Leaky Gut

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mumof5
mumof5 Posts: 328 Member
Starting the auto immune diet tomorrow. Hoping to get some energy back!! I'd love to hear from anyone who has experience with it :)
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  • ILiftHeavyAcrylics
    ILiftHeavyAcrylics Posts: 27,732 Member
    edited February 2015
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    I've only ever heard of "leaky gut" in alt-med settings and I'm not super-familiar with it, except that a google search reveals a ton of woo. It seems to be mostly a construct of nutritionists. Did your rheumatologist diagnose it?

    http://www.nhs.uk/conditions/leaky-gut-syndrome/Pages/Introduction.aspx
    Proponents of 'leaky gut syndrome' claim that many symptoms and diseases are caused by the immune system reacting to germs, toxins or other large molecules that have been absorbed into the bloodstream via a porous ("leaky") bowel.

    There is little evidence to support this theory, and no evidence that so-called "treatments" for "leaky gut syndrome", such as nutritional supplements and a gluten-free diet, have any beneficial effect for most of the conditions they are claimed to help.

    What's the "autoimmune diet"? Every rheumatologist I have ever seen has told me that special autoimmune diets are bunk, and to just eat a balanced diet with lots of fruits/veggies, everything else in moderation. The same diet they would recommend to anyone else.
  • 3laine75
    3laine75 Posts: 3,070 Member
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    I'm guessing a diagnosis of 'leaky gut' comes with a price tag along with the autoimmune diet.

    I call bunk too, just eat a normal balanced diet as stated above :)
  • mumof5
    mumof5 Posts: 328 Member
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    Actrually ther was no price tag attached. And the diet also has no price tag. Im just willing to give anything a go - cant hurt.
  • PikaKnight
    PikaKnight Posts: 34,971 Member
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    mumof5 wrote: »
    Actrually ther was no price tag attached. And the diet also has no price tag. Im just willing to give anything a go - cant hurt.

    So was this recommended by a doctor? Have you a seen a doctor about your issues?
  • MarziPanda95
    MarziPanda95 Posts: 1,326 Member
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    If your bowel actually did 'leak' then this would be similar to a perforated bowel. You would have bad abdominal pain and then blood poisoning. If you haven't, then see your doctor about your symptoms. My haemotologist who deals with my autoimmune disease says there's nothing I can eat to make it better or worse.
  • NiftyPineapple914
    NiftyPineapple914 Posts: 16 Member
    edited February 2015
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    sorry you've been met with such ingorance. i've spent years researching this, including harvard professor's work and mayo clinic articles and medical papers which tie it all together. its a thing and i have it. I tried for a year with fodmaps, but the only thing that is helping is avoiding my triggers (dairy, grains/yeast, and insoluble fiber), and taking l-glutamine and beef gelatine morning and night. all the supplements in the world wont work if the gut is continuously being aggravated.
  • Kymmu
    Kymmu Posts: 1,650 Member
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    I had symptoms of leaky gut. I went on the FODMAPS site and learned what upset my stomach. I did it for a year and added pro biotics. I am feeling a whole lot better now.
  • ILiftHeavyAcrylics
    ILiftHeavyAcrylics Posts: 27,732 Member
    edited February 2015
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    sorry you've been met with such ingorance. i've spent years researching this, including harvard professor's work and mayo clinic articles and medical papers which tie it all together. its a thing and i have it. I tried for a year with fodmaps, but the only thing that is helping is avoiding my triggers (dairy, grains/yeast, and insoluble fiber), and taking l-glutamine and beef gelatine morning and night. all the supplements in the world wont work if the gut is continuously being aggravated.

    Would you be willing to share some of your sources? I couldn't find anything that wasn't super sketchy.

    Eta I'm a skeptic but I'm also a person who suffers from an undiagnosed and possibly undiagnosable medical condition. I don't think medical science has 100% of things figured out. But I just think that those of us with conditions that aren't explained have to be wary of people looking to take advantage of that desperation.
  • ILiftHeavyAcrylics
    ILiftHeavyAcrylics Posts: 27,732 Member
    edited February 2015
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    Thanks. Will read.

    eta: Okay, I've read. Thanks for obliging.

    All of the reputable sources here are talking about celiacs, IBS, or other known health conditions. OP didn't say because she didn't answer my questions, but she seems to be talking about leaky gut syndrome, which is different from intestinal permeability due to known disease as far as I'm aware. And, like I said, it's not my claim that we know everything and that there aren't undiscovered or poorly understood medical conditions-- just that we shouldn't be claiming to understand or be able to treat things prematurely.

    That last link is SUPER sketchy. Super. Its main source is an alt-med journal, which just supports my point.

