What YOU should know about GLUTEN SENSITIVITY

Options
17810121328

Replies

  • arewethereyet
    arewethereyet Posts: 18,702 Member
    Options
    Yes I am a volunteer mod, but only a member just like yourself.

    I am not self diagnosed, and have not started to take medication off the black market:tongue: All I did was take all the info I had to my doctors, asked if removing this item from my diet could 'hurt' me and of course it cannot.

    My neurologist (migraines) said the studies are ongoing. He agreed with me that if the removal of gluten was the only change, it is likely it is helping with my migraine threshold

    My gastro tested me for celiac, I had an endo and colonoscopy, and blood test for allergies 1 month AFTER I stopped gluten. I refused to go back on for a month so they could draw my blood again to see if I came back positive. He agreed this change in diet 'could' be helping me, but without the blood test would not confirm. He was, however happy with the results.

    The ortho said that he is excited about the information coming around about gluten and it's effect on the body. Mainly the inflammation it can cause. He of course could not confirm removing gluten was the cause of my no longer having pain in my hands and feet, but is hopeful.

    Not one doctor of mine said "BS go eat some bread and a muffin!"

    So I hope this clears things up. I am a volunteer moderator-and I am indeed not self diagnosed, I have been to many doctors who agree with my issues and that removal of this item will in no way hurt me.
    You are, indeed, self-diagnosing when you do not allow your doctors to perform the necessary tests to confirm or deny the existence of a condition. Self-medication does not always involve "black market drugs".

    Your doctors have more patients than you to care for. You are insisting that removing gluten from your diet has improved symptoms and do not appear to have a serious medical condition. As a result, your doctors are happy to let you believe what you want as long as it gets you out of their office and allows them to treat their next patient of the day. Cutting gluten out of your diet, however unnecessary, will probably not hurt you, after all.

    As to the highlighted part of what I said : If I go back on the gluten for a month, I will be out of work due to the resulting symptoms. I do not think I should poke myself in the eye just so the doctors will have a clear diagnosis of a torn cornea.

    I DID let the doctors run every test imaginable. I was diagnosed with "Migraine, IBS, Reflux and Arthritis" I have stated this several times.

    All I did on my own, was change my diet. Period. The result was less medication, and a better quality of life.

    /shrug
  • AsaThorsWoman
    AsaThorsWoman Posts: 2,303 Member
    Options
    I haven't read the whole thread, but I might.

    I have read a couple articles on this study, and I have an opinion on it.

    It seems to me like this study doesn't really prove anything except what we already know, which is that Placebo effect is a very real thing.

    Also, the time frames on the study are skewed. Many of the issues with gluten sensitivity take more than 3 or 9 days to manifest.

    I use the analogy of a vegetarian.

    Have you every watched a vegetarian scarf down gummy bears then tell them what gelatin is made from?

    I have, and it made them sick to their stomach.

    If you tell someone they are eating something known to make them sick, they will biologically respond.

    I don't think that disproves that gluten sensitivity / allergies exist.
  • arewethereyet
    arewethereyet Posts: 18,702 Member
    Options
    I thought this was the thread where we only said nice things about gluten so as not to hurt its feelings.

    Looks like I was very *very* wrong about that.

    be sensitive to all the glutens :love:
  • arewethereyet
    arewethereyet Posts: 18,702 Member
    Options
    I must say that I have not really learned anything new in this thread, other than people on MFP can have a debate without it devolving into name calling

    cheers :drinker:
  • ILiftHeavyAcrylics
    ILiftHeavyAcrylics Posts: 27,732 Member
    Options
    I must say that I have not really learned anything new in this thread, other than people on MFP can have a debate without it devolving into name calling

    cheers :drinker:

    You take that back. :angry:



    :laugh:
  • Dragonwolf
    Dragonwolf Posts: 5,600 Member
    Options
    I'm honestly confused here, but meh.

    With regard to my allergies and asthma, I posted about it above. To give more detail, I went through three full rounds of tests from the ages of around 2 to 15. I was allergic to pretty much everything according to those tests. I took shots for a good time. Nothing worked except time. I find the modern OTC treatments help with the few symptoms I still have left and I continue to use the inhaler occasionally.

