What YOU should know about GLUTEN SENSITIVITY

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  • arewethereyet
    arewethereyet Posts: 18,702 Member
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    The good news is in about a year a new fad will come along, this one will die off, and everyone suffering from gluten sensitivity will be burdened with an entirely new disease they need to talk about constantly.


    yes, YESSSSSS, that's exactly what I'm thinking! The same people.

    NOPE. although I did joke about it, I have never in my life removed any full food group, even when dieting. Never in 53 years have I stopped eating something because they said it was bad for me. Never have I jumped on any train of thought.

    This is the first time in my life, and I have to say I ROLLED MY EYES when my son suggested it!. I am very happy it helps me to live a happier, healthier life.
  • arewethereyet
    arewethereyet Posts: 18,702 Member
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    I have found all of these articles that are suddenly coming out very interesting...because about 2 years ago, my (then) 14-year-old daughter started becoming very sick a lot of time time - bloating, diarrhea, vomiting, weight loss, etc. Over the course of those 2 years, we had her tested for everything under the sun - infections, parasites, allergies, etc. and everything came out negative.

    I tried to eliminate various things in her diet one by one - processed foods, dairy, high fructose corn syrup - all to no avail - but I did NOT want to eliminate gluten because I knew it would be HARD and I just didn't want to do it.

    However, finally, after things escalated to the point where she was down to 96 pounds and I was literally scraping her off the floor every day after she violently threw up and I actually was afraid she would die of malnutrition, we took gluten out of her diet.

    And she got better.

    I can't believe this is all in her head. But every test says she does not have celiac or an allergy. What gives?

    If your daughter is on a Gluten Free diet and you are testing for Celiac's then the results will come back negative. They need to be on a regular diet to be able to receive accurate results.

    Even the biopsy for Celiac's? (just curious)

    Not sure about the biopsy, just referencing the blood antibody test.

    http://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/

    I will look it up too, and follow your link. I think an educated patient is the best kind. :drinker: thanks for the info!

    Totally agree. Just be careful about what you read because you have to trudge through the bad and the good. I can't tell you how much crap I read when I was diagnosed with Hashimoto's. Most of the things I found were trying to sell me on stuff. It was always a relief to find stuff online that were legitimate science.

    My close friend on here has Hashimoto's. She had to research it herself and bring the info to her endocrinologist and then fight for the tests.

    Even when a friend tried to 'help her' it turned out to be trying to sell her something.
  • EllieB_5
    EllieB_5 Posts: 247 Member
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    The good news is in about a year a new fad will come along, this one will die off, and everyone suffering from gluten sensitivity will be burdened with an entirely new disease they need to talk about constantly.

    I am sure all my symptoms will miraculously disappear if they say that sugar is causing all my problems. I will immediately grab a loaf of bread to wolf down, and throw out all my foods that have sugar in my house.

    Really, Brett are you putting every person in this category simply because you do not believe it to be so?

    Actually, sugar does cause some of my GI symptoms and throwing refined sugars out the door has drastically improved said symptoms. But, I think this goes back to the whole FODMAP idea that gluten-sensitive sufferers seem to be ignoring again and again.

    EDIT:
    Totally agree. Just be careful about what you read because you have to trudge through the bad and the good. I can't tell you how much crap I read when I was diagnosed with Hashimoto's. Most of the things I found were trying to sell me on stuff. It was always a relief to find stuff online that were legitimate science.

    Use Google scholar. Rare to find anything but legit science.
  • FunkyTobias
    FunkyTobias Posts: 1,776 Member
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    The fact that 2 people (8%, as I recall from the paper) did show evidence of non-placebo, gluten-specific changes,

    You would think this, unless you understand how probabilities work.

    If each participant chose their response by coin toss, there would be a 1 in 4 chance that they would respond to gluten and not placebo.

    Given 37 participants, the probability that at least two participants had a gluten-specific reaction would be > 99.5%
  • _Pseudonymous_
    _Pseudonymous_ Posts: 1,671 Member
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    I have found all of these articles that are suddenly coming out very interesting...because about 2 years ago, my (then) 14-year-old daughter started becoming very sick a lot of time time - bloating, diarrhea, vomiting, weight loss, etc. Over the course of those 2 years, we had her tested for everything under the sun - infections, parasites, allergies, etc. and everything came out negative.

