Me/cfs and metabolism,gut

[Davsey27]

I was curious.Seems that since me/cfs is a multi system illness foods that I normally eat tend to inflame the gut as perhaps energy systems/heat/is affecting metabolic processes like digestion.Slow metabolism,easily.gaining weight and feeling cold
Thyroid is typically normal.I ask myself is it autonomic dysfunction,metabolism.or maybe both

Whether I eat gluten or gluten free seems there is always rumbling,thunderstorm type sounds most of the day whether fasted for several hours or after a neal.I am not sure if this is tied to metabolism being slmeal.

Or if there is something separate from me/cfs that is not related to metabolism that effects the gut a few years after getting me/cfs

I remember about a year after getting me/cfs a few years back I took some C60 carbon and initially whether I ate pasta or lots of food the stomach was relatively flat

Resistant starch cold potatoes for prebiotics
Kambucha
Greek yogurt
Anti-microbials/vitals pau d arco,lemon balm Q

Seem to not make difference sometimes a little bit of milk with coffee can help shrink the gut a little

Its seems me/cfs effects metabolism and it's probably not good to rely on things that are closer to stimulants
for a process

Perhaps there are other ways to improve metabolism.

 

[EddieB]

Looking into this myself. The only thing that makes sense is dysbiosis/ bacterial imbalances.

Not to say all me/cfs is due to this, but since many suffer with gut issues, it has to be at least in part a contributing factor.

 

[Sledgehammer]

At times I've starved myself and felt worse for it as the blood sugars went haywire.
Other times I will eat a little in the morning and feel fine with it. Other times it'll knock me out and I'll have to rest / sleep. Even chomping on an apple can cause nausea forcing me to the sofa or bed for an hour or so.

I've tried cutting out stuff, adding others. Every day is different.

 

[EddieB]

Every day is different.

I’ve tried every diet/ food elimination there is, with no positive results. I don’t eat crap (sugars, bad fats, processed foods) but beyond that it doesn’t seem to matter that much. I do not have celiac/ gluten allergy.
Diet can have a profound effects on those.

Working on doing more extensive gut testing.

 

[Sledgehammer]

I’ve tried every diet/ food elimination there is, with no positive results. I don’t eat crap (sugars, bad fats, processed foods) but beyond that it doesn’t seem to matter that much. I do not have celiac/ gluten allergy.
Diet can have a profound effects on those.

Working on doing more extensive gut testing.

I've done exactly the same with little or no effect. No junk food, sugar etc either.
One thing is the bloated then deflation issue which I find odd.

A specialist said it sound like IBS. I'd say that and a lot more. He had no understanding of CFS at all so I know I'm in for a tough time.

Like you I'm experimenting all the time. One food that didn't affect me was organic porridge oats with warm almond milk and topped with honey, absolutely delicious and keeps you filled up for the best part of the day. Will keep at it at see what happens long term.

 

[EddieB]

A specialist said it sound like IBS. I'd say that and a lot more.

Well yours sounds a lot like mine, and mine sounds a lot like a bacteria imbalance. I’m in process of doing some testing to try and figure it out.

 

[Sledgehammer]

Well yours sounds a lot like mine, and mine sounds a lot like a bacteria imbalance. I’m in process of doing some testing to try and figure it out.

Please let me know how the testing goes.

 

[EddieB]

Please let me know how the testing goes.

I will.

What I’ve done recently,
- Yeast/ candida/ parasite culture stool test, negative, but slight elevated enterococcus
- Yeast/ candida blood test, negative, but high allergy to molds
- Endoscopy, mild gastritis
- Comprehensive stool test (GI map), waiting for results
https://www.diagnosticsolutionslab.com/tests/gi-map

What I’m working on,
- IBS Smart test - detects food poisoning antibodies
https://www.ibssmart.com/
- Triple gas sibo test - Trio Smart
https://www.triosmartbreath.com/

 

[Sledgehammer]

I will.

What I’ve done recently,
- Yeast/ candida/ parasite culture stool test, negative, but slight elevated enterococcus
- Yeast/ candida blood test, negative, but high allergy to molds
- Endoscopy, mild gastritis
- Comprehensive stool test (GI map), waiting for results
https://www.diagnosticsolutionslab.com/tests/gi-map

What I’m working on,
- IBS Smart test - detects food poisoning antibodies
https://www.ibssmart.com/
- Triple gas sibo test - Trio Smart
https://www.triosmartbreath.com/

Thanks for the links it's a great help. I'm in Blighty and was just jumping from one testing site to another not knowing what I was looking for. They don't make it easy here...

 

[EddieB]

Blighty

Blighty=Great Britain, got it. Hadn’t heard it called that before...

But don’t feel alone. The doctors here know nothing about these conditions, and the few that do are impossible to get to. Thankfully these are mostly home tests, that will hopefully prove be reliable.

Would there be a problem with customs or the mail if you were to want to do any of these tests, sent to the US?

 

[Sledgehammer]

Blighty=Great Britain, got it. Hadn’t heard it called that before...