    But, it doesn't matter what I think. OP I hope this diet, whatever it is, helps you feel better.
  • NiftyPineapple914
    NiftyPineapple914 Posts: 16 Member
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    No; leaky gut IS intestinal permeability. The root cause will differ, eg IBS triggers, coeliac, ibd, etc. Leaky gut syndrome is the term given to the broad range of symptoms. The causes vary.
  • mumof5
    mumof5 Posts: 328 Member
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    Leaky gut was suggested by my dr and occupational therapist. My gut is not literally leaking. I am not absorbing all of the nutrients in the food I eat. I totally understand that this is difficult for people to understand since a blood test will not diagnose it. It is just food I am talking about so why not give it a go? If changing my diet does nothing then I have lost nothing. If it helps with just 1 symptom then yay!! Nobody is taking advantage of me. I am sorry for any of you that have trouble seeing outside the box.
  • Need2Exerc1se
    Need2Exerc1se Posts: 13,575 Member
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    mumof5 wrote: »
    Actrually ther was no price tag attached. And the diet also has no price tag. Im just willing to give anything a go - cant hurt.

    If it's a sensible balanced diet then you are correct that it's unlikely to hurt. But if it's an unbalanced fad diet, it might hurt. If diet wasn't tied to health there would be no need to give an alternative diet a go.
  • ILiftHeavyAcrylics
    ILiftHeavyAcrylics Posts: 27,732 Member
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    No; leaky gut IS intestinal permeability. The root cause will differ, eg IBS triggers, coeliac, ibd, etc. Leaky gut syndrome is the term given to the broad range of symptoms. The causes vary.

    I was looking for where I found the information yesterday-- I can't remember if this was it.
    Yet another, "leaky gut syndrome," is described by proponents as a condition in which the intestinal lining becomes irritated and porous so that unwanted food particles, "toxins," bacteria, parasites, and "Candida" enter the bloodstream and result in "a weakened immune system, digestive disorders, and eventually chronic and autoimmune disease." Treatment of this alleged condition can include dietary changes (such as not eating protein and starch at the same meal); "cleansing" with herbal products; "reestablishing good balance" of intestinal bacteria; and supplement concoctions claimed to strengthen and repair the intestinal lining. Note: Some medical scientists use the term "leaky gut" for problems associated with abnormal intestinal permeabilty, but "leaky gut syndrome" is not one of them.

    http://www.quackwatch.com/01QuackeryRelatedTopics/fad.html

    Sounds like we might just have a difference of terminology. Or rather, the same terminology used to describe two separate ideas.
  • JPW1990
    JPW1990 Posts: 2,424 Member
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    I think the leaky gut diagnosis is at the stage now where fibro was 10 years ago. It used to be "common knowledge" that fibromyaglia didn't exist, and it was just all in people's heads. Except, it's not, and there are researchers all over the place still trying to pin down the best way to treat it. The side effect of science finding better and more accurate ways to analyze aspects of health is the discovery of causes and symptoms people couldn't isolate before. Unfortunately, the other side effect is skepticism that if it was real, someone would've isolated it sooner.
  • ILiftHeavyAcrylics
    ILiftHeavyAcrylics Posts: 27,732 Member
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    JPW1990 wrote: »
    I think the leaky gut diagnosis is at the stage now where fibro was 10 years ago. It used to be "common knowledge" that fibromyaglia didn't exist, and it was just all in people's heads. Except, it's not, and there are researchers all over the place still trying to pin down the best way to treat it. The side effect of science finding better and more accurate ways to analyze aspects of health is the discovery of causes and symptoms people couldn't isolate before. Unfortunately, the other side effect is skepticism that if it was real, someone would've isolated it sooner.

    I was actually thinking about that this morning while I was reading. I've got a fibro diagnosis so I get that. I really really do. Although honestly I'm still not convinced that's what I have, but that's another story.

    The problem is that you've got a bunch of people trying to treat this thing without having enough evidence a.) that it even exists b.) what causes it and c.) how it CAN be treated. It sucks for patients who are waiting for science to catch up, if that's what we're looking at here. But it's not ethical for doctors to be diagnosing/offering treatment when the jury isn't even out yet, imo.

    And again, not talking about intestinal permeability as the result of other known medical issues for which there are treatments.

    There's a TON of woo out there, some of it harmful or expensive, aimed at people with medical conditions of all kinds. It's kind of a hot-button issue for me. Not trying to be a jerk, I swear.
  • JPW1990
    JPW1990 Posts: 2,424 Member
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    JPW1990 wrote: »
    I think the leaky gut diagnosis is at the stage now where fibro was 10 years ago. It used to be "common knowledge" that fibromyaglia didn't exist, and it was just all in people's heads. Except, it's not, and there are researchers all over the place still trying to pin down the best way to treat it. The side effect of science finding better and more accurate ways to analyze aspects of health is the discovery of causes and symptoms people couldn't isolate before. Unfortunately, the other side effect is skepticism that if it was real, someone would've isolated it sooner.

    I was actually thinking about that this morning while I was reading. I've got a fibro diagnosis so I get that. I really really do. Although honestly I'm still not convinced that's what I have, but that's another story.

