What a surprise - gut bad = m.e bad

[EddieB]

Not until I had asked for the right tests and spent a tremendous amount of time researching and experimenting on myself was I able to turn 6 years of misery around. Luckily there was a functional medicine doctor who was willing to order the tests for me.

Wow. I’ve been reading through your posts and my head hurts! So much information, thank you for your efforts.

As you said, I questioned doctors years ago about pancreatic issues and was told no. I had an elevated amylase and lipase test, one doctor seemed concerned and sent me for a CT scan, but nothing came from it. Since then, the lipase dropped to high normal, but amylase remains elevated (129/range 28-100). Also have a stool test, pancreatic output/Chymotrypsin elevated (11/range4-9). I have piles of other test results, some normal, some not, but don’t have a clue what they mean. Where do we find your book? Thanks.

 

[EddieB]

BeADocToGoTo1,
Just found your website for your book....

 

[EddieB]

[/QUOTE]

Your story certainly sounds like me... thank you for reaching out and caring enough to bet beside me today. It means so much...

Your welcome. Yep, our troubles do sound similar. We’ll keep working on it.....

 

[Hopeful1976]

Hopefull,
I’m sorry, didn't mean to take up your thread. Can you describe more of what’s going on?

No, I like how this happens - its m.e to a tee - everything interconnected...
My gut seems to drive a lot of my m.e symptoms. Nausea, like a rotting feeling in my gullet, sour sensation across sides of tongue, then hey presto, I may start a new suppliment, and it suddenly disappears (tried turmeric/artichoke/various probiotics/ herbs for candida called dida, plus many others). I eat no sugar, no fruit, no wheat, no dairy no eggs. It's an absolute nightmare, and all I know is when my gut settles, I feel so so much better. I just can't sustain it, it always goes bad again...

 

[Frunobulax]

I'm actually giving up now on fighting it and figuring out how to fix it. Tried everything.

You shouldn't give up. Our gut is such a complex biotope...

Diet alone may not fix it. If you have candida, helicobacter or whatever you'll need to get rid of it first. Low stomach acid could also be a concern. But I'm not a doctor, and I don't know your medical history.

Have you tried going carnivore for a month? Or living off raw vegetables alone? Paleo AIP? Low-protein keto?

 

[BeADocToGoTo1]

Wow. I’ve been reading through your posts and my head hurts! So much information, thank you for your efforts.

As you said, I questioned doctors years ago about pancreatic issues and was told no. I had an elevated amylase and lipase test, one doctor seemed concerned and sent me for a CT scan, but nothing came from it. Since then, the lipase dropped to high normal, but amylase remains elevated (129/range 28-100). Also have a stool test, pancreatic output/Chymotrypsin elevated (11/range4-9). I have piles of other test results, some normal, some not, but don’t have a clue what they mean. Where do we find your book? Thanks.

Sorry for the headache. . Only trying to share one person's perspective in case it helps anyone. A functional medicine doctor may be an avenue to look into for tests and interpretations. The values you mention would need the unit of measure to get a better idea. But in general if pancreatic enzymes are elevated in the blood that can point to e.g. pancreatitis, duct issues so I understand the CT scan. Since amylase (enzyme to break down carbs) is still high I would also have the glucose system checked thoroughly. Perhaps you are taking in too many carbs for your body to handle (this can vary wildly per person). These would include fasting HbA1c, triglycerides, c-peptide, insulin, ketones, glucose. Is there a reason you are still taking PPIs as that will create havoc with your microbiome and intestinal health?

 

[BeADocToGoTo1]

So, my guts gone bad again and hey presto, all m.e symptoms have worsened drastically. Help me please! I don't know what else to try! Done everything and it still keeps going bad

Hi @Hopeful1976

Not sure if I replied in another thread (apologies if this was already covered), but in case you have not seen this information I have copied it from another thread...