    For the record, I've said nothing about fibro in this thread. I will say that my wife was diagnosed with it. That was another fun diagnostic exercise. I still wouldn't trust a homeopath for help, anymore than I would a witch doctor.

    Hah, it seems my attempts at clarifying this morning are failing. I'll just say this and hope it's clear enough.

    I'm sorry for misunderstanding your earlier posts.

    Fibro was mentioned in the conversation by the other user a while back (something along the lines of "fibro used to be a catch-all, too"), which is why I mentioned it.

    No, I don't think we should drop science and run to homeopaths, though I do think it's good to remember that what is currently observable/provable by science is limited and doctors aren't infallible (trust but verify, basically).
  • arewethereyet
    arewethereyet Posts: 18,702 Member
    Options
    I just saw this today and thought it was interesting and relevant.

    Randomised clinical trial: gluten may cause depression in subjects with non-coeliac gluten sensitivity - an exploratory clinical study.

    http://www.ncbi.nlm.nih.gov/pubmed/24689456
    Abstract
    BACKGROUND:

    Current evidence suggests that many patients with self-reported non-coeliac gluten sensitivity (NCGS) retain gastrointestinal symptoms on a gluten-free diet (GFD) but continue to restrict gluten as they report 'feeling better'.
    AIM:

    To investigate the notion that a major effect of gluten in those with NCGS is on mental state and not necessarily on gastrointestinal symptoms.
    METHODS:

    Twenty-two subjects (24-62 years, five male) with irritable bowel syndrome who had coeliac disease excluded but were symptomatically controlled on a GFD, undertook a double-blind cross-over study. Participants randomly received one of three dietary challenges for 3 days, followed by a minimum 3-day washout before crossing over to the next diet. Challenge gluten-free food was supplemented with gluten (16 g/day), whey (16 g/day) or not supplemented (placebo). End-points included mental state as assessed by the Spielberger State Trait Personality Inventory (STPI), cortisol secretion and gastrointestinal symptoms.
    RESULTS:

    Gluten ingestion was associated with higher overall STPI state depression scores compared to placebo [M = 2.03, 95% CI (0.55-3.51), P = 0.010] but not whey [M = 1.48, 95% CI (-0.14 to 3.10), P = 0.07]. No differences were found for other STPI state indices or for any STPI trait measures. No difference in cortisol secretion was identified between challenges. Gastrointestinal symptoms were induced similarly across all dietary challenges.
    CONCLUSIONS:

    Short-term exposure to gluten specifically induced current feelings of depression with no effect on other indices or on emotional disposition. Gluten-specific induction of gastrointestinal symptoms was not identified. Such findings might explain why patients with non-coeliac gluten sensitivity feel better on a gluten-free diet despite the continuation of gastrointestinal symptoms.

    I feel badly for the poor people who feel a bit low when eating gluten, but that's certainly not what happens when I eat it.

    It is a good read, and I have never been depressed, but I too have a much greater response to wheat/gluten what ever you call it. I respond very badly
  • FunkyTobias
    FunkyTobias Posts: 1,776 Member
    Options
    It doesn't exist.

    This has been proven by the researchers who originally provided evidence of its existence. Their followup research shows that there is no such thing.

    http://www.businessinsider.com/gluten-sensitivity-and-study-replication-2014-5
    Statistics fail. Any study involving 37 people might show it's highly likely to be falsely diagnosed but doesn't prove that it doesn't exist at all.

    Do you even math?

    Do you?

