7 ms·

Small Amounts of Gluten in Subjects with Suspected Nonceliac Gluten Sensitivity

52 points by alexcasalboni 12y ago

hoopism 12y ago
We have put my daughter on a gluten free diet for reasons that aren't relevant to this article... the byproduct has resulted in a decrease in gluten in my own diet (pretty much extinction). I have always had intestinal issues and a while back was able to alleviate them considerably with the decrease in dairy. I wouldn't say that I noticed a lessening of symptoms when we switched to gluten free diet BUT I did recently buy a bread machine and started making gluten based bread regularly (and eating a lot of it). Symptom wise I have felt much worse than ever before... no idea if there's a link... but it was interesting to note (had to rack my brain to figure out why I felt so bloated and crummy). Only real change was the consumption of more bread than usual.
- daughart 12y ago
  There was a study a while back that suggested FODMAPs, not gluten, was a prime candidate for this type of symptom. "Fodmaps is an acronym for fermentable oligosaccharides, disaccharides, monosaccharides and polyols, sugars that draw water into the intestinal tract. They may be poorly digested or absorbed, and become fodder for colonic bacteria that produce gas and can cause abdominal distress." http://www.gastrojournal.org/article/S0016-5085%2813%2900702-6/abstract http://www.gastrojournal.org/article/S0016-5085%2813%2900702...
  - dmix 12y ago
    Yup I have ulcerative colitis and one doctor put me on FODMAP, my awful symptoms were minimized much the same was as taking almost chemo-level pharmaceuticals I was put on at an earlier time (which also was effective). That time around I wanted to try a diet approach and it seemed to work. And traditionally there have been no diet based remedies for colitis, whereas with Crohn's and celiac diet matters a lot so that says something for FODMAP ancedotally. The only problem is the it is really hard to find FODMAP food in grocery stores. You end up eating a very small group of the same meals and are forced to not eat out at many restaurants. So much like weight-loss/working out you'll be receding back to eating regular food within a few months unless you're dedicated. I hope the 'food industry' starts offering more food in the FODMAP genre, instead of the obsessive and over-priced gluten-free products that are popping up - and largely not science based the way FODMAP has been.
Yen 12y ago
This is interesting, as before now, I considered most claims of gluten sensitivity (that weren't specifically related to Celiac disease) to be part of a health fad. This study would seem to contradict that. Are these P numbers actually a large effect, though? This doesn't seem to have freely available full text.
- sp332 12y ago
  The p-value is the probability that you would observe an effect of this size if the hypothesis were not correct. So you want them to be small. In most fields, you want to get at least p < 0.05 or 95% certainty, which is about two standard deviations from the mean in a normal distribution. That means that your result is far enough away from what you would get by random chance. https://en.wikipedia.org/wiki/Standard_deviation#mediaviewer/File:Standard_deviation_diagram.svg https://en.wikipedia.org/wiki/Standard_deviation#mediaviewer...
  - Yen 12y ago
    Ok, so their observed effect ("significantly increased overall symptoms") is almost certainly due to gluten. Those are indeed good probabilities. I'm interested in how large an effect "significantly increased" means. I suspect that this is defined a little more rigorously in the actual text, but it doesn't seem to be in the abstract.
    - pseudonom- 12y ago
      > almost certainly due to gluten Even if you ignore all the messiness of actually existing scientific practice, the math alone doesn't quite say that. It depends on your prior[0] and the power[1] of the study. [0]: https://en.wikipedia.org/wiki/Bayes'_theorem https://en.wikipedia.org/wiki/Bayes'_theorem [1]: https://en.wikipedia.org/wiki/Statistical_power https://en.wikipedia.org/wiki/Statistical_power
  - TeMPOraL 12y ago
    Keep in mind that p < 0.05 is actually quite a weak standard, and hard sciences tend to aim for a stronger p < 0.01. The problem with p < 0.05 and p-numbers in general is that current scientific practice allows to get whatever results you want with p < 0.05 by doing various tricks with statistics. Unfortunately this practice of "p-number hacking" is being fought nowhere near as it should be.
ChuckMcM 12y ago
I sooooo wish someone would do this study and include in it a survey of gut flora through out the tests.
newobj 12y ago
(TMI warning) I'm not celiac, but if I eat gluten my stool gets screwed up and I have to wipe like (seriously) 10 times to get "clean enough". That's the most obvious effect. Foggy, bloating, yes, to a lesser degree. But the screwed up stool is like a night and day thing. No gluten, clean shot. Gluten, mud butt. I did register as highly sensitive to gluten (and dairy and soy) on an IgG test. That's not celiac though. Also, as these things seem to be correlated, I am homozygous for MTHFR 677T mutation.
- petercooper 12y ago
  I don't think I was as bad as that, but I had a similar issue. I tested negative for celiac twice, although my father is confirmed, but I have to roll my eyes at anyone who claims non-celiac gluten sensitivity doesn't exist because it clearly does for some of us (that said, I have never suffered from bloating or pain which are allegedly the most common symptoms).
- themagician 12y ago
  The response your body has to gluten, like many things, is going to be highly dependent on a combination of your gut flora and genetics. And while your genetics won't change over time, your gut flora will. There is this strange myth that exists in nutrition that food is somehow "designed" for the human body and that there are absolute answers as to what is good for you and what is bad for you. The gluten-free movement of sorts is just another step in a long running misunderstanding of how food is processed by the human body. The result of which is always, "<food> is not good for you, this study proves it!" The reality is much more personal. It's possible that the rise in gluten sensitivity has more to do with changing gut flora than anything else. That may be a result of long term gluten consumption, too much gluten consumption or something else completely unrelated.
- bhayden 12y ago
  Maybe look into taking psyllium husk for those awesome no-wipe poos.
fasteo 12y ago