What type of testing have you done for checking nutrient deficiencies or any malabsorption issues including exocrine pancreatic insufficiency (EPI), SIBO, Candida overgrowth, gallbladder function, stomach acid strength, Crohn's, food sensitivities, etc.? Ever completed something like Genova Diagnostics FMV or Great Plains Lab Organic Acid Test (OAT)? What is your food and water quality like?

Tests to Consider

• 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.
• Nutrient level and Organic Acid testing such as Genova FMV or Great Plains Lab Organic Acid Test (OAT)
• 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).

 

[BeADocToGoTo1]

I have a sour sensation in my mouth, a nausea through my stomach and bloating...

The sour taste/coating in the morning, the crushing weakness, and the non stop nausea. Lump in my throat that won’t go away..

I had this because stomach acid would leak up during sleep. A simple but effective action is to elevate the head of your bed by 20-25 cm, that helped me stop the flow of acid up into my throat at night. These sleep hours are when you want to heal, not add more pepsin enzymes into your esophagus. Keep the overall bed flat though, so put blocks of wood or a stack of books underneath just the two bed posts at the head of the bed. I still have my bed elevated a bit to this day.

The lump in the throat was also a symptom of silent reflux I had for a long time, but was resolved with a multi-pronged approach of tackling food intake, SIBO, Candida overgrowth and silent reflux.

Have either of you tried taking some pancreatic or other digestive enzymes with each meal to see whether that helps alleviate some symptoms. Some gastros will try this with a prescription for pancrelipase e.g. Creon. There are also over the counter versions, but they are not as well controlled in terms of strength and quality per pill. Please keep in mind that it may take quite a while to feel an impact.

 

[EddieB]

Thank you for the suggestions!

elevate the head of your bed

Already got that. Whatever is coming up is in a vapor, I think gas builds up while I’m asleep and pushes passed the stomach valve.

Have either of you tried taking some pancreatic or other digestive enzymes

Thought about that, my concern was that if levels were already high, adding more with a supplement could make it worse. Flawed logic? Tried betaine and ox bile, burned bad.
I know the PPI is bad news, trying to get somewhat stable to quit. I’ve tried before but the acid rebound is unbearable.
I have both Genova and Great Plains Test. Just did a Viome test, seems pretty useless. Genova showed elevated fecal secretory IgA, I think means inflammation. Extensive testing for celiac, gluten, negative. No dairy, but just gave up eggs to test.

 

[Hopeful1976]

Hi @Hopeful1976

Not sure if I replied in another thread (apologies if this was already covered), but in case you have not seen this information I have copied it from another thread...

What type of testing have you done for checking nutrient deficiencies or any malabsorption issues including exocrine pancreatic insufficiency (EPI), SIBO, Candida overgrowth, gallbladder function, stomach acid strength, Crohn's, food sensitivities, etc.? Ever completed something like Genova Diagnostics FMV or Great Plains Lab Organic Acid Test (OAT)? What is your food and water quality like?

Tests to Consider

• 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.
• Nutrient level and Organic Acid testing such as Genova FMV or Great Plains Lab Organic Acid Test (OAT)
• 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).

My dr would not order these tests. Im uk. And so my g.p will do nothing
Such a wealth of knowledge - thank you so so much for taking such time to help me. I will read send re read through for ideas I can try. Thank you so much

 

[starlily88]

My dr would not order these tests. Im uk. And so my g.p will do nothing

So just to understand since you are in UK - you Cannot get a referral to a Gastroenterologist at all?

 

[Frunobulax]

Thank you for the suggestions!
Thought about that, my concern was that if levels were already high, adding more with a supplement could make it worse. Flawed logic? Tried betaine and ox bile, burned bad.
I know the PPI is bad news, trying to get somewhat stable to quit. I’ve tried before but the acid rebound is unbearable.

PPIs are poison, especially if you have ME/CFS. Get rid of them.
I just posted how to do it
https://forums.phoenixrising.me/threads/getting-rid-of-ppis-acid-blockers.79019/

 

[Hopeful1976]

So just to understand since you are in UK - you Cannot get a referral to a Gastroenterologist at all?