    Statistical Analyses
    Power calculations were based on previous data
    6
    and
    allowed for dropout, missing data, and error rate, and assumed a
    measure of variance from that score (0.29). This indicated that 37
    patients were required to achieve a power of 80%, at a 2-sided 5%
    significance level (if the true difference is 0.2).
    Per-protocol analyses were performed. Comparisons of
    symptom severity scores and measured parameters across treatment periods were assessed by repeated measures analysis of
    variance or Friedman test, as appropriate. Pairedttests were used
    to compare the normally distributed data and Wilcoxon signed
    rank test to compare the nonparametric data. Spearman’s correlations were used for associations between symptom severity
    and biomarkers. The reproducibility was assessed by the testretest reliability by calculating the correlation between
    measured symptoms using the Pearson’s correlation coefficient.
    High test-retest correlations indicate a more reliable sale. TwotailedPvalues.05 were considered statistically significant.
  • EllieB_5
    EllieB_5 Posts: 247 Member
    Options
    "BACKGROUND & AIMS:

    Patients with non-celiac gluten sensitivity (NCGS) do not have celiac disease but their symptoms improve when they are placed on gluten-free diets. We investigated the specific effects of gluten after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates (fermentable, oligo-, di-, monosaccharides, and polyols [FODMAPs]) in subjects believed to have NCGS."

    My understanding of this is to test the effects of a low FODMAP diet in subjects believed to be NCGS (non-celiac gluten sensitive). To me, this says nothing of dispelling the idea of NCGS's existence.
    ...we found no evidence of specific or dose-dependent effects of gluten in patients with NCGS placed diets low in FODMAPs.
    I read this as saying that there is no evidence of gluten effects in patients put on a low FODMAP diet.
    In all participants, gastrointestinal symptoms consistently and significantly improved during reduced FODMAP intake, but significantly worsened to a similar degree when their diets included gluten or whey protein.
    Gluten-specific gastrointestinal effects were not reproduced.

    This is confusing to me. On one hand they say gluten increased symptoms, on the other they say they couldn't reproduce effects?
    Coincidentally, some of the largest dietary sources of FODMAPs -- specifically bread products -- are removed when adopting a gluten-free diet, which could explain why the millions of people worldwide who swear by gluten-free diets feel better after going gluten-free.

    This makes perfect sense to me. Having confirmed IBS, and a low FODMAP diet allegedly reducing IBS symptoms, it makes complete sense that removing gluten and starches from my diet improves my symptoms drastically without having either NCGS nor a wheat allergy.


    I'll remain on the fence about this one until more double-blind studies come out; about either NCGS or FODMAPs.

    So, in other words, the media is misrepresenting the actual study findings.... yet again.

    Go figure...

    Science works. Unfortunately, so do yellow journalism and politics.

    They are?
  • FunkyTobias
    FunkyTobias Posts: 1,776 Member
    Options


    Also, the time frames on the study are skewed. Many of the issues with gluten sensitivity take more than 3 or 9 days to manifest.


    Not at all relevant to this study. If the results were "we found no emergence of symptoms", then it would be.

    This was not the case. ALL of the subjects reported symptoms, even those who consumed no gluten. In fact, the study was originally supposed to last much longer, but the intervention was shortened out of consideration for the subjects.

    Fourthly, the duration of treatment was reduced from 6
    weeks to 1 week on the basis that symptoms were uniformly induced within thefirst week of the original study.
    It is unlikely that a longer time frame of challenge would
    capture any delayed responses to gluten, as the 3 gluten
    responders in the current study reached their highest
    symptom level at day 3. This also formed the rationale for
    the 3-day rechallenge study duration.
  • EllieB_5
    EllieB_5 Posts: 247 Member
    Options
    Selective science and hypochondria are fun combos...

    "Science is wrong because <insert anecdotal observation>

    Out of curiosity, would you suggest that this hypochondriac just go on eating the gluten and suffer the symptoms, because 'science' has not proven that my symptoms were indeed caused by the gluten?

    I have never had a doctor have anything but a very positive reaction to my change in health.

    That's not the same as a diagnosis. If I were you I'd keep trying to determine what the issue is. The studies above show no evidence of gluten sensitivity, which is definitely not the same as proving it doesn't exist, but it should at least make you question what is really going on.

    Edit: typo . . . #problemswithsmartphones

    OK, so are you saying I should go ahead and eat the gluten and wait for someone to give me a 'gluten whatever' diagnosis.

    I do have diagnosis: Migraine, complicated by aura and visual disturbances, IBS, Reflux (hiatal hernia) and arthritis. All diagnosed with blood tests, xrays, CT scans, MRI, MRA and scopes.