    I tried to eliminate various things in her diet one by one - processed foods, dairy, high fructose corn syrup - all to no avail - but I did NOT want to eliminate gluten because I knew it would be HARD and I just didn't want to do it.

    However, finally, after things escalated to the point where she was down to 96 pounds and I was literally scraping her off the floor every day after she violently threw up and I actually was afraid she would die of malnutrition, we took gluten out of her diet.

    And she got better.

    I can't believe this is all in her head. But every test says she does not have celiac or an allergy. What gives?

    If your daughter is on a Gluten Free diet and you are testing for Celiac's then the results will come back negative. They need to be on a regular diet to be able to receive accurate results.

    Even the biopsy for Celiac's? (just curious)

    Not sure about the biopsy, just referencing the blood antibody test.

    http://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/

    I will look it up too, and follow your link. I think an educated patient is the best kind. :drinker: thanks for the info!

    Totally agree. Just be careful about what you read because you have to trudge through the bad and the good. I can't tell you how much crap I read when I was diagnosed with Hashimoto's. Most of the things I found were trying to sell me on stuff. It was always a relief to find stuff online that were legitimate science.

    My close friend on here has Hashimoto's. She had to research it herself and bring the info to her endocrinologist and then fight for the tests.

    Even when a friend tried to 'help her' it turned out to be trying to sell her something.

    It really does suck... it seems like everyone I know is always "Maybe I have a thyroid thing and I can lose weight if I just get it diagnosed and perscribed skinny pills!!!" Hoping for thyroid issues is the silliest thing in the world. They suck and just make things harder, why would anyone want something like that just to excuse their inability to lose weight, right? lol.

    I feel for your friend. It's not the easiest thing to deal with but at least it's treatable! A pain in the butt but treatable!
  • liekewheeless
    liekewheeless Posts: 416 Member
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    I'm sure there are people who are sensitive to gluten. I'm also sure that not every one claiming to be sensitive to gluten is. Like the study showed, most were having problems with other ingredients.

    But, if a gluten free diet helps you, why does it matter. You should be able to eat like you want, fad or no fad. If you feel better... go for it!

    If like me you like breads etc. do try and see if other grains bother you. If it's just wheat,.. there are plenty of other tasty grains you can enjoy!
  • lthames0810
    lthames0810 Posts: 722 Member
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    Am I too late to get in?
  • l3long
    l3long Posts: 153 Member
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    BTW some of us have been gluten free long before it was a fad. I first eliminated gluten 25 years ago. It was not easy to eat gluten free then. thank goodness it is much easier now.
  • EllieB_5
    EllieB_5 Posts: 247 Member
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    The fact that 2 people (8%, as I recall from the paper) did show evidence of non-placebo, gluten-specific changes,

    You would think this, unless you understand how probabilities work.

    If each participant chose their response by coin toss, there would be a 1 in 4 chance that they would respond to gluten and not placebo.

    Given 37 participants, the probability that at least two participants had a gluten-specific reaction would be > 99.5%

    I thought a coin toss would be a 50/50 chance, cuz two sides. For a 1-in-4 chance wouldn't you need a four-sided coin?
  • arewethereyet
    arewethereyet Posts: 18,702 Member
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    The good news is in about a year a new fad will come along, this one will die off, and everyone suffering from gluten sensitivity will be burdened with an entirely new disease they need to talk about constantly.

    I am sure all my symptoms will miraculously disappear if they say that sugar is causing all my problems. I will immediately grab a loaf of bread to wolf down, and throw out all my foods that have sugar in my house.

    Really, Brett are you putting every person in this category simply because you do not believe it to be so?

    Actually, sugar does cause some of my GI symptoms and throwing refined sugars out the door has drastically improved said symptoms. But, I think this goes back to the whole FODMAP idea that gluten-sensitive sufferers seem to be ignoring again and again.

    EDIT:
    Totally agree. Just be careful about what you read because you have to trudge through the bad and the good. I can't tell you how much crap I read when I was diagnosed with Hashimoto's. Most of the things I found were trying to sell me on stuff. It was always a relief to find stuff online that were legitimate science.

    Use Google scholar. Rare to find anything but legit science.

    That really was not my point. :tongue: The implication was that anyone going on the GF 'bandwagon' has already jumped off a few in the past, and will jump on the next one that comes along.

