER EVER feel like that after a chronic fatigue, glycogen depletion crash. It would take me nearly a week to feel like that. I also took one at 10 am today. I'm guessing taking the amylase in the delayed release caps twice a day, but would appreciate anyone here who has to take enzymes, to give me an idea.

I still take enzymes with every meal--Dr Amy Myers enzymes right now, which includes Amylase. I also found out via an OAT that I don't break down proteins well. So I take Pepsin with Betaine with protein meals. I also take chromium.

I feel like I've just walked out of a 5 year abyss....
 
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grapes

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Adding to my post before this:

Even with...

* an intermediate level of carbs in my stool diagnosed as an absorption issue
* clear symptoms of not enough energy from carbs (high lactic acid when using my muscles)
* a high urine beta-hydroxybutyrate (which only Diagnos-Tech connected to carbohydrate absorption issue, whereas Great Plains stubbornly said "No, it's a Fatty Acid issue)
* horrific fatigue crashes similar to glycogen depletion
* a strong need for ubiquinol in high amounts (meaning my mito has been affected)
* having no problem with eating fats as long as I take plenty of bile
* needing corn starch stirred in water to sleep better

...I have never have had ANY gastrointestinal symptoms. No diarrhea, no constipation, no irregularity, no stomach pain, no excess gas...zilch.

So when I'd study all the causes of an absorption problem, it made it hard to pinpoint what is causing these horrific, glycogen depletion crashes when all possible causes had some of those issues. So it took me just making an educated guess on what made sense---not enough amylase being released for whatever reason. And so far, knock on wood, putting amylase in a coated capsule seems to say "yes, I've needed more amylase.".

I also see now that I may have to take it with every meal. I hope to get clarification on what others are doing....
 
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BeADocToGoTo1

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Hi @grapes

Good to hear from you. Anything that helps reduce malabsorption is great for nutrient levels and avoiding irritations further down the intestinal tract, as well as autoimmune reactions.

Since you have tried bile, have you also tried taking pancreatic enzymes (e.g. Creon) with each meal to see if that helps improve symptoms? Even without any pancreatic issues, the older we get the fewer enzymes our pancreas produces. I think that pancreatic enzymes would benefit life extension programs in general.

The other area I of importance is the blood sugar control. Did you purchase a blood glucose meter to check how your body does with glucose spikes and specific meals or types of food? What is your HbA1c at now?
 

grapes

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Hi BeADocToGoTo1. Yes, if only I had known starting five years ago that this was all about a poor release of amylase. Even the doctor I was using last year who ordered the stool test seemed to have no clue why I had an intermediate level of carbs in my stool! So I was on my own since last year, and FINALLY put two and two together. In ONE DAY after taking that first cap, I was SO much better with energy and a decrease in the lactic acid.

No wonder I was never able to keep my nutrients up. And yes, I did get Hashi's and am on LDN. How did you know this can cause an autoimmune disease? What I did notice is that my immune system was going haywire by the early morning when it's still dark---2 years now of that. Still is, too. I don't understand the connection of that nighttime inflammation to this. But I'm working hard to control the early morning inflammation. Nothing I take at bedtime lasts long enough.

What I've moved to is filling the acid resistant capsule about 2/3rd full of Amylase (540 mg of amylase), and the rest of the way with Pure Encapsulations Pancreatic Enzyme--quite high levels and possibly close to Creon for an OTC supplement. I just remember that taking the Pure Encapsulations capsule was WAY too much for me. So in my experimentation phase, I'm hoping that the 1/3rd of the cap with the later enzymes, and taking 3 times a day now, is a good amount for me.

My most recent A1C was around 5.8...slightly too high. But that was when I was surviving on simple carbs, and don't need to do that anymore. I also take GTF Chromium with every meal. Yes, I do have a blood glucose monitor--just need to start with that.

