Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Would a scope of the upper gut be worthwhile?

Discussion in 'General ME/CFS Discussion' started by overtheedge, Jun 28, 2017.

  1. overtheedge

    overtheedge

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    Think my gut may be at the core of the CFS I'm dealing with, it was the first time I got over CFS

    I have a bit of gut pain now and then; all stools are pale; I need to eat large amounts of food to fill up; rectal itching; get immediate improvement whenever I take powdered nutrients be it whey protein, powder from various kinds of healthy grasses, or powdered rations which I figure is because it is easy for the body to digest; gut pain sometimes

    Could an EGD reveal anything useful about my gut? Anything that I could act on to try and fix it or would it just give me some result I couldn't do anything about?

    Any suggestions for gut tests besides an EGD?
     
  2. caledonia

    caledonia

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    I had one of those one time. I think they can see physical things like ulcers or esophageal erosion, but not things at the cellular level like leaky gut, candida, gluten intolerance or whatever it is you have.

    My suggestion would be to get a stool test, and do the 4R Gut Rebuilding Program. I have some more info in my signature link on that.

    I believe the pale stool is either a liver or bile issue, and you can try liver support like milk thistle or bile support like ox bile.
     
  3. echobravo

    echobravo Keep searching, the answer is out there

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    Norway
    Artichoke extract (Jarrow has one) is supposed to increase bile.

    Does digestive enzyme improve your digestion?

    Would think the CSA stool test would tell you more abt the state of your digestion (candida, infection, dysbiosis) than any visual inspection..

    Any leaky gut symptoms? Autoimmunity?

    Lymph system congested?
     
    Basilico likes this.
  4. ljimbo423

    ljimbo423 Senior Member

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    I think you might be interested in this article. It explains in detail how the gut (SIBO/dysbiosis) can cause mito dysfunction, fatigue, etc. It is written to explain fibromyalgia but I believe cfs and fibro are the same illness expressed in different ways. I have both and have since I got cfs.

    I have been treating dysbiosis for almost 4 months now and have improved significantly! I went for a walk to the store the other day, that was about 1 1/2 miles. It took me 30 minutes.

    I had no PEM one day later and the PEM I had 2 days later was about a 2, on a scale from 0 to 10! A few months ago, before treatment, my PEM would have been about a 6. I also only need 7 1/2 hours of sleep a night now to function well, I used to need 8 1/2 to 9. Many other improvements too.

    The second picture in the article, gives you a basic explanation of how SIBO/dysbiosis can cause pain, fatigue, mito. dysfunction and other symptoms.
     
    Timaca and echobravo like this.
  5. Silence

    Silence

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    the gastro could find something, perhaps, on a microscopic level, if nothing is visualized. Have you had your bilirubin checked. Also might want to check bile acids. You could also ask for an ultrasound of your liver, pancreas, and gallbladder its much less invasive and easy to do. In the beginning of my illness I also had itchy anus. I later found that it was most likely a yeast. I have GI issues due to candida albicans and dysbiosis.

    It really depends on how bad your gut issues are. Do you have diarrhea or constipation? food intolerances?
    If you are in severe CFS state I would advise against it as it can be too taxing on your body.
     
  6. kangaSue

    kangaSue Senior Member

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    I've had severe gastroparesis for 17 years, all an upper scope has revealed with symptoms at their worst is mild gastritis.

    A scope is probably more useful when symptoms are of a more persistent nature but it can be a powerful tool in chronic conditions with some gut involvement if they were going to give you a full thickness biopsy at the same time for analysis, a sample of which I would have no hesitation in having sent to Dr Chia's lab for enterovirus testing.

    If you're stool look greasy too or there is an oily slick look to the water in the toilet bowel, try a pancreatin supplement to aid with fat digestion.
     
  7. bombsh3ll

    bombsh3ll Senior Member

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    Have you seen a gastroenterologist? You could have a malabsorption condition, inflammatory bowel condition or coeliac disease, and pale stools can sometimes indicate obstruction of the flow of bile, so I would also consider blood tests to check the health of your liver & pancreas, ando/or an upper abdominal ultrasound if the pale stools persist. I agree if scopes are done, biopsies should be taken which can show pathology not immediately visible Upper and lower scopes could give a more complete picture. If you can, I would advise seeing a gastroenterologist.
     
    ryan31337 and echobravo like this.
  8. overtheedge

    overtheedge

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    @ljimbo423 I've been tryin to treat SIBO for some time now, every time I have a gut test done it comes back with a different set of pathogens, that is, after having gone through all sorts of antimicrobials, antifungals and probiotics

    @Silence My bilirubin has been checked a number of times, it used to be high back before I started using Betaine HCL and pancreatic enzymes which fixed my IBS/severe chronic constipation years ago and was probably the cause of my CFS going into remission several months later, might never have had to deal with CFS again if I hadn't immediately started workin again after getting well and burnt myself out. Nowadays the bilirubin is borderline high but never actually high.