    I believe that too much sugar can cause issues. Fortunately for me all the sugar I love is mixed with wheat products, therefore I am low on both!

    Thanks for the Google Scholar
  • arewethereyet
    arewethereyet Posts: 18,702 Member
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    Am I too late to get in?

    Nope! What do you have to add?:flowerforyou:
  • writer4him
    writer4him Posts: 225 Member
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    I have found all of these articles that are suddenly coming out very interesting...because about 2 years ago, my (then) 14-year-old daughter started becoming very sick a lot of time time - bloating, diarrhea, vomiting, weight loss, etc. Over the course of those 2 years, we had her tested for everything under the sun - infections, parasites, allergies, etc. and everything came out negative.

    I tried to eliminate various things in her diet one by one - processed foods, dairy, high fructose corn syrup - all to no avail - but I did NOT want to eliminate gluten because I knew it would be HARD and I just didn't want to do it.

    However, finally, after things escalated to the point where she was down to 96 pounds and I was literally scraping her off the floor every day after she violently threw up and I actually was afraid she would die of malnutrition, we took gluten out of her diet.

    And she got better.

    I can't believe this is all in her head. But every test says she does not have celiac or an allergy. What gives?

    If your daughter is on a Gluten Free diet and you are testing for Celiac's then the results will come back negative. They need to be on a regular diet to be able to receive accurate results.

    I knew that and we kept her on gluten until all of the testing was done.
  • QuietBloom
    QuietBloom Posts: 5,413 Member
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    1. Celiacs =/= gluten sensitivity.
    2. Gluten sensitivity =/= gluten allergy or wheat allergy.
    3. Yeah, pretty much the latest studies have shown that people are very bad when it comes to self diagnosis, which is the only way to test for 'gluten sensitivity'. Pretty much, if you *think* you have it, you will think you feel better when you don't eat it.

    Huh. Well for me, I called "BS" to my son when he suggested I remove gluten just to see, I laughed at him. Pointed out that it is just a fad, no truth or science behind it.

    Not eating gluten is one of the hardest things I have ever had to do. I love a hoagie, a plate of pasta. Can do without the cake and muffins, but it is really hard to not be in the party when everyone is eating it.

    I did not think in a million years removing any food item would make me feel better, but the truth is it did. I SO didn't believe that gluten was the cause of my problems that after 6 months I went back to eating gluten (slowly- slice of bread here, pasta there) By the end of 2 weeks I as back to higher symptoms.

    Some day we will know more thru science I am sure, but for now........for ME.........I will stay away from it and enjoy the side effects of my craziness

    There was no implication in my post that I think anyone who avoids certain foods that cause them discomfort is crazy. To me it sounds as if wheat might be an issue for you. If you feel better avoiding it, awesome.

    Would you mind telling me what 'better' means? I really am curious. :smile:

    Yes, certainly, I posted it earlier.

    Arthritis pain in hands and feet gone. Migraines with aura reduced significantly (there is a threshold factor here with many things adding to the actual onset of Migraine, so I do not say gluten caused mine, only that removing it reduced the threshold) and my IBS has gotten better.

    Mainly though the migraines and arthritis symptoms are the most significant.

    I have IBS and migraines am thinking of trying the low-FODMAP diet. Your problem might not be gluten sensitivity per se, but rather a sensitivity to fructose, fructans, galactans, polyols and or lactose. I too can eat breads up to a certain point, after which my IBS begins to kick in.
  • FunkyTobias
    FunkyTobias Posts: 1,776 Member
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    The fact that 2 people (8%, as I recall from the paper) did show evidence of non-placebo, gluten-specific changes,

    You would think this, unless you understand how probabilities work.

    If each participant chose their response by coin toss, there would be a 1 in 4 chance that they would respond to gluten and not placebo.

    Given 37 participants, the probability that at least two participants had a gluten-specific reaction would be > 99.5%

    I thought a coin toss would be a 50/50 chance, cuz two sides. For a 1-in-4 chance wouldn't you need a four-sided coin?

    Nope

    It was a crossover trial. Each subject had a gluten phase and a placebo phase. Say for the sake of simplicity that heads (H) represents a positive response and tails (T) represents a negative response.

