If you go read the study, there is a potentially rather severe experimental flaw.
My wife has what seems to be fairly severe gluten intolerance, which shows up approximately 3 days after she consumes even small amounts of glutinous. She had this for years before trying an elimination diet and discovering this effect. Please note that it shows up even if she does not know she has had gluten -- we sometimes are able to sort out ingredients after the fact, and if she has the reaction, it will show up if we look deep enough.
The report says, the test was done by rotating diet every 3 days. If my wife were in the study, her reaction would show up in the next food rotation. So to measure the effect we see with my wife, the experiment would need to measure reactions with approximately a 3 day delay- otherwise it would look like the sensitivity was random. The article does not indicate that this approach was taken so I wonder about error.
As for my wife, her health improved dramatically after eliminating gluten from her diet, though it's pretty clear that she doesn't have ciliac.
Perhaps it's something else in the gluten containing foods (and not in other foods) besides gluten that's having this effect, but if so, avoiding gluten is a very good marker for whatever this gluten-containing-food substitute might be.
Your own study has a pretty severe flaw as well, namely confirmation bias. To do this better you need to set a fixed time period in which you will look for gluten consumption and record everything she eats.
Then every so often you (the partner) looks back X days to see if she's eaten gluten. The key is, you can't know ahead of time whether she had a reaction, which is tricky I know.
The way you're doing it, you would find the same results if she she consumes gluten on a semi-regular basis unknowingly but has no allergy. You're only looking when you expect to find something, which is guaranteed to skew the results.
Your criticism of a randomized, double-blind, placebo-controlled study is essentially "but it doesn't fit my own (unblinded, uncontrolled) anecdote".
You offer an edge case that was not tested by the study.
Your criticism is constructive/relevant, but there is always some area of our understanding that the experiment doesn't reach... basically saying "here is a different but similar hypothesis that was not tested by the trial".
Ok; fair enough. But in the eyes of most readers, this data set generated by an insanely tight scientific design suggests that the optimal allocation might lie in a different direction of research for the individuals suffering these symptoms.
Interestingly: you can perform your own blinded experiment. If I were in your position, I would want to know whether my wife and I were planning our lives around a superstition. The way to answer that: an n-of-1 blinded clinical trial. It's a fair amount of work, but not as much as gluten avoidance, and would answer the question of your own circumstances better than any generalized scientific result from the literature.
I find it infuriating how arrogant and counter-logical American nutritionists are on this issue. They believe that any allergy will show up if you merely put a piece of food in your mouth, and do so almost instantly. For them, the oral challenge is a golden test which always works: https://www.foodallergy.org/diagnosis-and-testing/oral-food-...
"If you have no symptoms, food allergy can be ruled out."
Some of this is obstinate pendanticism about what the word allergy means, but mostly it is just arrogance and refusal to understand reality and logic.
I for example, will throw up in the evening if I eat a large portion of barley for lunch. Obviously, I shouldn't eat barley and my European doctors have no trouble understanding that. But according to American medicine, there is no problem since I obviously pass the oral challenge for barley.
Confirmation bias can be a strong thing. And it affects us all. I'd suggest you rexamine to be sure that it or a similar cognitive bias is not at play, particularly given the wording you used above which is very suggestive of putting yourself in an ideal situation where such biases can work:
>we sometimes are able to sort out ingredients after the fact, and if she has the reaction, it will show up if we look deep enough.
Not saying she doesn't have an issue with gluten (I don't know you two so how the heck would I know?) but given she has symptoms of something you owe it to yourself to make sure you are addressing the correct root cause.
EDIT: looks like cpncrunch's sibling comment is getting at the same thing, only I would not use the term "placebo" for what could be at play here.
When I was first diagnosed, you couldn't buy groceries or eat out _anywhere_. Now, pretty much every restaurant has gluten free options marked on their menu; every supermarket has a wide range of bread, flour, cake mixes, biscuits, and so on; and manufacturers of packaged food are swapping out incidental gluten-free ingredients like wheat starch for gluten-free alternatives. You can bet that's because of people that think gluten-free food is "good for you", rather than the much smaller group of Coeliacs ourselves.
Why do you think it's a good thing for people with celiac disease that pretty much every restaurant has gluten free options on their menu?
