The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Gut issues cause pem?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Pink, Jun 15, 2018.

  1. Pink

    Pink Senior Member

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    Is it possible that digestion or gut issues cause pem?

    (I tried to read chris Armstrong's posts but I dont understand a word due to brain fog & lack of science)

    Can someone explain in very simple terms how my severe stomach issues can cause pem & what to do to fix it?

    I have eosinophilic esophagitis, gastroparesis; and some candida issues. I have a very hard time eating/digesting even little bits of food, and eating makes pem worse.

    My pem hits my head, my stomach & leaves me breathless and nauseous like I was punched in the stomach.

    I took both medications & probiotics to help my stomach issues but they did not work; and had no benefit on pem.
    I also tried diflucan plus candida diet 2 yes ago and it made me a lot sicker& pen much worse.
     
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  2. Wishful

    Wishful Senior Member

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    I'd say it's possible that gut issues can cause PEM, but PEM has other causes as well. I think my physically-induced PEM is caused by IFN-g resulting from damaged muscles. If so, it's not unreasonable for gut issues to produce IFN-g and other cytokines that trigger PEM. Eosinophilic esophagitis sounds like it could trigger PEM on its own. If you're taking medication for that, does it reduce the PEM severity? Hmmm, I'm not sure that PEM severity correlates with the trigger magnitude, or if it's more of an off/on thing.

    My ME/CFS started with a type IV delayed food sensitivity. I apparently managed to cure that sensitivity after 2.5 years by eating some curry made with canned coconut milk that turned out to be a bit 'off' (I thought the yellow tinge was due to it being a cheap Chinese product). It gave me a typical case of food poisoning, which emptied my intestinal tract quite effectively. My guess is that it flushed out enough of a species of bacteria that was causing the food sensitivity that my microbiome was able to recover properly. Antibiotics, anti-candida treatments, and probiotics had no effect on the sensitivity, but the brute-force flushing out of food poisoning did the trick. I hesitate to recommend experimenting with food poisoning, but if you are suffering badly enough from something in your microbiome, it might be something to consider. It is possible to make the situation worse.

    It's possible it was something in coconut milk, rather than the food poisoning itself, but I had other canned coconut milk during that period which didn't do anything for me. Maybe that particular batch contained a specific species of bacteria that was beneficial (maybe from rats or insects in the processing: it was a cheap brand).
     
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  3. Pink

    Pink Senior Member

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    @Wishful what are cytokines and ifn-g?

    Nothing has helped my eosinophilic esophagitis nor my gastroparesis; and my pem just gets worse.

    My stomach has always been sensitive since I was a kid.
    Add in 6 pregnancies of severe non stop vomiting (20 plus times a day for 9 months) means my stomach is seriously messed up.

    The only time I had relief from some exhaustion during a pregnancy was when I had a pic line with tpn so I got direct nutrition without including my stomach.
    However the pic got infected; my body turned septic and that was the end of the tpn.

    I tried using an elemental food powder but it made me vomit for hours afterwards.

    If there's any scientific studies about gut causing pem, I can show them to my dr.
     
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  4. Wishful

    Wishful Senior Member

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    Cytokines are chemicals produced by the immune system. They're used by cells to communicate: "attack cells showing this marker" or "viral invasion over, return to normal patrolling". IFN-g (interferon-gamma) is just one of hundreds (?) of cytokines.

    Your digestive tract certainly sounds like it's had a rough time. I'm not sure what to suggest for trying to heal it. I'll have to leave that to medical experts or people who have experience with doing it without doctors. Maybe there's a forum somewhere for people with that sort of problem?

    I haven't encountered any scientific studies about gut issues causing PEM. There aren't many papers on PEM in general. The present interest in research into ME/CFS is quite recent. There's no clinical test for PEM that I know of, so many doctors will probably say that PEM doesn't exist.

    Your problems make me want to show my appreciation for my digesting system for working properly. :thumbsup: We don't appreciate such things (normal function) until we don't have them any more.
     
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  5. Pink

    Pink Senior Member

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    Thanks @Wishful .
    Wasnt sure If Chris Armstrong was saying pem is caused by gut issues.
     
    alkt likes this.
  6. Runner5

    Runner5 Senior Member

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    GI issues will just make you very very tired and weak. I'm unsure that is the same thing as PEM though.

    I think the candida is from when things won't digest. It has food to eat. I think the modern idea of "sugar is feeding it it's going to kill you!" is wrong. I had the difulcan treatments and probably saw a dozen doctors about candida over the years.