    The problem is that you've got a bunch of people trying to treat this thing without having enough evidence a.) that it even exists b.) what causes it and c.) how it CAN be treated. It sucks for patients who are waiting for science to catch up, if that's what we're looking at here. But it's not ethical for doctors to be diagnosing/offering treatment when the jury isn't even out yet, imo.

    And again, not talking about intestinal permeability as the result of other known medical issues for which there are treatments.

    There's a TON of woo out there, some of it harmful or expensive, aimed at people with medical conditions of all kinds. It's kind of a hot-button issue for me. Not trying to be a jerk, I swear.

    I think there's room for treatment without declaring something an ultimate answer, of symptoms, if nothing else. Mayo Clinic approach vs Dr. Oz, for lack of a better comparison. Waiting around for an answer sucks, especially when you know it will probably be years before you have one. I'm currently stuck in that boat - there's not a whole lot of research on my condition, and what little there is focuses on a different variation than what I have, so the best answer I can ever get is "maybe."
  • ILiftHeavyAcrylics
    ILiftHeavyAcrylics Posts: 27,732 Member
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    JPW1990 wrote: »
    JPW1990 wrote: »
    I think the leaky gut diagnosis is at the stage now where fibro was 10 years ago. It used to be "common knowledge" that fibromyaglia didn't exist, and it was just all in people's heads. Except, it's not, and there are researchers all over the place still trying to pin down the best way to treat it. The side effect of science finding better and more accurate ways to analyze aspects of health is the discovery of causes and symptoms people couldn't isolate before. Unfortunately, the other side effect is skepticism that if it was real, someone would've isolated it sooner.

    I was actually thinking about that this morning while I was reading. I've got a fibro diagnosis so I get that. I really really do. Although honestly I'm still not convinced that's what I have, but that's another story.

    The problem is that you've got a bunch of people trying to treat this thing without having enough evidence a.) that it even exists b.) what causes it and c.) how it CAN be treated. It sucks for patients who are waiting for science to catch up, if that's what we're looking at here. But it's not ethical for doctors to be diagnosing/offering treatment when the jury isn't even out yet, imo.

    And again, not talking about intestinal permeability as the result of other known medical issues for which there are treatments.

    There's a TON of woo out there, some of it harmful or expensive, aimed at people with medical conditions of all kinds. It's kind of a hot-button issue for me. Not trying to be a jerk, I swear.

    I think there's room for treatment without declaring something an ultimate answer, of symptoms, if nothing else. Mayo Clinic approach vs Dr. Oz, for lack of a better comparison. Waiting around for an answer sucks, especially when you know it will probably be years before you have one. I'm currently stuck in that boat - there's not a whole lot of research on my condition, and what little there is focuses on a different variation than what I have, so the best answer I can ever get is "maybe."

    On that at least we agree. I think at this point there likely is no answer for me, years away or otherwise.

    I'm a little torn on the other part atm. But every doctor I've seen has told me the same thing. It's obvious there's a problem. Steroids would probably help. But without a diagnosis they can't treat.
  • RodaRose
    RodaRose Posts: 9,562 Member
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    I had one of those conditions that was hard to diagnose and harder to treat.
    I did eventually get a solid diagnosis but not a good treatment plan because experts did not agree -- so through trial and error I came up with my own.
    My point is that we can make positive changes without getting approval from experts.
  • shaumom
    shaumom Posts: 1,003 Member
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    I'm a little torn on the other part atm. But every doctor I've seen has told me the same thing. It's obvious there's a problem. Steroids would probably help. But without a diagnosis they can't treat.

    ...this is gonna be out of the blue, but I thought I'd just link to something you could check out that could COMPLETELY unrelated. >_< It's a rare disorder called a Mast Cell Activation Disorder that experts are coming to believe is likely much less rare, and a lot more 'rarely diagnosed,' because there is so much ignorance about it. And sorry for the long link - it's hard to find now. You may be able to search for it by name: A concise, practical guide to diagnostic assessment for mast cell activation disease in the WJH (world journal of hematology).
    (http://webcache.googleusercontent.com/search?q=cache:LdxvLORbuX4J:www.wjgnet.com/esps/DownLoadFile.aspx%3FType%3DMember%26FilePath%3DUserFiles%255CScientist%255C00058453%255CWJH-3-1.pdf+&cd=1&hl=en&ct=clnk&gl=us )

    Many, many of the symptoms are the same as fibro. I can pretty much guarantee no doctor would think to test you for it unless you suffer from anaphylaxis or hives and rashes (which many of us with this do not). And likely not even then.

    there are some support groups on Facebook (look for mcad, mcas, mast cell disorder, or mastocytosis - a related disorder) that can help answer questions, and find doctors who know enough about it to do the tests.

    Like I said, this is out of the blue, and might be nothing related at all, but I was literally in the same boat, with a diagnosis that didn't quite seem to fit, and I only finally got diagnosed when I ran across information in a setting like this, and finally got tested.

    Wishing you luck!