But don’t feel alone. The doctors here know nothing about these conditions, and the few that do are impossible to get to. Thankfully these are mostly home tests, that will hopefully prove be reliable.

Would there be a problem with customs or the mail if you were to want to do any of these tests, sent to the US?

Sorry should have said UK. (Been at the Blackadder Goes Forth re-runs again)

It's the same situation here, we are tossed from one dept to another.
Most of it comes down to cost. The NHS won't pay for a lot of these tests leaving people to either suffer or find the cash and have a private lab do the testing instead.

I managed to find a few labs in the UK and will contact them for prices.
Failing that I will contact the labs in the US and take it from there.

Thank you again for the information!

 

[Sledgehammer]

Comprehensive stool test (GI map), waiting for results

This came top of my list so I ordered the kit today from a lab in the UK. GI360 (RG)
List is below. It's a copy and paste from the labs website.

Actinobacteria Actinomycetales Akkermansia muciniphila Alistipesascaris lumbricoides BacilliBacteroidesbacteroides fragilisBacteroides zoogleoformansbactroides stercorisBifidobacteriumcapillaria hepaticacapillaria philippinensisCatenibacteriumcestodes - tapeworms (diphyllobothrium latumchilomastix mesniliClostridia ClassClostridium difficile (Toxin A&B)clostridium L2-50Dialister invisusdialister invisus & megasphaera micronuciformisdientamoeba fragiisDorea sppendolimax nanaentamoeba colientamoeba hartmanniEntamoeba histolyticaentamoeba histoytica/ entamoeba disparentamoeba polckienterobius vermicularisEscherichiaEubacteriumeubacterium halliieubacterium rectaleeubacterium siraeumFaecalibacteriumFirmicutesGiardia duodenalisGiardia duodenalis (AKA inestinalis & Lamblia)isospora belliLachnospiraceaeLactobacilluslactobacillus ruminis & pediococcus acidilcticilodamoeba butschliiMycoplasma hominisnematodes - round wormsParabacteroidesparasites (crypotsporidium (C. parvum and hominis)pathogenic bacteria (campylobacterpentatrichomonas hominisphascolartobacterium spp. thermophilus & S. Sanguinisprabacteroides johnsoniiProteobacteriaprotozoa (balantidium coliretortanmonas intestinalisRuminococcusStreptococcusstreptococcus agalactiae & eubacterium rectalestreptococuss saliarius ssp. thermophilustrematoes - flukes (clonorchis sinensisVeillonellaviruses (adenovirus F40/41

 

[Sledgehammer]

Blighty=Great Britain, got it. Hadn’t heard it called that before...

But don’t feel alone. The doctors here know nothing about these conditions, and the few that do are impossible to get to. Thankfully these are mostly home tests, that will hopefully prove be reliable.

Would there be a problem with customs or the mail if you were to want to do any of these tests, sent to the US?

Testing kit arrived yesterday with four sample tubes, some more kit, and a lot of paperwork.
After reading through the procedures I noticed it is actually a US based company and the lab in the UK carry out the tests.

Regenerus Labs, ever heard of them?

 

[ruben]

Just wondering what the cost of these uk comprehensive stool tests is. Thanks in advance

 

[Sledgehammer]

Just wondering what the cost of these uk comprehensive stool tests is. Thanks in advance

£355 all in. GI360 is considered the 'complete' test so the price made sense.

 

[ruben]

Ok. Thanks. So assuming then someone undertake these tests, do you think there's a chance of a definitive way forward as a result of the findings.

 

[EddieB]

So assuming then someone undertake these tests, do you think there's a chance of a definitive way forward as a result of the findings.

If you can find the right person to interpret the results. There are some members here that may be able to help with that. Better still is to have a practitioner to work with, if you can find one.

 

[Sledgehammer]

Ok. Thanks. So assuming then someone undertake these tests, do you think there's a chance of a definitive way forward as a result of the findings.

I'd go with what EddieB said. Of course you'd have to speak with your NHS GP first to see what help could be given if your results were showing you have a gut issue after the test.

For me, assuming my results come back with all sorts of horrors, removes all doubts in my GP's head that their isn't an issue, and it's not all in my mind.

 

[EddieB]

i don’t want to be disappointing, but these tests can bring as many questions as answers. Unless they find something obvious/ definitive (like parasites or candida), the rest of the information may be normal.

At least that has been the case for myself in the past. I felt certain that something would show up, explaining
why I’m so sick, but only minor imbalances were found.

However, those tests were done a few years ago, and my symptoms are much worse now. I am awaiting this GI MAP test that is going to be reviewed by someone that understands what they are looking at. Well, supposedly.

I will report everything I learn here, hope we can help each other.

 

[ruben]

Yes, nice one. Hopefully we can help each other as you say. I spoke to a doctor the other week on the phone saying how much I was struggling. I'd never spoken to this doctor. He sounded quite young and he was totally on our wavelength. Quite simply saying that we're genuinely sick but science has struggled for answers. When I came off the phone I felt quite elated.