    What I did for my GI was no meat, dairy, eggs or high protein items. A lot of all natural fiber (*no Fiber One bars, no Metamucil or supplemental fiber - all natural fiber from the food I eat) fiber in access of 40+ grams per day (most Americans don't reach a recommended 15...)

    This accelerated the transport of food from point a to point b to being very rapid and it fed my microbiome and kick started that to functioning again. I also use very basic digestive enzymes and L-Glutamine. Any high protein slows my transport time so I have to be careful of even things like Soy Milk.

    I had to also get off the PPI's and be careful to eat low fat. If I eat a lot of fat my stomach doesn't like to empty. My gallbladder chokes, it doesn't produce the enzymes I need to break it down.

    So pretty much my stomach and GI are healed until I start drinking coffee again - then I get a two week stomach ache and get to deal with that all over again. It's hard to keep away from caffeine for me *sigh* I think giving up meat, eggs, dairy, etc. etc. -- way easier then giving up coffee because I'm just always so darn tired.

    I'm sure people are tired of reading my GI treatment plan, haha, I've posted it a few times now, but everyone is a little different - like one person online ate nothing but Papaya for a month, another invested in a gallon of Kefir a day. For me it's a high fiber herbivorian existence that seems to make my microbiome happier. So I'm not saying it's the only way - I'm just surprised that after years of dealing with my GI issues something is finally helping.

    Bad news though - I still have CFS, but eh' Rome wasn't built in a day. I'll keep plodding along.
     
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  7. Pink

    Pink Senior Member

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    At this point I cant seem to eat much of anything at all.
    What I call pem by me is heavy weakness, breathlessness, dizziness, shakiness, and a sick twisting feeling in my stomach and head.
     
    alkt likes this.
  8. Mary

    Mary Moderator

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    You sound like how I was before I started taking betaine HCL with pepsin with meals. I had a hard time digesting protein - meat, etc. - and fats - it literally felt like food just sat in my stomach for hours. It was hard on my gallbladder and liver. And my chiropractor helped me discover that I was low in stomach acid. I started taking betaine HCL with pepsin with meals, particularly meals high in protein or that had some fat, and it was like a miracle. Food no longer just sat in my stomach.

    A simple test to check stomach acid is to dissolve 1/4 - 1/2 teaspoon of baking soda in 8 ounces of water and drink it on an empty stomach. If you don't burp within a few minutes, it can be an indication of low stomach acid. It is very common in people with ME/CFS. I take a boatload of supplement (which I tolerate well) but I still have to take betaine HCL with pepsin with meals. My doctor told me to take sufficient pills until I started to feel "acidy" - it sounds strange, but when it happened, I knew what it was, and then to back off by one pill. For me, that turned out to be 3 of these by Swanson Vitamins, before meals. If I'm just having salad or fruit I don't bother.
     
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  9. Mary

    Mary Moderator

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    @Pink - have you seen a naturopath or a functional medicine doctor? They might be better at getting at the root of your problems than regular MDs.

    A chiropractor who does muscle testing helped me a lot with my digestion, including problems with my gallbladder, liver, ileocecal valve.
     
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  10. Pink

    Pink Senior Member

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    Yes I have seen 2 functional medicine drs. Neither was able to help w the stomach other than take probiotics which made me worse.
     
    Mary likes this.
  11. ljimbo423

    ljimbo423 Senior Member

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    Hi Pink- I'm sorry you are struggling so much with this illness. This is what Chris Armstrong said about the gut causing PEM below. What he means is that a leaky gut allows too many toxins into the bloodstream.

    These toxins cause immune system activation, that causes PEM. So, yes he is definitely saying a messed up gut causes PEM.
    :)

    LINK Post # 102

    Jim
     
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  12. Wishful

    Wishful Senior Member

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    Armstrong sounds like he's fixated on gut issues being THE cause of ME/CFS. I think gut issues might be contributing to ME/CFS for some subgroups, but I haven't seen any convincing arguments supporting it. My physically-induced PEM is caused by muscle damage, probably involving elevated IFN-g production. I haven't had any correlation between PEM and changes in diet, bowel movements, antibiotics, or other things that affect gut function. The leaky gut hypothesis just doesn't seem to match real-life observations.