Yes I did once, he sneered at me mostly, did an endoscopy and declared nothing wrong/found, only very mild gastritis.

 

[Frunobulax]

Yes I did once, he sneered at me mostly, did an endoscopy and declared nothing wrong/found, only very mild gastritis.

Leaky gut and microbiome dysbiosis do not show up in an endoscopy, unfortunately.
I think the best way to test for LG is a zonulin test, and a stool test for dysbiosis.

 

[starlily88]

Yes I did once, he sneered at me mostly, did an endoscopy and declared nothing wrong/found, only very mild gastritis.

I am so very sorry you received such treatment from a professional. The most help I got was when I traveled to see a well known Motility Specialist. He knew things inside and out.

 

[BeADocToGoTo1]

My dr would not order these tests. Im uk. And so my g.p will do nothing
Such a wealth of knowledge - thank you so so much for taking such time to help me. I will read send re read through for ideas I can try. Thank you so much

Some tests are standard like elastase, trypsin, blood sugar ones so it would be surprising they would not be able to order them through the NHS. Others might be possible through a functional medicine doctor. In Wales Dr. Sarah Myhill is well known but not sure if she is still taking on new patients. Her office may be able to refer you to someone though.

 

[Mick]

So I've followed his advice for many years, and it's never cured me. The bad stomach always comes back, often with no apparent reason why. I am left thinking that whatever is the root of m.e is the cause of the bad gut.

Im utterly disgusted with being human in this unfeeling and uncaring world.

I reply only because you wrote this. I have had it too. I basically have no doctor (or any other person for that matter) to turn to. When I say that I'm in pain all I can hear is: everybody is in pain, one way or another.

Dr wont do a thing. I'm in the UK. They do nothing for is here.

The favorite go-tos like antacids, PPIs, colonoscopy, endoscopy are easy money makers. They did not show a thing in my case, and 4 doctors stated that my pancreas, stomach, esophagus, and intestines were fine.

I can confirm that in Poland it is also like that. Fortunately, I didn't need any referral to get endoscopy (paid out of pocket multiple times as it is quite cheap and you don't need to go and explain yourself - you just do it whenever it hurts) and of course I was prescribed antacids many times. Now that I think of it - these antacids might have caused more harm than good. Finally in 2016 endoscopy showed something - gastritis. And what? And nothing. Just antacids prescribed again. It took me these last few years to figure out how to deal with my gut so that it heals.

I can tell you what helped me and it's a final and best solution but bear in mind that it may not work for you. You will probably have to go through and try every treatment similarly as I did.

What helps now for ME is... fasting.

Fasting decreases level of inflammation throughout my body. It may take one to three days of more. Of course, the rest of the time I am on vegan diet with quite low carbohydrates but when I forget myself (eat potato chips) - it ends up badly. Some time ago even a small pack of chips could have caused a flare but not so anymore. It may take a week or two of eating chips to get the inflammation at a level that I can't stand. It's there usually all the time but at a lower level. So, what I did in order to be able to eat more carbohydrates was... to heal my gut.

And it was not so easy to achieve. It was almost impossible to achieve. Glutamine and other protein in form of aminoacids that is recommended to heal your gut - didn't work for me at all even though I had a confirmed protein deficiency. When ingested, it rather caused further joint inflammation. Then I found that I had severe deficiencies of almost every mineral (somehow, it was quite pathetic but it was even more pathetic that the doctors didn't catch it at all) - so we're talking about malabsorption here. Only after bringing these minerals to an appropriate level I could ingest aminoacids (and at small doses spread evenly throughout the day) without inflammation increasing.

So, in the end, this proves that even when you fast, you need to be prepared correctly to do it. Otherwise, it won't work. So I tried to fast many many times but with all the mineral and protein deficiencies my gut didn't heal anyway and it only made me feel very awful. Now I can fast for a day or two without feeling awful. And my gut heals. And my inflammation goes down.