Most restaurants advertising gluten-free items don't have dedicated cookware, utensils, cutting surfaces, grill areas, etc., which greatly raises the risk of cross-contamination.
And a significant percentage of gluten-free products in supermarkets are made in shared facilities that process wheat - why count that as helpful for celiac sufferers?
EDIT: I'd seriously love to be able to psychologically go into the average restaurant or fast food place and buy their gluten-free food without getting sick, so I welcome evidence as to why I'm wrong.
I'm just going to listen to my body. Had the blood test twice, negative both times, yet after years of isolation diets and experimentation, it's gluten that gives me diarrhoea and eczema and by not eating it, I'm fine. The doctors I spoke to before I worked out the cause just said "oh it's IBS, you'll just have to manage it".. except by giving up gluten I'm 100% fine, ha!
I appreciate "hipsters" who avoid gluten because they help increase the variety of gluten free food options, but I'd just go paleo if it went away because the sickness isn't worth it.
Ditto. I had stomach issues my entire life, diagnosed with "IBS", and tried a variety of solutions, from prescribed drugs to exercise to removing dairy from my diet. None of these had any discernible effect on my symptoms. Finally in my mid 30s, at my wits end, I tried a gluten-free diet. Now 7 years later, my symptoms are 80-90% improved. And, note, whenever I reintroduce gluten into my diet, my previous symptoms return.
Kind of amazed at the number of people railing against this study and only providing personal anecdotes in return.
Putting aside the dangers of that kind of thinking, it seems clear that a lot of people have become reasonably quite frustrated with real health symptoms they are experiencing. Feeling sick and being brushed off, regardless of the circumstances, must only make the situation harder to deal with.
For those who believe firmly that they've nailed down gluten as the cause, maybe it'd just be safer to just keep those beliefs to yourself and not risk a potentially flippant diagnosis of psychosomatic idiopathy.
I've had IBS nearly all my life. At 40 it started to get worse, and continued to get worse, until I started bleeding rectally. I started have bad diarrhea constantly, so bad that I was hospitalized for dehydration. Nobody could tell me what was wrong. I started food elimination, starting with dairy and gluten. In 4 days all my intestinal problems disappeared, along with lifelong migraines. Added diary back to my diet with no problems, added gluten, full on diarrhea and rectal bleeding. My wife is a biochemist, so she started doing blind testing, I didn't know what I was eating, my body did, I reacted within days of having gluten. I eliminated gluten from my diet and got rid of my IBS for good, 99.9% of my migraines and I lost 30 pounds I still ate the same just replaced the gluten.
My son exhibited ADD/ADHD signs along with some severe emotional immaturity. In the course of my investigation I read that gluten intolerance is a spectrum disorder the symptoms can vary widely, so I took a shot and switched him to a gluten free diet. He reacted in about 18 hours, he became a totally different person. It was stunning, removing the gluten was life changing for him. His grades changed immediately, just looking into his eyes, they looked different. No more up and down no more over reactions, no more anything.
Gluten alters his brain chemistry and it's noticeable within hours of his eating gluten. We didn't tell anyone at first that we removed gluten, but everyone who interacted with him noticed it the first time they saw him after we switched his diet. His teachers wrote notes, his friends wanted to know what meds he was on. We did blind testing with our son, once, the change was so dramatic it scared us, he eliminated gluten and hasn't looked back.
My doctor and his doctors tell us we are succumbing to the effects of mass media. It's no wonder health care is a mess in the U.S.
"Biological explanation for wheat sensitivity found
Weakened intestinal barrier, systemic immune activation may explain symptoms in people without celiac disease
Findings from the study, which was led by researchers from Columbia University Medical Center (CUMC), were reported in the journal Gut.
"Our study shows that the symptoms reported by individuals with this condition are not imagined, as some people have suggested," said study co-author Peter H. Green, MD, the Phyllis and Ivan Seidenberg Professor of Medicine at CUMC and director of the Celiac Disease Center. "It demonstrates that there is a biological basis for these symptoms in a significant number of these patients."