Sorry, maybe OT: Does anybody here has empirical experience with ADHD and the supposed connection with gluten sensitivity [1] ? I have a kid with severe ADHD and I have been always reluctant to try a gluten-free diet, but the truth is that the evidence is getting stronger everyday. Thanks. [1] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3184556/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3184556/
- newobj 12y ago
  email me (in my profile)
  - fasteo 12y ago
    thanks. check your inbox.
- joshrotenberg 12y ago
  I also have a kid with attention issues. We recently did some testing for Celiac which was negative, but he clearly feels better, both in terms of focus and gastrointestinal issues, when he lays off the gluten/wheat. Try it out, worth a shot. Also, it definitely makes it easier when you give it up as a family and, in my experience, pretty much all of the gluten free bread products taste like crap, so find ways to avoid things with bread in general.
  - newobj 12y ago
    Has your child had any genetic testing? Any mutations in A1298C or C677T?
    - fasteo 12y ago
      Nope. Worth doing ? Incidentally, I did the 23andme test and I have just checked mine[1]: A1298C: no SNP of MTHFR C677T: heterozygous for MTHFR [1] http://blog.stickyrice.net/archives/2013/decode-23andme-for-mthfr-genes/ http://blog.stickyrice.net/archives/2013/decode-23andme-for-...
raverbashing 12y ago
" Participants were randomly assigned to groups given either 4.375 g/day gluten or rice starch (placebo) for 1 week, each via gastro-soluble capsules."" One thing that's not clear is what was communicated to the patients: "You'll be given gluten", "You'll be given something unspecified" or "You'll be given a gluten-free food" (and then groups split in gluten/placebo given)
- zemo 12y ago
  subjects don't know whether they do or do not have placebo. That's inherent in the definition of placebo.
  - hatsix 12y ago
    Please re-read the parent comment. The question is "What did they think they have?"
- jimjimjim 12y ago
  "... a Randomized, Double-Blind, Placebo-Controlled, ..." The important part of the title is the words Double-Blind. The patients don't know and the people running it don't know.
  - bcherry 12y ago
    The patients know they're eating a pill - the administrators have to tell them something about this pill, even in a double blind study. Did they tell them "this pill contains gluten" (even though the placebo group did not receive gluten) or did they tell them "this pill contains no gluten" or did they tell them "this pill may or may not contain gluten"? Maybe they told them "this pill contains an experimental drug for combatting gluten intolerance". it does matter what they used.
    - inyourtenement 12y ago
      I have some small experience as a study subject. We were given detailed information ahead of time which included what was under study, and whether there would be a placebo group. I guess the assumption is that since both groups receive the same information any placebo effect would be equalized.
brandonmenc 12y ago
Here's an anecdote: My mother is so allergic to wheat (not sure if it's the gluten or not) that when she touches dough, she instantly breaks out in hives at the site of contact. It's interesting, because ingestion isn't required to produce a reaction. She can't eat the stuff, either. She's even more allergic to corn. The only grain she can contact without consequence is rice. She eliminated grains from her diet and, after many years, can now eat small amounts without much of a problem. Can anyone else here attest to this kind of general grain allergy?
- newobj 12y ago
  There are two kinds of "allergies", IgE and IgG. IgE is more "anaphylactic", and IgG can be referred to as a "delayed allergy." When talking about gut sensitivity I think people are usually referring to the IgG sensitivity.
- jobu 12y ago
  It's definitely a thing. I know one person that is seriously allergic to corn. She carries several EpiPens because corn is in almost everything and the reaction is pretty severe. She can't even consume meat from animals that were fed corn. Thankfully grass-fed beef is becoming more common, but chicken and pork are generally off limits.
wbhart 12y ago
I too thought gluten intolerance was all in people's minds, except for Celiac (which is a very serious affair indeed). I had pretty bad intestinal problems for a couple of years. I had effectively ruled out gluten as a possible cause because in uni I had pizza boxes stacked to the roof. Whilst reading a paper on a dietary study I remembered that croissants triggered severe intestinal issues for me. I began to wonder whether I had developed a sensitivity to gluten. I cut gluten and my pretty bad intestinal issues ceased within days, with a total abatement after 2 weeks. That's been the case for 2 months now. I also suffer from occasional (controlled) panic attacks. There has been at least a 50-75% reduction in those. (I was aware my panic attacks were exacerbated by the intestinal issues.) Another interesting discovery in an article I read on HN is that metabolism is more affected by eating than light. So I tried not eating any calories after 10pm. My normal waking hour is 11 am and has been for 15 years. By the first weekend after I started nil calories after 10 pm, I woke up at 7:30 am! (It's stablised to a more civilised hour now.)
- aaronbrethorst 12y ago
  I never had any gluten sensitivity issues until I was in my mid 20s. After a few years of really terrible symptoms a friend suggested I cut gluten out of my diet and my symptoms disappeared completely within two days.
  - wbhart 12y ago
    In my case, I can't have had any severe gluten issues (at least not intestinal ones) until age 37. Another really strange effect is that since stopping with gluten I have had very vivid childhood memories. I don't believe I had "brain fog", but something interesting happened.
  - MollyR 12y ago
    Yea I had this experience as well. I also lost the ability to digest lactose, and got milk allergy/sensitivity(a little bit of both) issues as I got older. I wonder if as we age, certain groups of people experience a failure of digestive enzymes across a variety of biological compounds.
- 12y ago
maxerickson 12y ago
I always wonder how many people who feel better after giving up bread are dealing with some level of insulin resistance.
spdustin 12y ago
Is there a source for the full text that doesn't involve subscribing? I seem to recall some comments in the past that there are sites that offer the full text of such studies.
serve_yay 12y ago
I don't know why it's so hard to just believe people if they don't want gluten or say it makes them feel bad. It could be a placebo, but how many things you care about are just in your head?