P.S. if you have any idea how a pancreas can do such a lousy job releasing JUST amylase, I'd sure like to know. Seems like it would be a poor release of all enzymes...
 

grapes

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Hey @BeADocToGoTo1, I'm curious as to what is going on after 7 days of being on the acid resistant cap wtih 540 mg of amylase. i.e. though I'm not crashing like I used to, and though my lactic acid isn't rising like it used to when I use my muscles, I'm now more physically tired. For example, I have gone walking twice this week....and afterwards I feel more tired. Walking doesn't do that to me. It makes me feel more energized.

I also notice that I don't feel quite as well in the mornings...like something is wearing me down.

So I'm trying to analyze what this could be about with questions I'm wondering about. Would improving my body's absorption of glucose mean I'm now detoxing something, and thus feeling worn down physically? Or since I've upped my activity, do I need more than 540 mg amylase? It's a mystery!!

UPDATE: it may be because I have low iron. Working on that.
 
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BeADocToGoTo1

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..

No wonder I was never able to keep my nutrients up. And yes, I did get Hashi's and am on LDN. How did you know this can cause an autoimmune disease? What I did notice is that my immune system was going haywire by the early morning when it's still dark---2 years now of that. Still is, too. I don't understand the connection of that nighttime inflammation to this. But I'm working hard to control the early morning inflammation. Nothing I take at bedtime lasts long enough...
Not sure about a direct link to autoimmune disease, but two elements are in play. One is that nutrient deficiencies impact metabolic processes and thus can impact anywhere in the body including your immune system. Nutrient deficiencies will have a strong impact on the functioning of the thyroid as well. Secondly, when undigested particles go through the intestinal tract, these can be seen as intruders by the body (leaky gut/ intestinal permeability, inflammation are good examples).

Hopefully LDN is not the only thing you are taking for Hashi! Hashimoto's is a tough one to dial in initially.

The impact (or root cause) of thyroid issues on ME/CFS symptoms is not to be underestimated.

Hopefully you have access to a good functional or endocrinologist doctor who preferably has thyroid issues him/herself. My wife, who has Hashi, became ill from Synthroid, but has been great using Armour Thyroid (made from animal thyroids) which contains both T4 and T3. If your body has difficulty transforming T4 to T3 due to e.g. nutrient deficiencies, autoimmune, damage or other issues, taking just T4 will not help. Ask if they prescribe Armour (NDT), and not just the synthetics. If not, (run!) find another doctor as it shows that they are closed off to properly treating you. The endo should also closely monitor temperature impact and nutrient levels that pertain to the functioning of the thyroid during the time of dialing in your thyroid medication, and afterwards, as things can change over time.

Since the protocol of thyroid hormones and supplements is very specific to your body and the tiniest over- or under-medication can cause massive swings it is important to find a good doctor to help you with this balancing act. In addition there are some related nutrient levels that would be good to check:
  • selenium, iodide, iron, ferritin, iron binding capacity and saturation, and DHEA.
There are others here like @Gingergrrl that are far more experienced than I am on the subject. The following book was written by someone who suffered and overcame thyroid issues:
  • Paleo Thyroid Solution by Elle Russ.
...
My most recent A1C was around 5.8...slightly too high. But that was when I was surviving on simple carbs, and don't need to do that anymore...
That is definitely something to continue tackling as a 5.2% equates to around 100 mg/dL, which is healthy. 5.3% or higher and trouble can start, and can be an indicator of too many carbs for your body. But since it is a 6-8 week blood glucose average it might already have improved a lot if you changed the food as you mentioned.

..
P.S. if you have any idea how a pancreas can do such a lousy job releasing JUST amylase, I'd sure like to know. Seems like it would be a poor release of all enzymes...
Mystery! And it is something that is almost impossible to ascertain. Everybody's pancreas functions a little differently, even when healthy. Even meals, time of day and many other elements can have an impact. My gastro mentioned that it does not help worrying about the specific units of lipase, protease and amylase as there is not much you can do about it anyway. You dial in the pancrelipase, which has all three, to what helps reduce symptoms.
 