    I suppose my biggest issue on the thread is what does it matter if I do not eat gluten. What am I missing other than filler?

    I am a bit confused really by some of the responses :ohwell:

    What I don't understand is, if you have diagnosed IBS and migraines and reflux issues why are you not at least entertaining the idea of FODMAPs? Especially having IBS! A two second search on FODMAPs brought up a list of IBS sites and how removal of FODMAPs can reduce IBS symptoms. Instead you're just bucking against the idea that it isn't 100% a gluten issue instead of possibly a FODMAP issue. FODMAPs make sense for IBS, and apparently that isn't a new idea. I don't know about your IBS, but mine likes to mimic Celiac. I looked at the IBS FODMAP diet and essentially everything wheat is suppose to be removed... as in, gluten. The more I look into IBS, FODMAPs, abdominal migraines, and reflux, the more inclined I am to believe I have an issue with FODMAPs, maybe gluten but then again no one can prove gluten is a factor in my health - my doctors merely agree with the whole NCGS thing. I don't know about your doctors, but mine are not gods. Mine follow whatever science is telling them, and they can be wrong.

    Edits:
    I was once diagnosed with IBS. This was 20 years ago, before the whole gluten fad. I had terrible digestive issues, painful bloating after every meal to the point that I would sometimes have to leave work early and go home to lie down. This went on for years.

    It went away. I never took medication for it, I never eliminated anything from my diet, but eventually it just went away all by itself.

    Not a statistically significant story, but neither are the other anecdotes offered by other members.

    I'm actually wonder how much of these "sensitivities" and digestive dysfunctions are caused by disruption in the intestinal flora. We already know that poop transplants help people with Chrohn's disease because it restores the flora. Have any of you with these sensitivies and conditions been on antibiotics before? (Probably a silly question, these days everyone has been on antibiotics numerous times). Do you take a probiotic?

    I was on massive antibiotics after contracting necrotizing fasciitis. I didn't just take probiotics, but made sure to also take prebiotics to make sure the probiotics would have a fighting chance. Did that for about a year with zero results. IBS has shown links to serotonin disturbances, of which I've been diagnosed for about forever now. IBS, like fibro, like myofascial pain syndrome... like any syndrome it is not yet understood.

    I've also had digestive issues since childhood, so, at least 34 years now.
  • Runfaster14
    Runfaster14 Posts: 90 Member
    Options
    OP: You have your diary open and I refuse to take any type of advice from someone who is not doing the right things to begin with. Please, if you post at least have some experience and be more of an expert in this area.

    I have plenty of experience eating gluten. Is that what you mean?
    :laugh: :tongue: :laugh: :tongue: :laugh: :tongue: :laugh: :tongue:
  • NoleGirl0918
    NoleGirl0918 Posts: 213 Member
    Options
    Bump for later reading.
  • Dragonwolf
    Dragonwolf Posts: 5,600 Member
    Options
    So, in other words, the media is misrepresenting the actual study findings.... yet again.

    Go figure...

    Science works. Unfortunately, so do yellow journalism and politics.

    They are?

    What the media is saying:
    Researchers Who Provided Key Evidence For Gluten Sensitivity Have Now Thoroughly Shown That It Doesn't Exist

    What the study actually concludes:
    In a placebo-controlled, cross-over rechallenge study, we found no evidence of specific or dose-dependent effects of gluten in patients with NCGS placed diets low in FODMAPs.

    Saying that a handful of people placed on a low-FODMAP diet don't show responses in observed markers to changes in gluten does not, by any stretch of the imagination, equate to "thoroughly showing gluten sensitivity doesn't exist."

    It does show that more research is needed in both the effects of FODMAPs in conditions that have anecdotal improvements from going gluten-free, and the effects of changes in gluten in diets that aren't low in FODMAPs.