52 points by alexcasalboni 12y ago

We have put my daughter on a gluten free diet for reasons that aren't relevant to this article... the byproduct has resulted in a decrease in gluten in my own diet (pretty much extinction). I have always had intestinal issues and a while back was able to alleviate them considerably with the decrease in dairy. I wouldn't say that I noticed a lessening of symptoms when we switched to gluten free diet BUT I did recently buy a bread machine and started making gluten based bread regularly (and eating a lot of it). Symptom wise I have felt much worse than ever before... no idea if there's a link... but it was interesting to note (had to rack my brain to figure out why I felt so bloated and crummy). Only real change was the consumption of more bread than usual.

daughart 12y ago
There was a study a while back that suggested FODMAPs, not gluten, was a prime candidate for this type of symptom. "Fodmaps is an acronym for fermentable oligosaccharides, disaccharides, monosaccharides and polyols, sugars that draw water into the intestinal tract. They may be poorly digested or absorbed, and become fodder for colonic bacteria that produce gas and can cause abdominal distress." http://www.gastrojournal.org/article/S0016-5085%2813%2900702-6/abstract http://www.gastrojournal.org/article/S0016-5085%2813%2900702...
- dmix 12y ago
  Yup I have ulcerative colitis and one doctor put me on FODMAP, my awful symptoms were minimized much the same was as taking almost chemo-level pharmaceuticals I was put on at an earlier time (which also was effective). That time around I wanted to try a diet approach and it seemed to work. And traditionally there have been no diet based remedies for colitis, whereas with Crohn's and celiac diet matters a lot so that says something for FODMAP ancedotally. The only problem is the it is really hard to find FODMAP food in grocery stores. You end up eating a very small group of the same meals and are forced to not eat out at many restaurants. So much like weight-loss/working out you'll be receding back to eating regular food within a few months unless you're dedicated. I hope the 'food industry' starts offering more food in the FODMAP genre, instead of the obsessive and over-priced gluten-free products that are popping up - and largely not science based the way FODMAP has been.