BeADocToGoTo1

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Hey @BeADocToGoTo1, I'm curious as to what is going on after 7 days of being on the acid resistant cap wtih 540 mg of amylase. i.e. though I'm not crashing like I used to, and though my lactic acid isn't rising like it used to when I use my muscles, I'm now more physically tired. For example, I have gone walking twice this week....and afterwards I feel more tired. Walking doesn't do that to me. It makes me feel more energized.

I also notice that I don't feel quite as well in the mornings...like something is wearing me down.

So I'm trying to analyze what this could be about with questions I'm wondering about. Would improving my body's absorption of glucose mean I'm now detoxing something, and thus feeling worn down physically? Or since I've upped my activity, do I need more than 540 mg amylase? It's a mystery!!

UPDATE: it may be because I have low iron. Working on that.
Now that you mentioned Hashi, I would make sure that your thyroid and the medication and supplements are dialed in for that, as those symptoms definitely overlap. When was the last time your endo worked with you on nutrient level tests and thyroid medication level adjustments?
 

grapes

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Yes, I was already on thyroid meds with T3 in them. And was doing well and still am. No, any Endo I've tried wants me on T4-only. Been there, done that---I did horrible without T3 in my treatment.

I also did a nutrient test at the end of February and many were terrible. Have been bringing them all up since then. BUT it's only been just over a week that I figured this out, so have been very committed to my nutrient levels. I'm also working on bringing up low iron. I take DHEA. Also selenium for lowering the anti-TPO. Gluten free. On iodine. Ubiquinol.

Yes, have definitely changed my foods since I found out what is going on. I don't need to be doing simple carbs to survive.

This that you stated was really good: "...when undigested particles go through the intestinal tract, these can be seen as intruders by the body (leaky gut/ intestinal permeability, inflammation are good examples)." I STILL wake up with inflammation. Reading the latter from you says I need to get back to what I was taking from a doc for leaky gut!

I value your feedback.
 

Gingergrrl

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There are others here like @Gingergrrl that are far more experienced than I am on the subject.
I just saw your tag and apologize that I wasn't able to read the entire thread but wanted to reply... And you give me way too much credit and I am not an expert on Hashimoto's (although I do have Hashi's and can speak about my personal experience w/it). I was diagnosed with it at the end of 2013 by an Endo (who is still my Endo now seven yrs later) but I suspect that I had it for at least a year prior to being diagnosed.

Not sure about a direct link to autoimmune disease, but two elements are in play. One is that nutrient deficiencies impact metabolic processes and thus can impact anywhere in the body including your immune system. Nutrient deficiencies will have a strong impact on the functioning of the thyroid as well.
Do you mean a direct link between Hashi's and other autoimmune diseases or a link between nutrient deficiencies and Hashi's (or something else)? When I was first diagnosed with Hashi's, I had two doctors tell me that it was like the "gateway" to other autoimmune diseases and this was definitely true in my case. They said it is usually a viral infection that flips into autoimmunity and starts attacking the thyroid. In my case, the autoimmunity started with attacking my thyroid but greatly worsened and continued attacking the rest of my body.

Ask if they prescribe Armour (NDT), and not just the synthetics. If not, (run!) find another doctor as it shows that they are closed off to properly treating you.
I agree wholeheartedly with this and would be very concerned if an Endo would not prescribe Armour (or it's equivalent). My Endo prefers Armour and this was his initial recommendation for me. It is the only thyroid med I have ever taken and I was very lucky in this regard.

I also did a nutrient test at the end of February and many were terrible.
What nutrient test did you? When you said that the results were "terrible" do you know what caused this in your case? Do you have malabsorption issues like I do? Do you have MCAS or prior mold exposure? (and I apologize if you explained this and I wasn't able to read the entire thread).