</quote>
If you're wondering about the Gut journal, "Gut is an official journal of the British Society of Gastroenterology. ... IMPACT FACTOR 14.921"
> Weakened intestinal barrier, systemic immune activation may explain symptoms in people without celiac disease
The immune activation is likely caused by a response to the gut biome. One theory is that certain foods are not well absorbed by the digestion system, leading to an overabundance of food for the gut biome. This leads to bacterial overgrowth (or imbalance), causing an immune response. It's this immune response that causes the negative symptoms.
Note that the current blood test for celiac disease will give a false negative if you haven't been eating wheat and have been avoiding gluten for some time, so it's perfectly possible to be celiac and be diagnosed as definitely not celiac if your doctor doesn't know this (which many don't.) Even a probe examination of the small intestine may give you a pass if you have been avoiding gluten for, say, months. The expected damage won't be there.
While the title could be better, celiac's is not a sensitivity, it's an allergy - an autoimmune disorder. That's an entirely different class of complaint.
One of the difficulties in thinking about "gluten sensitivity" and food sensitivities in general, is that it glosses over the complexity of the situation.
For example, when you eat a food, it may interact with your gut biome. In fact, it can change the composition and activity of the bacteria in your gut. For some diseases, it is becoming increasingly clear that the primary cause of the problem is not the food, but how the gut biome reacts to the food. If your body is unable to properly absorb the food, gut bacteria may have an over-abundance of nutrients, causing them to grow too much and release toxins in the body, damaging your ability to absorb food, while also potentially poising you in the process.
This has been implicated in diseases as far ranging as ulcerative colitis, Crohn's, autism, and Celiac disease.
Scientists are finally beginning to catch on to the complexity of the situation. I have Crohn's disease, and am just now starting the Specific Carbohydate diet. The basic idea of the diet is that it starves the bacteria, by limiting foods that reach the final phase of the digestion process, where the problematic bacteria exist. There have been two new studies released this year with positive results. Sadly, its difficult to get funding for this kind of research; the monetary incentives are not there the way they are for drug companies.
The takeaway from this research wasn't "this is all in people's heads", it's "there's something else about wheat that has a negative impact on some folks; science's best guess has been that it's gluten, but it's likely something else in wheat."
If folks have doubts about whether some sensitivity to wheat exists in some people, searching PubMed for "gluten sensitivity" or "NCGS" should hopefully dispel those doubts.
Or I guess you could hang out in an enclosed space with my in-laws after they eat bread. It's pretty unmistakeable.
This is actually flawed thinking. It may not be in the wheat at all, but in how the gut biome reacts to the wheat. This is an important distinction that can lead to very different treatments.
This was about four years from initial study to publication in popular press of the followup study. The polywater error was nearly a decade; it often takes quite a while to fund and perform followup studies.
About three years doesn't seem so long, reproducing and refining studies takes some time. As do securing funding and going through the acceptance process.
The scientists involved never claimed to prove non-Celiac gluten sensitivity to begin with. You are observing the scientific process working correctly.
Whatever it is, something in gluten containing foods really messes up one side of my family (non Celiac). And they universally don't diet or care about eating healthy at all, so I'm inclined to believe them that it's not placebo.
The study suggests it may be another "FODMAP" in foods containing gluten causing the effects. So the practical impact on a diet for "gluten sensitive" people at the moment is the same, although hopefully this advances the science of treatment and more specifically targets research.
Then the article ignores that part about FODMAPs and suggests "go ahead, eat bread!". Great job, science writer.
While I have not read the actual paper, according to the article the participants in the group were very carefully tested against different levels of gluten in their food, and they reported _negative effects_ for each level of gluten contents. Note that the food was _also_ controlled for FODMAPs, again, showing effects even without any known effector. So there does indeed seem to be an gastrointestinal effect of eating these foods, but, again, according to the article, it seems to be psychological in nature.
The conclusion seems valid: gluten content doesn't make a difference, and negative effects are reported even in the absence of gluten and FODMAPs. At least for the group of participants, neither gluten nor other FODMAPs seem relevant.
Until the affected people know better what it is that causes harm to them, they can (and probably should) ignore gluten content.
My wife did an elimination diet a few years ago. It turns out that doesn't do well with either dairy or gluten. If she eats a bagel, she looks 6 months pregnant for a day or two.