Yen 12y ago

This is interesting, as before now, I considered most claims of gluten sensitivity (that weren't specifically related to Celiac disease) to be part of a health fad. This study would seem to contradict that. Are these P numbers actually a large effect, though? This doesn't seem to have freely available full text.

sp332 12y ago
The p-value is the probability that you would observe an effect of this size if the hypothesis were not correct. So you want them to be small. In most fields, you want to get at least p < 0.05 or 95% certainty, which is about two standard deviations from the mean in a normal distribution. That means that your result is far enough away from what you would get by random chance. https://en.wikipedia.org/wiki/Standard_deviation#mediaviewer/File:Standard_deviation_diagram.svg https://en.wikipedia.org/wiki/Standard_deviation#mediaviewer...
- Yen 12y ago
  Ok, so their observed effect ("significantly increased overall symptoms") is almost certainly due to gluten. Those are indeed good probabilities. I'm interested in how large an effect "significantly increased" means. I suspect that this is defined a little more rigorously in the actual text, but it doesn't seem to be in the abstract.
  - pseudonom- 12y ago
    > almost certainly due to gluten Even if you ignore all the messiness of actually existing scientific practice, the math alone doesn't quite say that. It depends on your prior[0] and the power[1] of the study. [0]: https://en.wikipedia.org/wiki/Bayes'_theorem https://en.wikipedia.org/wiki/Bayes'_theorem [1]: https://en.wikipedia.org/wiki/Statistical_power https://en.wikipedia.org/wiki/Statistical_power
- TeMPOraL 12y ago
  Keep in mind that p < 0.05 is actually quite a weak standard, and hard sciences tend to aim for a stronger p < 0.01. The problem with p < 0.05 and p-numbers in general is that current scientific practice allows to get whatever results you want with p < 0.05 by doing various tricks with statistics. Unfortunately this practice of "p-number hacking" is being fought nowhere near as it should be.

ChuckMcM 12y ago

I sooooo wish someone would do this study and include in it a survey of gut flora through out the tests.

newobj 12y ago

(TMI warning) I'm not celiac, but if I eat gluten my stool gets screwed up and I have to wipe like (seriously) 10 times to get "clean enough". That's the most obvious effect. Foggy, bloating, yes, to a lesser degree. But the screwed up stool is like a night and day thing. No gluten, clean shot. Gluten, mud butt. I did register as highly sensitive to gluten (and dairy and soy) on an IgG test. That's not celiac though. Also, as these things seem to be correlated, I am homozygous for MTHFR 677T mutation.

petercooper 12y ago
I don't think I was as bad as that, but I had a similar issue. I tested negative for celiac twice, although my father is confirmed, but I have to roll my eyes at anyone who claims non-celiac gluten sensitivity doesn't exist because it clearly does for some of us (that said, I have never suffered from bloating or pain which are allegedly the most common symptoms).
themagician 12y ago
The response your body has to gluten, like many things, is going to be highly dependent on a combination of your gut flora and genetics. And while your genetics won't change over time, your gut flora will. There is this strange myth that exists in nutrition that food is somehow "designed" for the human body and that there are absolute answers as to what is good for you and what is bad for you. The gluten-free movement of sorts is just another step in a long running misunderstanding of how food is processed by the human body. The result of which is always, "<food> is not good for you, this study proves it!" The reality is much more personal. It's possible that the rise in gluten sensitivity has more to do with changing gut flora than anything else. That may be a result of long term gluten consumption, too much gluten consumption or something else completely unrelated.
bhayden 12y ago
Maybe look into taking psyllium husk for those awesome no-wipe poos.

fasteo 12y ago

Sorry, maybe OT: Does anybody here has empirical experience with ADHD and the supposed connection with gluten sensitivity [1] ? I have a kid with severe ADHD and I have been always reluctant to try a gluten-free diet, but the truth is that the evidence is getting stronger everyday. Thanks. [1] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3184556/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3184556/

newobj 12y ago
email me (in my profile)
- fasteo 12y ago
  thanks. check your inbox.
joshrotenberg 12y ago
I also have a kid with attention issues. We recently did some testing for Celiac which was negative, but he clearly feels better, both in terms of focus and gastrointestinal issues, when he lays off the gluten/wheat. Try it out, worth a shot. Also, it definitely makes it easier when you give it up as a family and, in my experience, pretty much all of the gluten free bread products taste like crap, so find ways to avoid things with bread in general.
- newobj 12y ago
  Has your child had any genetic testing? Any mutations in A1298C or C677T?
  - fasteo 12y ago
    Nope. Worth doing ? Incidentally, I did the 23andme test and I have just checked mine[1]: A1298C: no SNP of MTHFR C677T: heterozygous for MTHFR [1] http://blog.stickyrice.net/archives/2013/decode-23andme-for-mthfr-genes/ http://blog.stickyrice.net/archives/2013/decode-23andme-for-...