I do not properly absorb many things (Potassium, Iron, Vit D, B-12 & Folate, etc) unless I supplement them daily. I have to take very high dose of Vit D (10,000 IU's per day) just to maintain Vit D in the normal range on blood tests. I also had to increase my Armour dose last year (per my Endo) from 15 mg/day to 30 mg to 45 mg in order to get my thyroid numbers in proper range on blood work.

My Endo said that he did not think my thyroid had gotten worse vs. that I was not properly absorbing the Armour similar to the vitamins. He did not know why this was the case and the only explanation was from my MCAS (which is now in remission and I have no symptoms but histamine may still be making the cell membranes more permeable). I had a colonoscopy in 2019 (not b/c of this) and it was totally normal.
 

grapes

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What nutrient test did you? When you said that the results were "terrible" do you know what caused this in your case? Do you have malabsorption issues like I do? Do you have MCAS or prior mold exposure? (and I apologize if you explained this and I wasn't able to read the entire thread).

I do not properly absorb many things (Potassium, Iron, Vit D, B-12 & Folate, etc) unless I supplement them daily. I have to take very high dose of Vit D (10,000 IU's per day) just to maintain Vit D in the normal range on blood tests. I also had to increase my Armour dose last year (per my Endo) from 15 mg/day to 30 mg to 45 mg in order to get my thyroid numbers in proper range on blood work.
Gingergrrl, I don't know if you read my posts, but my pancreas hasn't been releasing enough amylase for at least 5 years and I never caught that, nor did any doctor I used. I finally had to figure it out on my own just over a week ago. These past five years, I had corrected anything and everything I knew about myself (and much from doing Organic Acid Tests), yet I still crashed horribly. So it just became natural to conclude that this HAS to be from inadequate amylase being released into my small intestines. So I proved it--just over a week ago, I took an empty acid resistant capsule, poured in amylase in capsules, and LITERALLY the next day, I had more energy that I've had in five years, PLUS eliminated 90% of the high lactic acid that would build in my muscles. I now take that capsule three times a day, and it's also topped off with the other enzymes.

And all these years, I had a terrible time keeping nutrient levels up while I wasn't getting enough amylase, but I persisted with supplements. Then there came a 6 week period (minimum) early this year that I was so busy, I wasn't taking my supps. And did an GDX test in late Feb which showed I had a "critical" need for so many nutrients. It was shocking.

And in my case, there seems to be a strong connection that this all started with my pancreas after a serious mold illness before 2015.

By the way, thyroid lab results aren't just about being anywhere in the normal range. The stop the thyroid madness website (excellent information) explains that here: https://stopthethyroidmadness.com/lab-values They also have some excellent books.
 

Gingergrrl

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Gingergrrl, I don't know if you read my posts, but my pancreas hasn't been releasing enough amylase for at least 5 years and I never caught that, nor did any doctor I used. I finally had to figure it out on my own just over a week ago.
I apologize that I haven't read your posts and when @BeADocToGoTo1 tagged me earlier today, I didn't have a chance to read the entire 9-page thread but really wanted to reply. That is amazing that you figured out on your own that you were not releasing enough amylase. We really have to be our own detectives and researchers.

So I proved it--just over a week ago, I took an empty acid resistant capsule, poured in amylase in capsules, and LITERALLY the next day, I had more energy that I've had in five years, PLUS eliminated 90% of the high lactic acid that would build in my muscles.
Was the high lactic acid feeling that you had a feeling of muscle pain or muscle weakness (or something different)?

And all these years, I had a terrible time keeping nutrient levels up while I wasn't getting enough amylase, but I persisted with supplements.
How did you discover that you were having trouble keeping nutrient levels up? Was it based on blood work that was showing your levels were low? In your case was it related to malabsorption of the nutrients? It sounds like you were already taking supplements but they were not absorbing properly without the amylase? I will Google amylase so I understand better what it does.