    Just to be contrary, I suppose it's possible that cumin blocks my PEM by affecting gut function in a favourable way. ;)
     
  13. JES

    JES Senior Member

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    Leaky gut as in increased intestinal permeability should be possible to improve with diet and certain supplement etc. Some doctor in this thread claimed slippery elm would "seal" a leaky gut. These leaky gut supplements did nothing for me and don't seem to help anyone else with ME/CFS either, so I agree with @Wishful that the evidence is not strong for this one.
     
  14. Pink

    Pink Senior Member

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    Ah pity I thought I finally found the key to my pem. Especially bec I have pem that affects my stomach.
     
  15. frederic83

    frederic83 Senior Member

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    Crotalus horridus 4CH then later a supplement called NK cell activator + inositol helped greatly my gut problem, I know can eat normally, no junk or too much gluten/milk though. I was only able to eat 5 foods.
     
  16. Wishful

    Wishful Senior Member

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    @Pink , are there any foods that you can eat without triggering the symptoms? During my type IV food sensitivity period, I could eat highly processed starches and sugars without triggering symptoms. Pretty much everything else would trigger symptoms. If even hypoallergenic foods trigger your symptoms, I suggest looking into other possibilities for triggers. Maybe something in your saliva, for instance, or the action of swallowing. Does swallowing water cause symptoms?

    Also, are these symptoms from eating identical to PEM caused from other triggers, such as physical activity? If they're significantly different, it might be a digestive disorder in addition to ME/CFS, and possibly diagnosable/treatable.
     
  17. Wolfcub

    Wolfcub Senior Member

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    Well, @Pink -I am not sure what comes first, the chicken or the egg, but I dd find my gut gets a bit iffy when I have some PEM going on.
    I have always had a healthy gut, never any problems of any kind. But now when I overdo it physically, I feel low in all directions, gut included sometimes. Like now, I have a twingy, gassy belly that's rumbling all over the place (not from hunger) all of a sudden for no other obvious reason than I did too much work today.
    It seems like PEM can involve all systems maybe (?)

    @Pink ....I definitely get the feeling that probiotics are not "one size fits all". How you find out which ones you should have and which not....I don't know, but here have been cases of people suffering symptoms like food poisoning from taking them. There might be a way to find out your own unique gut biome, but I don't know enough about it. I haven't risked trying them yet.
    I took probiotics once in a pill form, and they were fine, but that was years and years ago, and by what I've learned now, they were probably "dead" anyway.

    Sauerkraut and Olives sounds a good deal more tempting (I personally can't handle yogurt or kefir)....the problem is finding "live" food options. Most of the stuff on the store shelves has been pasteurised.
     
  18. Wishful

    Wishful Senior Member

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    We're still in the early stages of intentionally altering the microbiome for health. The few options available commercially are probably mostly marketing responses to research studies. If a study shows that acidophilus shows some benefit (maybe a 2% improvement in 14% of the test subjects), marketers trumpet how incredibly potent it is for health!!!! (Cures cancer and makes your pet love you too!) If a study shows that people in Slovakia have less cancer than people in the US and people there drink kefir (with no actual causal link proven), marketers will jump on that to sell kefir. However, the marketers probably aren't going to invest their profits in real research, and big pharma isn't going to invest in something they can't protect with patents. Honest research into microbiome treatments will probably take a long time.

    I do wonder whether people would actually benefit from eating some healthy garden soil, rich in bacteria and worm eggs. I'll wait for some enthusiasts to experiment and report on their results first. :)


    Hmmm, considering our distant ancestors's diets, I wonder if our guts might need occasional carrion. Just wondering... :rolleyes:
     
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  19. Pink

    Pink Senior Member

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    I cannot eat anything without feeling sick at all. I'm always nauseous with queasy twisting feeling in my gut.
    If I dont eat I get heart palpitations, otherwise I wouldn't eat it drink at all.
    Hot/cold no difference.

    My pem from activity, or talking, reading, watching tv, listening to music etc. also almost always manifests itself in my gut (along w breathlessness, heavy weakness etc.)
    And when I'm anxious it affects my stomach too.
     
  20. Wishful

    Wishful Senior Member

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    If you can't eat or drink even hypoallergenic things, it's likely linked to the muscular contractions or products released in response to swallowing something, or some other abnormal response to normal function. Have you been to a gastroenterologist about the problem? It sounds like a very serious problem, and needs the proper expert. Maybe it's as simple as some nerves signalling wrong after being reprogrammed by the constant vomiting.
     

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