    It also shows that the better way to actually confirm/deny the existence of gluten sensitivity is to not tell the subjects they're eating gluten, but rather that they're not eating it, even if they are (after all "blind" -- double or not -- can go both ways, especially in situations like this). Congrats, the scientists have also proven that the placebo effect works both ways.
  • EllieB_5
    EllieB_5 Posts: 247 Member
    Options

    Saying that a handful of people placed on a low-FODMAP diet don't show responses in observed markers to changes in gluten does not, by any stretch of the imagination, equate to "thoroughly showing gluten sensitivity doesn't exist."

    It does show that more research is needed in both the effects of FODMAPs in conditions that have anecdotal improvements from going gluten-free, and the effects of changes in gluten in diets that aren't low in FODMAPs.

    It also shows that the better way to actually confirm/deny the existence of gluten sensitivity is to not tell the subjects they're eating gluten, but rather that they're not eating it, even if they are (after all "blind" -- double or not -- can go both ways, especially in situations like this). Congrats, the scientists have also proven that the placebo effect works both ways.

    Ah, I understand now. I also agree.

    I am also still on the fence. While I am looking into this FODMAP thing for my IBS and migraines, I am also not ruling out gluten until it is definitively proven that NCGS does not exist. Unlike most other NCGS patients, I can at least have an open mind to science :frown:

    Edit: n0t pointing at anyone specific... no need for hate :tongue:
  • ILiftHeavyAcrylics
    ILiftHeavyAcrylics Posts: 27,732 Member
    Options

    Saying that a handful of people placed on a low-FODMAP diet don't show responses in observed markers to changes in gluten does not, by any stretch of the imagination, equate to "thoroughly showing gluten sensitivity doesn't exist."

    It does show that more research is needed in both the effects of FODMAPs in conditions that have anecdotal improvements from going gluten-free, and the effects of changes in gluten in diets that aren't low in FODMAPs.

    It also shows that the better way to actually confirm/deny the existence of gluten sensitivity is to not tell the subjects they're eating gluten, but rather that they're not eating it, even if they are (after all "blind" -- double or not -- can go both ways, especially in situations like this). Congrats, the scientists have also proven that the placebo effect works both ways.

    Ah, I understand now. I also agree.

    I am also still on the fence. While I am looking into this FODMAP thing for my IBS and migraines, I am also not ruling out gluten until it is definitively proven that NCGS does not exist. Unlike most other NCGS patients, I can at least have an open mind to science :frown:

    Edit: n0t pointing at anyone specific... no need for hate :tongue:

    Personally if I were in your shoes that would be my position as well.

    It's hard to see past our anecdotal experience, especially since the human brain wants to connect things as cause/effect, even when they're unrelated. It's a complex web of variables and even if you're using 100% research-based treatments it can be difficult to pin down which things are helping/hurting and which are just coincidence.

    Fibro was mentioned earlier. With fibro, and all other chronic health issues with which I have experience, it comes and goes completely on its own. I can be in severe pain for weeks and then one day I'll wake up and it's better. It's nothing I did or didn't do, it's just the cyclical nature of the beast. Once I was completely convinced that a medication I was taking was crucial for just that reason. I'm ashamed to admit I threw quite a fit when a new doctor I was seeing told me that the dosage I was taking was basically homeopathic. But it turned out he was right. It was just a coincidence that when I started taking that med my symptoms dramatically improved. I'd even tested it by going off of it and my symptoms seemed to return. If you get a combination of coincidence and placebo effect it's very easy to end up believing something is helping that just isn't.

    Anyway I've gotten a bit off track. My point was just that our brains naturally respond to anecdotal evidence over science. It can be tough to remain skeptical and emotionally detached enough to figure out what's really going on.
  • ValGogo
    ValGogo Posts: 2,168 Member
    Options
    OH MY GOOOOOD YOU GUYS......

    I just saw an entry for "Gluten Free Ring Dings."

    There is no stopping this juggernaut.

    It's like Whole Grain Lucky Charms.
  • tennisdude2004
    tennisdude2004 Posts: 5,609 Member
    Options
    I haven't read the whole thread, but I might.

    I have read a couple articles on this study, and I have an opinion on it.

    It seems to me like this study doesn't really prove anything except what we already know, which is that Placebo effect is a very real thing.