So what I need to do now is to fast more frequently and see if it helps even more.

 

[EddieB]

Good that you’ve found some success. Unfortunately, I lose weight rapidly if I fast, even for short periods. So I wouldn’t be able to do it often enough to make a difference.

I’ve recently gave in and went back to eating wheat. I’ve had extensive testing for gluten/celiac etc, all negative, but gave it up just because it’s supposed to be bad. But I need the calories and seem to tolerate it, gained a couple pounds, and feel somewhat better. I’ve read that’s because it’s feeding candida and a host of bad organisms, not sure I buy into that theory.

I also have a couple of really good digestive supplements with glutamine, but make me worse if I take them.
What minerals did you find deficient?

 

[Mick]

Good that you’ve found some success. Unfortunately, I lose weight rapidly if I fast, even for short periods. So I wouldn’t be able to do it often enough to make a difference.

Well, I know that many measures (especially that I recommend) may seem counterintuitive. Ie. they seem to make your worse not better. But the whole point of this exercise is to find what is actually causing all these problems.

So, I'd just ask this question: why do you lose weight rapidly?
Is it because you have metabolic imbalance and catabolism takes over during fasting? I had that too, until I started taking aminoacid supplement.
Or maybe you are hyperthyroid?

In any case, people are often unaware that fasting is a normal physiological state, and for example fasting for one day then eating another 3 days, then fasting for one day is completely normal (more normal for the body than eating all the time). And if it's normal then specific mechanism must have developed that take advantage of this fasting state. And they did - as many papers, theories and practical observations show.

Of course you may start by skipping only one meal every 3 days. Or 2 days. I don't even call this intermittent fasting though it is one.

I’ve had extensive testing for gluten/celiac etc, all negative, but gave it up just because it’s supposed to be bad.

All of these tests are often crappy. I am sensitive for sure (probably to some proteins in the bran so it's something different than celiac but still it makes me terribly miserable).

But I need the calories and seem to tolerate it, gained a couple pounds, and feel somewhat better.

Potatoes? I eat only potatoes, it's my staple food.
But of course bread is the most convenient food.

I also have a couple of really good digestive supplements with glutamine, but make me worse if I take them.
What minerals did you find deficient?

Whoa, all of them. All of minerals, vitamins, nutrients. But most of the time these didn't work when taken, just the opposite. It's hard to nail a specific one that helped the most or was most deficient.

Usually, after many many attempts I found that something worked. Last thing that works for me is selenium. Just took it about 2 weeks ago. But it didn't work for me at all for all these years. Why, oh why? Because now I supplemented with all the necessary aminoacids incl. glycine and NAC. These boosted glutathione and now selenium works. But of course I used to take glycine and NAC. But I was protein deficient. So any protein that I took was taken elsewhere where it was needed more. You can't expect glycine and NAC to be taken to muscles and turned into glutathione if your guts, heart and brain need it more. And these get preferential treatment, unfortunately or maybe fortunately.

What else...
Zinc, copper, omega-3, choline, vitamin D, carnitine, b1... and many more...

 

[EddieB]

Because now I supplemented with all the necessary aminoacids

Yeh, trying to do that but hasn’t gone so good...

First off, had an amino acids profile test (both blood and urine). Other than low normal tyrosine, all normal ranges. I have no idea how indicative that test really is.

Tried-
Lysine, no problems, but doesn’t seem to do anything
Tryptophan, made me sick
Tyrosine, made me sick
GABA, made me sick
Magnesium Glyconate, made me sick, but I take DG licorice and it has glycine

I have selenium but haven’t tried it yet

I just started a trans dermal patch. No ill effects so far.
Each Amino Acid Patch contains:
Lysine USP 12.75mg, Phenylalanine 11.25mg, Leucine 11.19mg, Valine 10.5 mg, Isoleucine 8.25mg, Methionine 8.25mg, Threonine 8.25mg, Tryptophan 3mg, Tyrosine 1.5mg