
Scientists Who Found Gluten Sensitivity Evidence Failed to Confirm (2015) - neverminder
http://www.sciencealert.com/scientists-who-found-evidence-for-gluten-sensitivity-have-now-shown-it-doesn-t-exist
======
Booktrope
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.

~~~
in_cahoots
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.

~~~
maxmcorp
Confirmation bias does not exclude being correct. I have the same experience
with a family member having gluten intolerance. We have experimented with
diet. On gluten. Off gluten. Eating what is thought to be gluten free and
having the usual reaction. And then finding out it wasnt. Having symptoms
dissapear after a while of gluten etc. etc.

There might be confirmation bias, and it might be an n=1 test, but it is also
100% repeatable.

And it might not be the gluten, but proteins that are in the same foods as
gluten. So when you stop with gluten you also stop with the other proteins.
But that is really irellevant when you got the sensitivity.

~~~
in_cahoots
There's no use in drawing conclusions from a broken experiment, whether it's
from a team of scientists or an at-home test. Having no experience with gluten
insensitivity myself, I am simply suggesting a way to bring some rigor to this
conversation.

------
adambrenecki
As someone who has Coeliac disease: shhhhhhh! /s

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
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.

~~~
marak830
Head Chef here: for a celiac I'll use fresh equipment for their meal. My
cutting boards are bleached and sanitised every night, my knives are
constantly being cleaned and we certainly don't reuse dirty pans.

~~~
headstorm
Where is this at, if you care to share? And do you know if your menu states
anything about this? Most restaurants I look into (and won't eat at as a
result) say stuff like:

"Gluten Free – Did you know that Chef Heather knows each and every ingredient
that goes into her dishes? If you require a gluten free dish, please tell your
server, or ask the Chef about it. Gluten Free is Not available for every
dish." [http://plumtreebistro.net/bistro-
menu/](http://plumtreebistro.net/bistro-menu/)

But when I email the restaurant, such as Plum Bistro, I get replies such as,
"Hi there we are not a gluten free restaurant. We simply offer gluten-free
options it's not advisable to dine with us if you have celiac disease because
cross-contamination may occur."

Or another restaurant, after enquiring about their gluten-free options:
"Thanks for your inquiry. We don't have specific cross contamination
protocols."

I find these, or restaurants that have fine print about shared facilities and
not assuming risk of cross-contamination, to be the norm in Seattle.

~~~
codingdave
There is a difference between what the chef will do for you after a one-on-one
discussion vs. what their marketing people will claim in written documentation
that will come back to bite them in court if you get sick and sue them. We
live in a litigious society, and it impacts our communications.

But they are right -- if you are Celiac, and it is so serious that a shared
utensil is dangerous to you... their CYA statements are probably correct that
it is not advisable to eat there. That doesn't mean you cannot do it... but it
is your decision whether to go against that advice, and take that risk upon
yourself... not their decision to give you a green light and put that risk on
their kitchen staff.

~~~
headstorm
For me, having to have a one on one discussion with the chef (not my comfort
zone) about whether they can make celiac-safe food isn't the same thing as
almost every restaurant having gluten-free items on the menu. BTW, plenty of
restaurants seem to list fried foods that are gluten-free but also mention
that they share the fryer with items containing gluten. That's not legalese,
that's certain contamination.

~~~
marak830
A good chef will put a wok with fresh oil on and fry the gluten free in
that(we can use that oil in our normal fryer top up).

------
petercooper
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.

~~~
cgh
It's likely FODMAPs:
[https://en.m.wikipedia.org/wiki/FODMAP](https://en.m.wikipedia.org/wiki/FODMAP)

These are found in foods that coincidentally also contain gluten and there's a
demonstrated effect on digestion.

~~~
jamesrcole
You claim it's likely FODMAPs. What's your evidence for that?

~~~
basch
the guy who first brought up gluten sensitivity recanted and now cites FODMAPs
as the likely cause.
[https://www.ncbi.nlm.nih.gov/pubmed/23648697](https://www.ncbi.nlm.nih.gov/pubmed/23648697)

which happens to be the article your commenting on to begin with!, just for
some reason a dupe from two years later. its in the first sentence of the
abstract.

~~~
jamesrcole
I have a friend who strictly follows a low FODMAP diet, so I'm fairly familiar
with it. The thing is, if you are following a strict gluten-free diet it is
very likely you are eating lots of high-FODMAP foods! (have a look at
[http://www.ibsdiets.org/fodmap-diet/fodmap-food-
list/](http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/) for example, if
you want to check it out for yourself).

So I don't see how "avoiding gluten" could be confused with FODMAP issues in
most cases.

Also, as I've posted in another comment, there's been more recent research, in
a reputable journal, which has found a biological explanation of wheat
sensitivity. See this article for a write-up:
[https://www.sciencedaily.com/releases/2016/07/160726123632.h...](https://www.sciencedaily.com/releases/2016/07/160726123632.htm)

~~~
basch
the article you posted is for Wheat, not Gluten (a protein)

do you see how it is incorrect to attribute a problem to an ingredient, when a
different ingredient in the Wheat may be causing the problem?

Maybe it's just semantics, but blaming gluten when it likely is something
besides gluten seems wrong. Gluten is not a synonym for Wheat.

~~~
jamesrcole
> do you see how it is incorrect to attribute a problem to an ingredient, when
> a different ingredient in the Wheat may be causing the problem?

You're talking about people with a real health problem. They discover that
avoiding gluten seems to help. In practical terms, to avoid the health problem
they need to communicate to others what is, as best as they can tell, they
need to avoid.