    So we have four possible outcomes ( Gluten/Placebo)

    H/H
    H/T
    T/H
    T/T

    "Gluten specific" means they responded positive to gluten but not to placebo. (H/T)

    So each subject has a 1 in 4 chance of a gluten specific response.

    Now here's the fun part. To calculate the odds of at least two participants with a gluten specific reaction we treat it as a Bernoulli trial. So the probability that exactly N of them had gluten specific reactions is:

    P(n=N) = 37chooseN * (.25)^N * (.75)^(37-N)

    So P(N>=2) = 1 - P(N=0) - P(N=1)

    P(N=0) = 1*.25^0 * .75^37 = .000024
    P(N=1) = 37*.25^1 * .75^36 = .000293

    So the probability that at least two subjects had gluten specific reactions, purely by random chance is

    1-.000024-.000294 = .999682
  • Charlottesometimes23
    Charlottesometimes23 Posts: 687 Member
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    Late to the party as usual....

    I have no doubt that there's a gluten free bandwagon, but this study (which originates from Monash uni where the Fodmap diet was developed) doesn't convince me that NCGS doesn't exist. No doubt there's a lot of crossover between IBS and NCGS and FODMAPS may be the culprit in a lot of cases (btw going low Fodmap is successful in symptom reduction in only 70% ish of IBS sufferers if I remember rightly) but to say that NCGS doesn't exist based on this study is jumping to conclusions IMO.

    I'm going to see if I can access the full text of this 2014 review (NCGS critical review of current evidence)

    http://www.ncbi.nlm.nih.gov/pubmed/24667093
  • arewethereyet
    arewethereyet Posts: 18,702 Member
    Options
    1. Celiacs =/= gluten sensitivity.
    2. Gluten sensitivity =/= gluten allergy or wheat allergy.
    3. Yeah, pretty much the latest studies have shown that people are very bad when it comes to self diagnosis, which is the only way to test for 'gluten sensitivity'. Pretty much, if you *think* you have it, you will think you feel better when you don't eat it.

    Huh. Well for me, I called "BS" to my son when he suggested I remove gluten just to see, I laughed at him. Pointed out that it is just a fad, no truth or science behind it.

    Not eating gluten is one of the hardest things I have ever had to do. I love a hoagie, a plate of pasta. Can do without the cake and muffins, but it is really hard to not be in the party when everyone is eating it.

    I did not think in a million years removing any food item would make me feel better, but the truth is it did. I SO didn't believe that gluten was the cause of my problems that after 6 months I went back to eating gluten (slowly- slice of bread here, pasta there) By the end of 2 weeks I as back to higher symptoms.

    Some day we will know more thru science I am sure, but for now........for ME.........I will stay away from it and enjoy the side effects of my craziness

    There was no implication in my post that I think anyone who avoids certain foods that cause them discomfort is crazy. To me it sounds as if wheat might be an issue for you. If you feel better avoiding it, awesome.

    Would you mind telling me what 'better' means? I really am curious. :smile:

    Yes, certainly, I posted it earlier.

    Arthritis pain in hands and feet gone. Migraines with aura reduced significantly (there is a threshold factor here with many things adding to the actual onset of Migraine, so I do not say gluten caused mine, only that removing it reduced the threshold) and my IBS has gotten better.

    Mainly though the migraines and arthritis symptoms are the most significant.

    I have IBS and migraines am thinking of trying the low-FODMAP diet. Your problem might not be gluten sensitivity per se, but rather a sensitivity to fructose, fructans, galactans, polyols and or lactose. I too can eat breads up to a certain point, after which my IBS begins to kick in.

    Sorry :( I feel for you for sure.

    Interesting, I haven't followed FODMAP at this point, but I may add this to what I am now doing. I still have some IBS symptoms, maybe it is this?
  • Charlottesometimes23
    Charlottesometimes23 Posts: 687 Member
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    The fact that 2 people (8%, as I recall from the paper) did show evidence of non-placebo, gluten-specific changes,

    You would think this, unless you understand how probabilities work.

    If each participant chose their response by coin toss, there would be a 1 in 4 chance that they would respond to gluten and not placebo.

    Given 37 participants, the probability that at least two participants had a gluten-specific reaction would be > 99.5%

    I thought a coin toss would be a 50/50 chance, cuz two sides. For a 1-in-4 chance wouldn't you need a four-sided coin?