[+] [-] Booktrope|9 years ago|reply
My wife has what seems to be fairly severe gluten intolerance, which shows up approximately 3 days after she consumes even small amounts of glutinous. She had this for years before trying an elimination diet and discovering this effect. Please note that it shows up even if she does not know she has had gluten -- we sometimes are able to sort out ingredients after the fact, and if she has the reaction, it will show up if we look deep enough.
The report says, the test was done by rotating diet every 3 days. If my wife were in the study, her reaction would show up in the next food rotation. So to measure the effect we see with my wife, the experiment would need to measure reactions with approximately a 3 day delay- otherwise it would look like the sensitivity was random. The article does not indicate that this approach was taken so I wonder about error.
As for my wife, her health improved dramatically after eliminating gluten from her diet, though it's pretty clear that she doesn't have ciliac.
Perhaps it's something else in the gluten containing foods (and not in other foods) besides gluten that's having this effect, but if so, avoiding gluten is a very good marker for whatever this gluten-containing-food substitute might be.
[+] [-] in_cahoots|9 years ago|reply
Then every so often you (the partner) looks back X days to see if she's eaten gluten. The key is, you can't know ahead of time whether she had a reaction, which is tricky I know.
The way you're doing it, you would find the same results if she she consumes gluten on a semi-regular basis unknowingly but has no allergy. You're only looking when you expect to find something, which is guaranteed to skew the results.
[+] [-] appleflaxen|9 years ago|reply
You offer an edge case that was not tested by the study.
Your criticism is constructive/relevant, but there is always some area of our understanding that the experiment doesn't reach... basically saying "here is a different but similar hypothesis that was not tested by the trial".
Ok; fair enough. But in the eyes of most readers, this data set generated by an insanely tight scientific design suggests that the optimal allocation might lie in a different direction of research for the individuals suffering these symptoms.
Interestingly: you can perform your own blinded experiment. If I were in your position, I would want to know whether my wife and I were planning our lives around a superstition. The way to answer that: an n-of-1 blinded clinical trial. It's a fair amount of work, but not as much as gluten avoidance, and would answer the question of your own circumstances better than any generalized scientific result from the literature.
[+] [-] cpncrunch|9 years ago|reply
That could be the problem. Also youll always notice an improvement due to placebo.
[+] [-] timthelion|9 years ago|reply
I find it infuriating how arrogant and counter-logical American nutritionists are on this issue. They believe that any allergy will show up if you merely put a piece of food in your mouth, and do so almost instantly. For them, the oral challenge is a golden test which always works: https://www.foodallergy.org/diagnosis-and-testing/oral-food-...
"If you have no symptoms, food allergy can be ruled out."
Some of this is obstinate pendanticism about what the word allergy means, but mostly it is just arrogance and refusal to understand reality and logic.
I for example, will throw up in the evening if I eat a large portion of barley for lunch. Obviously, I shouldn't eat barley and my European doctors have no trouble understanding that. But according to American medicine, there is no problem since I obviously pass the oral challenge for barley.
[+] [-] driverdan|9 years ago|reply
Has she been to a doctor?
[+] [-] torgoguys|9 years ago|reply
>we sometimes are able to sort out ingredients after the fact, and if she has the reaction, it will show up if we look deep enough.
Not saying she doesn't have an issue with gluten (I don't know you two so how the heck would I know?) but given she has symptoms of something you owe it to yourself to make sure you are addressing the correct root cause.
EDIT: looks like cpncrunch's sibling comment is getting at the same thing, only I would not use the term "placebo" for what could be at play here.
[+] [-] adambrenecki|9 years ago|reply
When I was first diagnosed, you couldn't buy groceries or eat out _anywhere_. Now, pretty much every restaurant has gluten free options marked on their menu; every supermarket has a wide range of bread, flour, cake mixes, biscuits, and so on; and manufacturers of packaged food are swapping out incidental gluten-free ingredients like wheat starch for gluten-free alternatives. You can bet that's because of people that think gluten-free food is "good for you", rather than the much smaller group of Coeliacs ourselves.
[+] [-] headstorm|9 years ago|reply
Most restaurants advertising gluten-free items don't have dedicated cookware, utensils, cutting surfaces, grill areas, etc., which greatly raises the risk of cross-contamination.