And in my case, there seems to be a strong connection that this all started with my pancreas after a serious mold illness before 2015.
I also had a serious mold illness in 2015 (which was triggered by toxic mold/mycotoxin exposure from the end of 2011 to 2015 in a prior rental). I had other immune triggers prior to the mold exposure that made me even more susceptible to it and my immune system could not fight it off in the way that a healthy person might have been able to do. It all ended with severe MCAS and autoimmunity for me at that time.

By the way, thyroid lab results aren't just about being anywhere in the normal range.
I totally agree and am familiar w/the website you linked. What I was trying to say (in my prior post) was that b/c of the malabsorption issues, I had reached the point that my thyroid numbers were not even in the normal range any more (but they had been for several years at 15 mg/day of Armour). So my Endo raised it to 30 mg and then 45 mg just to get back in the normal range (not just TSH but entire thyroid panel w/T3, T4, etc).

I asked him if he thought this meant my thryoid/Hashi's was suddenly getting worse but he said no and he thought it was due to the malabsorption. It was odd b/c my MCAS is in remission, to the point I would say it is cured, yet it can't be if it is causing malabsorption of meds & supplements (unless it isn't the cause?) so I want to Google amylase and understand your discovery better.

Edit: I just read some different websites about amylase and it seems to link to pancreatitis and absorption of food (if I understood it correctly)? Does it also link to absorptions of vitamins/ supplements/ and medications? I can't quite tell if it is similar to my situation and I don't have any GI symptoms. I had GI symptoms in 2015 & 2016 when my MCAS & anaphylaxis were out of control but not since then.
 
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grapes

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Hi @Gingergrrl FYI: I'm not in the entire 9 pages. He started this string long before me. And I wouldn't have tried to read it all, either. :)

The high lactic acid I would feel anytime I raised my arms to do a project, or climb stairs, is like a burning in the muscles. And yes, it can accompany weakness since it's an inferior source of energy.

Through the years I mention, I'd do testing and constantly found myself with poor levels of this or that nutrient or nutrients. I was on a mission that past 5+ years to find out WHY I was crashing. And I'd fix SO many issues, but still crashed.

Yes, my constant overreactive immune responses also did a number on me. And something is still going on, as I wake up especially in the 3-4 am area with what feels like high cortisol and a high immune response. I know that the blockage of bile release which was going on during those years was allowing all sorts of toxins to hang around in me. So I'm seeking a kit to do from two different docs which detects toxins and metals. I've had high copper before.

As far as amylase, it's main focus is converting carbs into simple sugars aka monosaccharides to be absorbed in the small intestine. I had an intermediate level of carbs in my stool--the big clue that my small intestine wasn't getting enough amylase. I then proved it. What I don't understand yet is why my absorption of nutrients would be affected. it may be due to a totally different problem like low stomach acid...or that I wouldn't be absorbing nutrients if half of my carbs just go out with my stools.
 

BeADocToGoTo1

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seems like the animal enzymes are like the prescription strength ones for humans being discussed in this thread. would there be harm in taking something like this; seems to me its the same stuff-pancreatin/
The manufacturing process and ingredient standards are likely not the same as those for human consumption. I would not risk it. For the most important thing in your life...your health...I would not go cheap on anything I put into my body, especially when you are already not feeling healthy.
 
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The manufacturing process and ingredient standards are likely not the same as those for human consumption. I would not risk it. For the most important thing in your life...your health...I would not go cheap on anything I put into my body, especially when you are already not feeling healthy.
Ok thanks. It was recd to me on another forum and while it seems like a powerful product the fact its not for humans concerned me. Do you have any recommendations on any otc enzymes? Ive taken digest gold before and its hit or miss with me, sometimes very helpful others feels like it does nothing. Is pain under the breastbone/diaphragm area a symptom of this? I have obviously a myriad of other me/cfs type symptoms and tons of digestive complaints but this along with liver /gallbladder pain are ones that are around a lot and especially when I have crashes. thanks.
 