    Nope

    It was a crossover trial. Each subject had a gluten phase and a placebo phase. Say for the sake of simplicity that heads (H) represents a positive response and tails (T) represents a negative response.

    So we have four possible outcomes ( Gluten/Placebo)

    H/H
    H/T
    T/H
    T/T

    "Gluten specific" means they responded positive to gluten but not to placebo. (H/T)

    So each subject has a 1 in 4 chance of a gluten specific response.

    Now here's the fun part. To calculate the odds of at least two participants with a gluten specific reaction we treat it as a Bernoulli trial. So the probability that exactly N of them had gluten specific reactions is:

    P(n=N) = 37chooseN * (.25)^N * (.75)^(37-N)

    So P(N>=2) = 1 - P(N=0) - P(N=1)

    P(N=0) = 1*.25^0 * .75^37 = .000024
    P(N=1) = 37*.25^1 * .75^36 = .000293

    So the probability that at least two subjects had gluten specific reactions, purely by random chance is

    1-.000024-.000294 = .999682

    Stats....nice :smile:

    I know your reply wasn't to me, but I wanted to comment....

    I get your point, however you are assuming reaction that is based solely on chance, like a coin toss. Fair enough, but in real life, there may be other aspects that influence response (such as physiology/genetics/psychology etc) so one could certainly argue that all things aren't equal regarding choice of response and so probability calculation isn't so relevant.
  • FunkyTobias
    FunkyTobias Posts: 1,776 Member
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    The fact that 2 people (8%, as I recall from the paper) did show evidence of non-placebo, gluten-specific changes,

    You would think this, unless you understand how probabilities work.

    If each participant chose their response by coin toss, there would be a 1 in 4 chance that they would respond to gluten and not placebo.

    Given 37 participants, the probability that at least two participants had a gluten-specific reaction would be > 99.5%

    I thought a coin toss would be a 50/50 chance, cuz two sides. For a 1-in-4 chance wouldn't you need a four-sided coin?

    Nope

    It was a crossover trial. Each subject had a gluten phase and a placebo phase. Say for the sake of simplicity that heads (H) represents a positive response and tails (T) represents a negative response.

    So we have four possible outcomes ( Gluten/Placebo)

    H/H
    H/T
    T/H
    T/T

    "Gluten specific" means they responded positive to gluten but not to placebo. (H/T)

    So each subject has a 1 in 4 chance of a gluten specific response.

    Now here's the fun part. To calculate the odds of at least two participants with a gluten specific reaction we treat it as a Bernoulli trial. So the probability that exactly N of them had gluten specific reactions is:

    P(n=N) = 37chooseN * (.25)^N * (.75)^(37-N)

    So P(N>=2) = 1 - P(N=0) - P(N=1)

    P(N=0) = 1*.25^0 * .75^37 = .000024
    P(N=1) = 37*.25^1 * .75^36 = .000293

    So the probability that at least two subjects had gluten specific reactions, purely by random chance is

    1-.000024-.000294 = .999682

    Stats....nice :smile:

    I know your reply wasn't to me, but I wanted to comment....

    I get your point, however you are assuming reaction that is based solely on chance, like a coin toss. Fair enough, but in real life, there may be other aspects that influence response (such as physiology/genetics/psychology etc) so one could certainly argue that all things aren't equal regarding choice of response and so probability calculation isn't so relevant.


    It's extremely relevant to the original statement I was refuting
    The fact that 2 people (8%, as I recall from the paper) did show evidence of non-placebo, gluten-specific response

    That number falls well within what would be predicted by random chance, so it absolutely does not show evidence of a non-placebo effect. (especially when the two subjects in question failed to show a gluten-specific response in the second phase).
  • Maleficent0241
    Maleficent0241 Posts: 386 Member
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    If there were a wheat "allergy," then why would this allergy not be testable like other known allergens? Why wouldn't gluten get a reaction in the IgE skin test?

    There is a wheat allergy, and it IS testable by normal allergy testing means (typically using IgE blood testing, as allergists don't always have the serum in office for skin testing). Gluten sensitivity and Celiac are NOT the same thing as a wheat allergy, so testing is different (blood test, endoscopy/colonoscopy with biopsies).
  • SunofaBeach14
    SunofaBeach14 Posts: 4,932 Member
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    Speaking of gluten, I need pizza and I love it when my crust has a bit of protein. Go gluten!