And a significant percentage of gluten-free products in supermarkets are made in shared facilities that process wheat - why count that as helpful for celiac sufferers?
EDIT: I'd seriously love to be able to psychologically go into the average restaurant or fast food place and buy their gluten-free food without getting sick, so I welcome evidence as to why I'm wrong.
[+] [-] petercooper|9 years ago|reply
I appreciate "hipsters" who avoid gluten because they help increase the variety of gluten free food options, but I'd just go paleo if it went away because the sickness isn't worth it.
[+] [-] cgh|9 years ago|reply
These are found in foods that coincidentally also contain gluten and there's a demonstrated effect on digestion.
[+] [-] redpillamerica|9 years ago|reply
[+] [-] mrfusion|9 years ago|reply
I e always been curious if cases like yours are herbicide pesticide related.
[+] [-] xelxebar|9 years ago|reply
Putting aside the dangers of that kind of thinking, it seems clear that a lot of people have become reasonably quite frustrated with real health symptoms they are experiencing. Feeling sick and being brushed off, regardless of the circumstances, must only make the situation harder to deal with.
For those who believe firmly that they've nailed down gluten as the cause, maybe it'd just be safer to just keep those beliefs to yourself and not risk a potentially flippant diagnosis of psychosomatic idiopathy.
[+] [-] bozogluten|9 years ago|reply
I've had IBS nearly all my life. At 40 it started to get worse, and continued to get worse, until I started bleeding rectally. I started have bad diarrhea constantly, so bad that I was hospitalized for dehydration. Nobody could tell me what was wrong. I started food elimination, starting with dairy and gluten. In 4 days all my intestinal problems disappeared, along with lifelong migraines. Added diary back to my diet with no problems, added gluten, full on diarrhea and rectal bleeding. My wife is a biochemist, so she started doing blind testing, I didn't know what I was eating, my body did, I reacted within days of having gluten. I eliminated gluten from my diet and got rid of my IBS for good, 99.9% of my migraines and I lost 30 pounds I still ate the same just replaced the gluten.
My son exhibited ADD/ADHD signs along with some severe emotional immaturity. In the course of my investigation I read that gluten intolerance is a spectrum disorder the symptoms can vary widely, so I took a shot and switched him to a gluten free diet. He reacted in about 18 hours, he became a totally different person. It was stunning, removing the gluten was life changing for him. His grades changed immediately, just looking into his eyes, they looked different. No more up and down no more over reactions, no more anything.
Gluten alters his brain chemistry and it's noticeable within hours of his eating gluten. We didn't tell anyone at first that we removed gluten, but everyone who interacted with him noticed it the first time they saw him after we switched his diet. His teachers wrote notes, his friends wanted to know what meds he was on. We did blind testing with our son, once, the change was so dramatic it scared us, he eliminated gluten and hasn't looked back.
My doctor and his doctors tell us we are succumbing to the effects of mass media. It's no wonder health care is a mess in the U.S.
[+] [-] jamesrcole|9 years ago|reply
Here is an article reporting on some more recent research:
https://www.sciencedaily.com/releases/2016/07/160726123632.h...
<quote>
"Biological explanation for wheat sensitivity found
Weakened intestinal barrier, systemic immune activation may explain symptoms in people without celiac disease
Findings from the study, which was led by researchers from Columbia University Medical Center (CUMC), were reported in the journal Gut.
"Our study shows that the symptoms reported by individuals with this condition are not imagined, as some people have suggested," said study co-author Peter H. Green, MD, the Phyllis and Ivan Seidenberg Professor of Medicine at CUMC and director of the Celiac Disease Center. "It demonstrates that there is a biological basis for these symptoms in a significant number of these patients." </quote>
If you're wondering about the Gut journal, "Gut is an official journal of the British Society of Gastroenterology. ... IMPACT FACTOR 14.921"
https://www.google.com.au/search?q=gut+journal+impact+factor
http://gut.bmj.com/
Disclaimer: I don't have any expertise in this area, and this is just one paper - there may well be contrary studies that I'm not aware of.
[+] [-] JacobJans|9 years ago|reply
The immune activation is likely caused by a response to the gut biome. One theory is that certain foods are not well absorbed by the digestion system, leading to an overabundance of food for the gut biome. This leads to bacterial overgrowth (or imbalance), causing an immune response. It's this immune response that causes the negative symptoms.