BeADocToGoTo1

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Ok thanks. It was recd to me on another forum and while it seems like a powerful product the fact its not for humans concerned me. Do you have any recommendations on any otc enzymes? Ive taken digest gold before and its hit or miss with me, sometimes very helpful others feels like it does nothing. Is pain under the breastbone/diaphragm area a symptom of this? I have obviously a myriad of other me/cfs type symptoms and tons of digestive complaints but this along with liver /gallbladder pain are ones that are around a lot and especially when I have crashes. thanks.
It might be worthwhile discussing a prescription version with your doctor, to see whether it helps lower symptoms. I use Creon, but there are others as well. If it takes a while for the doctor to get you a prescription, there are over the counter ones like Dipan-9 (Thorne) or Enhanced Super Digestive Enzymes (Life Extension ) that you can experiment with. They need to be taken with every single meal or calorie drink. The OxBile ( if gallbladder is the issue) that I used briefly was from AllergyResearchGroup.

The key issue with OTC pancreatic enzymes is that both quality of ingredients and quantity of enzymes are not controlled in the same manner as a prescription one would. I took them briefly before my official diagnosis.

That pain you mention I had as well, but of course it could mean many things. I would not ignore it though as it could point to serious unpleasantness with, for example, stomach, gallbladder, liver or pancreas. Have you completed any of the following testing?

Malabsorption Tests to Consider
  • Nutrient level and Organic Acid testing such as Genova FMV or Great Plains Lab Organic Acid Test (OAT) are great for an overview. These tests helped me tremendously.
  • Stool test pancreatic elastase
  • Blood test fasting trypsin (to see if you produce enough enzyme for protein breakdown)
  • Comprehensive Stool test for parasites, pathogenes, dysbiosis. E.g. Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology (microbiome dysbiosis indicators), Fecal Fat Distribution (checks if you have issues with different types of fat intake and digestion), Elastase (for EPI, pancreas enzyme marker)and Chymotrypsin (for EPI, pancreas enzyme marker). Doctor's Data has similar tests.
  • Stool test chymotrypsin (similar to, but not as accurate as elastase)
  • Intestinal permeability. Intestinal permeability (a.k.a. leaky gut) is something that your Gastro can also test for. The one I did was: Cyrex Laboratories - Intestinal Antigenic Permeability Screen. It measures intestinal permeability to large molecules, which can cause autoimmune reactions, inflammation, food sensitivities, malabsorption, etc.
  • Gallbladder function. Yet another element that is important in breaking down food and thus any gallbladder issues can cause malabsorption.
  • SIBO and Candida overgrowth. With SIBO, both methane and hydrogen ones should be tested and tackled. Multi-pronged approach is needed as just antibiotics is not enough. A breath test for SIBO and something such as Genova FMV or Great Plains Lab Organic Acid Test (OAT) can be helpful here.
  • Fasting blood sugar tests: e.g. HbA1c, triglycerides, c-peptide, insulin, ketones, glucose
  • Lactose intolerance: Have you tried dairy free for 4-6 weeks? Does it help if you add lactase pills with anything dairy?
  • Food sensitivities: Any food allergy and sensitivity tests completed? What about gluten sensitivity tests?
  • MRI of the abdomen with MRCP with contrast: It gives a 3D picture of the gallbladder and high resolution liver, pancreas, gallbladder, ducts, stomach intestines. Amazing test.
  • Stomach acid: Is your pH low enough to start digesting food? If it is too high this will exacerbate any SIBO, candida overgrowths, and malabsorption. Are you taking antacids or PPI as these only cover symptoms, do nothing about root cause, and can make things much worse. Have you tried the following simple selftest:

    A simple unscientific test to approximate acid level is by drinking a quarter teaspoon of baking soda (sodium bicarbonate) mixed in a glass of water on an empty stomach in the morning. This creates bubbles within two to three minutes when mixed with the hydrochloric acid in your stomach. If after five minutes nothing happens, there is a very good chance the pH of your stomach acid is too high (i.e., low stomach acid).