    I'm not sure whether or not i've had a bile acids test, have lots and lots of tests and am too tired right now to look through them. I'd definitely be interested in doing one though, don't know much about the test, what do I do if it's abnormal? Is the analyte just called Bile Acids on the test or are there specific ones?

    I had an ultrasound done of my liver, pancreas, and gallbladder years ago when the chronic constipation was going on, it said the head of the pancreas was slightly smaller than usual, might have had something to do with why the pancreatic enzymes ended up helping me so much, though, I didn't know to take the enzymes because of it.

    @kangaSue Have you tried anything for your stomach acid levels? Low stomach acid can cause gastroparesis from what I've read.

    What do you do if an enterovirus showes up? Bacteria and fungus are the main ones I hear about in the gut, I wouldn't know how to handle a virus
    There isn't any greasiness or oiliness with movements, does that mean I have an acceptable level of bile being released?

    @bombsh3ll I saw a gastroenterologist once years ago, he wasn't much help, ran a basic CBC and told me to use miralax, everytime i called him up and said it wasn't working he told me to up the dosage, after a month or more I gave up trying to get help from him, was one of the reasons I turned to alternative medicine, well, among other doctors passing me off too.
    Do you know what kind of tests specifically, I think I have had one done to detect celiac which came up negative, I'd be interested to know how to test for malabsorption as I suspect it is a problem

    when I said pale stools I think I might have given the wrong impression, I'm not sure, they are a golden brown in color, always a light brown, never white or anything though, certainly isn't as dark as when I was in a non CFS state. A few times during this illness I have started feeling really good and have had normal colored bowel movements during that time, don't know which caused which though, looking through my health journal I couldn't find any association with food or meds from the time.

    Things tested to help my gut that haven't shown effect:
    Ox Bile
    Digestive bitters
    pumpkin seeds
    artichoke hearts
    artichoke extract
    apple cider vinegar
    food allergy diet
    aloe vera
    slippery elm
    marshmallow root


    NAC and Mastic Gum both made me feel real good for a month or so then stopped working and have never again shown effects, NAC may have been acting on glutathione but I've read it is also a good supplement for killing gut pathogens

    DGL cured the chronic constipation I had when this most most recent onset of CFS began and I don't need to take it anymore though I've been considering returning to it in case it was doing something else good for me besides improving regularity

    Berberine normalized bowel movement color for a few days and also made me feel real good but made my gut burn a few hours after taking, i tried it again and again and all kinds of related supplements without any success at bringing back the gut normalization
     
  9. bombsh3ll

    bombsh3ll Senior Member

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    I am totally with you on getting brushed off by specialists who aren't really interested in helping! Some of these tests are quite complex and as a GP we would normally refer to gastroenterology, but I did find this link detailing some of the relevant tests. For coeliac you have to be INCLUDING gluten in your diet for around 6 weeks prior, or it can be falsely negative.

    http://www.bsg.org.uk/pdf_word_docs/malabsorbtion.pdf
     
    overtheedge likes this.
  10. ljimbo423

    ljimbo423 Senior Member

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    I don't think there are any tests to determine the type of bacteria that are causing SIBO. When you have a stool test done, you get a basic picture of all of the bacteria from both the small intestine and large intestine.

    I will share with you what I believe are the most important things that have and are helping me. #1- diet- 95% starch free. #2- Rifaximin- I took a 10 day course and a 15 day course at 1,200mg a day.

    That brought down the bacterial overgrowth and allowed me to tolerate a high enough dose of antimicrobial herbs like oil of oregano, berberine, cinnamon, thyme, amla and grape seed extract. If you can't get Rifaximin, high doses of herbs have been shown to work just as well.

    #3- I take a high dose probiotic (60 billion cfu). That is basically my protocol. I have learned through trail and error, that a very low starch diet and fairly high doses of STRONG antimicrobial herbs, long term, are absolutely necessary to get rid of sibo.

    By long term, I mean at least 6 months or even longer. I'm 4 months in and just really noticing some big improvements. I have been very strict with both diet and anti-microbials but I also got a big jump start with the Rifaximin.

    Like I said though, if you can tolerate fairly high doses of antimicrobial herbs, they are just as effective, but take longer to work. I think you will need very strong antimicrobials like oil of oregano, neem, thyme, cinnamon extract, at fairly high doses to get sibo/dysbiosis under control, based on my experience, but it IS do-able!
     
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  11. kangaSue

    kangaSue Senior Member

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    Tried all the popular remedies everything makes my gut worse. Stopping acid blockers altogether see's me fronting up to ER a couple of days later with severe abdominal pain if I don't start taking the med again, they are fairly potent anti-inflammatories too.
    Enterovirus causing gastroparesis is found in some with CFS. Antivirals like acyclovir are one agent used for it.
    I think having a pale stool means there's not enough bile acid being produced.
     
    overtheedge likes this.

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