raverbashing 12y ago

" Participants were randomly assigned to groups given either 4.375 g/day gluten or rice starch (placebo) for 1 week, each via gastro-soluble capsules."" One thing that's not clear is what was communicated to the patients: "You'll be given gluten", "You'll be given something unspecified" or "You'll be given a gluten-free food" (and then groups split in gluten/placebo given)

zemo 12y ago
subjects don't know whether they do or do not have placebo. That's inherent in the definition of placebo.
- hatsix 12y ago
  Please re-read the parent comment. The question is "What did they think they have?"
jimjimjim 12y ago
"... a Randomized, Double-Blind, Placebo-Controlled, ..." The important part of the title is the words Double-Blind. The patients don't know and the people running it don't know.
- bcherry 12y ago
  The patients know they're eating a pill - the administrators have to tell them something about this pill, even in a double blind study. Did they tell them "this pill contains gluten" (even though the placebo group did not receive gluten) or did they tell them "this pill contains no gluten" or did they tell them "this pill may or may not contain gluten"? Maybe they told them "this pill contains an experimental drug for combatting gluten intolerance". it does matter what they used.
  - inyourtenement 12y ago
    I have some small experience as a study subject. We were given detailed information ahead of time which included what was under study, and whether there would be a placebo group. I guess the assumption is that since both groups receive the same information any placebo effect would be equalized.

brandonmenc 12y ago

Here's an anecdote: My mother is so allergic to wheat (not sure if it's the gluten or not) that when she touches dough, she instantly breaks out in hives at the site of contact. It's interesting, because ingestion isn't required to produce a reaction. She can't eat the stuff, either. She's even more allergic to corn. The only grain she can contact without consequence is rice. She eliminated grains from her diet and, after many years, can now eat small amounts without much of a problem. Can anyone else here attest to this kind of general grain allergy?

newobj 12y ago
There are two kinds of "allergies", IgE and IgG. IgE is more "anaphylactic", and IgG can be referred to as a "delayed allergy." When talking about gut sensitivity I think people are usually referring to the IgG sensitivity.
jobu 12y ago
It's definitely a thing. I know one person that is seriously allergic to corn. She carries several EpiPens because corn is in almost everything and the reaction is pretty severe. She can't even consume meat from animals that were fed corn. Thankfully grass-fed beef is becoming more common, but chicken and pork are generally off limits.

wbhart 12y ago

I too thought gluten intolerance was all in people's minds, except for Celiac (which is a very serious affair indeed). I had pretty bad intestinal problems for a couple of years. I had effectively ruled out gluten as a possible cause because in uni I had pizza boxes stacked to the roof. Whilst reading a paper on a dietary study I remembered that croissants triggered severe intestinal issues for me. I began to wonder whether I had developed a sensitivity to gluten. I cut gluten and my pretty bad intestinal issues ceased within days, with a total abatement after 2 weeks. That's been the case for 2 months now. I also suffer from occasional (controlled) panic attacks. There has been at least a 50-75% reduction in those. (I was aware my panic attacks were exacerbated by the intestinal issues.) Another interesting discovery in an article I read on HN is that metabolism is more affected by eating than light. So I tried not eating any calories after 10pm. My normal waking hour is 11 am and has been for 15 years. By the first weekend after I started nil calories after 10 pm, I woke up at 7:30 am! (It's stablised to a more civilised hour now.)

aaronbrethorst 12y ago
I never had any gluten sensitivity issues until I was in my mid 20s. After a few years of really terrible symptoms a friend suggested I cut gluten out of my diet and my symptoms disappeared completely within two days.
- wbhart 12y ago
  In my case, I can't have had any severe gluten issues (at least not intestinal ones) until age 37. Another really strange effect is that since stopping with gluten I have had very vivid childhood memories. I don't believe I had "brain fog", but something interesting happened.
- MollyR 12y ago
  Yea I had this experience as well. I also lost the ability to digest lactose, and got milk allergy/sensitivity(a little bit of both) issues as I got older. I wonder if as we age, certain groups of people experience a failure of digestive enzymes across a variety of biological compounds.
12y ago

maxerickson 12y ago

I always wonder how many people who feel better after giving up bread are dealing with some level of insulin resistance.

spdustin 12y ago

Is there a source for the full text that doesn't involve subscribing? I seem to recall some comments in the past that there are sites that offer the full text of such studies.

serve_yay 12y ago

I don't know why it's so hard to just believe people if they don't want gluten or say it makes them feel bad. It could be a placebo, but how many things you care about are just in your head?