They can't magically click their fingers and know exactly what the problem is.
It takes research like this to find out stuff like that. In the time being
people have to get on with their lives. Now there's an opportunity for them to
know better, an opportunity that didn't exist before.

It's like you're expecting people to somehow have known in advance exactly
what was going on.

~~~
basch
>They discover that avoiding gluten

no thats not what they discover, they discover foods that lack something, that
sometimes correlates with foods lacking gluten ...

how many people eat pure gluten, by itself, as a control. no they eat complex
foods that have many molecules in them.

I am saying, semantically, calling "wheat free" "gluten free" when its
something else in the wheat, is to misidentify the problem.

~~~
jamesrcole
> I am saying, semantically, calling "wheat free" "gluten free" when its
> something else in the wheat, is to misidentify the problem.

I never claimed that gluten was the problem, or that it was somehow accurate
to call gluten the problem if it wasn't gluten!

I was responding to your claim that the issue was likely FODMAPs, and I gave
two responses to that 1) the people you claim likely had improvements by
inadvertently following a low FODMAP diet would likely have been consuming a
high FODMAP diet 2) there was more recent research showing that there was an
alternative explanation for the FODMAP one.

Also, as far as I can tell, they don't know that it is something other than
gluten. They don't know what it is.

> no thats not what they discover, they discover foods that lack something,
> that sometimes correlates with foods lacking gluten ...

What I said was correct. If they avoid gluten they get improvements. That does
not mean that gluten was the problem.

~~~
basch
I wasnt the person that made that claim. I was answering where the "source
was" aka the article you are replying to

your inadvertantly thing doesnt make sense.

------
xelxebar
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.

~~~
M_Grey
People have _always_ been like this... it just used to be that the "doctor"
was always willing to bleed you or physick you, or whatever. Now doctors are
trained only to render useful treatments, but the desire for woo is unchanged.

As you say, people don't like feeling ill, and if the answer is, "You're
human, maybe it's environmental, or it's just you, etc..." people would rather
take the illusion of personal control. That has never changed, and is unlikely
to change unless medicine advances enormously.

People aren't very bright and thoughtful at the best of times. When we're
really hurt, what little reason we have goes out of the window.

------
bozogluten
On mobile

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.

~~~
appleflaxen
so... were you tested for celiac disease?

~~~
r00fus
The Celiac test is expensive and sometimes comes up negative if you're just
gluten intolerant.

------
jamesrcole
This article is reporting on a paper published in 2014.

Here is an article reporting on some more recent research:

[https://www.sciencedaily.com/releases/2016/07/160726123632.h...](https://www.sciencedaily.com/releases/2016/07/160726123632.htm)

<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](https://www.google.com.au/search?q=gut+journal+impact+factor)

[http://gut.bmj.com/](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
> 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.

------
crawfordcomeaux
I regularly had intestinal distress (constipation or diarrhea + bloating &
gas) after most meals as a kid.

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.

------
Nomentatus
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.

------
asdfologist
Inaccurate title. Should be _non-celiac_ gluten sensitivity.

~~~
mdpye
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.

~~~
thrill
Celiac disease is not an allergy.

------
JacobJans
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.

------
glaugh
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."

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...](http://www.npr.org/sections/thesalt/2014/05/22/314287321/sensitive-
to-gluten-a-carb-in-wheat-may-be-the-real-culprit)

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
> but it's likely something else in wheat.

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
So how does this small sample study prove _anything_, apart from the
conclusion that gluten intolerance cannot be self diagnosed?

~~~
pweissbrod
It seems to prove the marketing power behind the word of a scientist

EDIT: at least in the food industry. I bet climate scientists are jealous of
the clout

------
amelius
This is big news.

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
"So long"?

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.

~~~
amelius
I could be wrong, but I have friends who have been diagnosed to be "gluten
sensitive" more than about five years ago. How would that be possible, given
that it takes time for a study to enter clinical practice?

~~~
gus_massa
Did they have an official diagnostic made by a medic or it was a self
diagnostic?

Did the medic do any lab test or only a questionary of self reported symptoms?

~~~
amelius
I'm not sure, but it sounded like they visited a MD.

------
jwildeboer
Moderators: (2015) missing.

------
arcticfox
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.

~~~
shezi
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.

------
bhouston
But there is a huge industry around this so it will be igored.

------
fumar
I wonder if this was somehow funded by the bread industry. People will eat
gluten again. Most of my friends are actively avoiding gluten, I am not.

~~~
Panoramix
Yes they were.
[http://www.gastrojournal.org/article/S0016-5085(13)00702-6/a...](http://www.gastrojournal.org/article/S0016-5085\(13\)00702-6/abstract)

Funding comes partly from George Weston Foods, perhaps Australia's largest
bakery. This is very relevant.

------
totaldis
Article is dated 2015 and the original 2014

------
sethammons
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.

------
ysavir
Misleading title.

> 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
Thank you! We've updated the submission title.

------
Nightshaxx
The one problem is that these people are constantly eating gluten. The gut
needs time to heal from things that bother it, and while inflamed anything
will bother it. I have a gluten intolerance. If I am eating gluten constantly,
I will get sick on many foods for a while; gluten free or not.

I think overall this headline is just click bait. We shouldn't be looking to
prove that "x thing does not exist" because people in real life do experience
x and saying a test proves otherwise doesn't just make that condition vanish.
Instead we should be looking at "is x really y" or "is there something we
don't understand about x".

~~~
hashkb
It won't make your condition vanish, but it will help you find out what is
really happening. If it's not the gluten, and it's something else, wouldn't
you a) want to know? and b) let off the slander campaign against bread?