    Also, the time frames on the study are skewed. Many of the issues with gluten sensitivity take more than 3 or 9 days to manifest.

    I use the analogy of a vegetarian.

    Have you every watched a vegetarian scarf down gummy bears then tell them what gelatin is made from?

    I have, and it made them sick to their stomach.

    If you tell someone they are eating something known to make them sick, they will biologically respond.

    I don't think that disproves that gluten sensitivity / allergies exist.

    +1
  • FunkyTobias
    FunkyTobias Posts: 1,776 Member
    Options

    Saying that a handful of people placed on a low-FODMAP diet don't show responses in observed markers to changes in gluten does not, by any stretch of the imagination, equate to "thoroughly showing gluten sensitivity doesn't exist."


    If you are going to criticize the study, you might try actually reading it.

    The subject did show responses, all of them, whether or not they consumed gluten. In the first phase, there were only two subjects that showed a gluten-specific response (ie responded to gluten but not placebo).

    The same was true for the second phase.

    These were not the same two subjects.
  • ValGogo
    ValGogo Posts: 2,168 Member
    Options
    Soo what i took from the original article is that they are arguing the accuracy of self diagnosis as the problem, not a whole lot of concrete evidence to support whether the sensitivity itself exists or not. Just a bunch of manipulation of words by mainstream media. 147 completed the survey. 62% actually had celiac disease and the majority of the rest just seemed like a process of elimination because they didn't meet the proper criteria to be apart of the experiment.

    Not to mention an experiment done on 147 people (130 of which are female) and all from Melbourne, Australia.... IMO the trial size is too small, lacks randomization and the majority of the subjects are considered not fit for the study, so it's not 100% valid in my books. I do agree that some self diagnosed gluten sensitivities may actually be caused by allergies or diseases other than gluten, but i don't know if i can agree that the sensitivities don't exist at all. Considering the symptoms i experience, I'm definitely not touching it. Of course because science can't test for it yet it'll probably go back and forth for a while until it can be proved either way. Sort of like she "proved" it one way for so many years and now is trying to take it back.

    The body is amazing thing! Far beyond our understanding in many ways that's for sure. Has anyone found any additional peer reviewed articles on this topic ooor?

    http://www.ncbi.nlm.nih.gov/pubmed/23648697


    This one still has a very small sample size (37) but it seems well controlled, at least to my admittedly untrained eye.

    The problem with the study is it's still self identified (we all know how many hypochondriacs there are out there). I would love to see this study done on people whose medical conditions can be linked to a gluten sensitivity. I know for my wife's condition (postural orthostatic tachycardia syndrome), she has to eat low carb and gluten free. Discussions between a GI, Endo, Cardiologist, Electrophysiologist and POTS specialist all suggested the same diet. While the below is not a study, but the below link is informative in terms of diet for my wife's condition.


    http://www.dysautonomiainternational.org/page.php?ID=44

    I agree it seems to be more of an indictment of self-diagnosis than anything, although the results re: gluten vs. FODMAPS are interesting.

    Personally I continue to be torn on most issues of this kind. I put my faith in science. However I also know what it's like to feel like science hasn't yet arrived at a satisfactory conclusion for a medical issue (I have been diagnosed with fibromyalgia and lupus, but neither diagnosis completely fits). I try not to fall into the mindset of "science must be wrong because of (insert anecdotal evidence here)" but I'm also not ready to write off the issues of a lot of people with genuine symptoms just yet.

    Fibromyalgia is of great interest to me. It used to be a diagnosis when no other diagnosis fit, like IBS.

    If you as the patient try different things to reduce your pain (from what I hear it is horrible :frown: ) and it works, but no doctor has told you that it will help.......or no scientific studies exist to say so, do you just pop the Lyrica? (not you per se)

    It just seems very odd to me that so many people who do not suffer from my issues, can so blatantly insinuate I am a hypochondriac.

    It was only 10 years go that Fibromyalgia was thought of the same. Now we have more information, and KNOW it exists!

    BTW, you are one of my heroes :drinker:

    (slaps hand to forehead) God DA&N I knew fibromyalgia would get into the converation. I hate being psychic.