[+] [-] crawfordcomeaux|9 years ago|reply
It was trauma & stress/anxiety-induced.
All this report tells me is science is still awful at controlling for emotional state of subjects or detecting trauma.
[+] [-] unknown|9 years ago|reply
[deleted]
[+] [-] Nomentatus|9 years ago|reply
[+] [-] asdfologist|9 years ago|reply
[+] [-] mdpye|9 years ago|reply
[+] [-] JacobJans|9 years ago|reply
For example, when you eat a food, it may interact with your gut biome. In fact, it can change the composition and activity of the bacteria in your gut. For some diseases, it is becoming increasingly clear that the primary cause of the problem is not the food, but how the gut biome reacts to the food. If your body is unable to properly absorb the food, gut bacteria may have an over-abundance of nutrients, causing them to grow too much and release toxins in the body, damaging your ability to absorb food, while also potentially poising you in the process.
This has been implicated in diseases as far ranging as ulcerative colitis, Crohn's, autism, and Celiac disease.
Scientists are finally beginning to catch on to the complexity of the situation. I have Crohn's disease, and am just now starting the Specific Carbohydate diet. The basic idea of the diet is that it starves the bacteria, by limiting foods that reach the final phase of the digestion process, where the problematic bacteria exist. There have been two new studies released this year with positive results. Sadly, its difficult to get funding for this kind of research; the monetary incentives are not there the way they are for drug companies.
[+] [-] glaugh|9 years ago|reply
Here is, for example, an article written by a less linkbaity news source than Business Insider: http://www.npr.org/sections/thesalt/2014/05/22/314287321/sen...
If folks have doubts about whether some sensitivity to wheat exists in some people, searching PubMed for "gluten sensitivity" or "NCGS" should hopefully dispel those doubts.
Or I guess you could hang out in an enclosed space with my in-laws after they eat bread. It's pretty unmistakeable.
[+] [-] JacobJans|9 years ago|reply
This is actually flawed thinking. It may not be in the wheat at all, but in how the gut biome reacts to the wheat. This is an important distinction that can lead to very different treatments.
[+] [-] manmal|9 years ago|reply
[+] [-] pweissbrod|9 years ago|reply
EDIT: at least in the food industry. I bet climate scientists are jealous of the clout
[+] [-] kstenerud|9 years ago|reply
[+] [-] amelius|9 years ago|reply
But how did they "prove" gluten sensitivity in the first place?
Was this work not reproduced by other teams? How could science be erring for so long?
[+] [-] randallsquared|9 years ago|reply
This was about four years from initial study to publication in popular press of the followup study. The polywater error was nearly a decade; it often takes quite a while to fund and perform followup studies.
[+] [-] boomboomsubban|9 years ago|reply
[+] [-] pharrington|9 years ago|reply
[+] [-] jwildeboer|9 years ago|reply
[+] [-] arcticfox|9 years ago|reply
The study suggests it may be another "FODMAP" in foods containing gluten causing the effects. So the practical impact on a diet for "gluten sensitive" people at the moment is the same, although hopefully this advances the science of treatment and more specifically targets research.
Then the article ignores that part about FODMAPs and suggests "go ahead, eat bread!". Great job, science writer.
[+] [-] shezi|9 years ago|reply
The conclusion seems valid: gluten content doesn't make a difference, and negative effects are reported even in the absence of gluten and FODMAPs. At least for the group of participants, neither gluten nor other FODMAPs seem relevant.
Until the affected people know better what it is that causes harm to them, they can (and probably should) ignore gluten content.
[+] [-] bhouston|9 years ago|reply
[+] [-] fumar|9 years ago|reply
[+] [-] totaldis|9 years ago|reply
[+] [-] sethammons|9 years ago|reply
[+] [-] ysavir|9 years ago|reply
> Scientists Who Found Gluten Sensitivity Evidence Have Now Shown It Doesn't Exist
Should really be:
> Scientists Who Found Gluten Sensitivity Evidence Failed to Confirm Original Findings
VERY significant difference. They didn't prove that it doesn't exist, they proved that they couldn't single it out in a particular experiment.
[+] [-] sctb|9 years ago|reply