Scientists Who Found Gluten Sensitivity Evidence Failed to Confirm (2015) | Hacker News Reader

Scientists Who Found Gluten Sensitivity Evidence Failed to Confirm (2015)

sciencealert.com

77 pointsneverminder99 comments

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.

>if we look deep enough

That could be the problem. Also youll always notice an improvement due to placebo.

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.

It's interesting to consider that occasions of feeling good may not receive the same post hoc dietary scrutiny. Gluten is really hard to avoid entirely.

A 3 day delay doesn't make much sense. The gluten would be digested and out of her system by then.

Has she been to a doctor?

It's called the IgG intolerance and shows up after 24h-72h of eating food that one doesn't tolerate. The difference between intolerance and allergy (IgE) is that allergy shows up immediately.

IgE allergies show up quickly - but many allergy (mast cell) reactions, are not IgE reactions and may take considerably longer to show up (for example, MCAS reactions generally peak in the middle of the night, unlike IgE reactions.)

Our immune system is complex, IgE is just a tiny part of it. Some introductory reading:

MCAS = Mast Cell Activation Syndrome MCAD (Mast Cell Activation Disorder) = MCAS or mastocytosis

Good MCAS links here: http://strengthflexibilityhealtheds.com/2016/02/04/diagnosin...

http://www.mastattack.org/2014/10/mcad-general-information-p...

http://evilmastcells.com/

http://www.jacionline.org/article/S0091-6749(14)02927-3/full...

Dr. Anne Maitland’s presentation on Allergies & Mast Cell Activation Syndrome in EDS Patients. https://www.youtube.com/watch?v=ktFdr-9rpIM&feature=youtu.be

https://mastcellblog.wordpress.com/mastcellguide/

It isn't necessarilly that unresonable. For example, when a person takes allergy shots (alergens injected directly into the veins) there will be soreness and swelling days after the injection.

By similar logic, a buffer over-run that doesn't cause your program to crash should cause no issues once the data that was being processed at the time has been freed from memory.

Yes, 3 days is way to short...

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.

Do you know what the words "allergy" and "sensitivity" mean? They are being used as jargon by medical professionals, and it's not clear to me that you're using the words the way they do.

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.

Ironically, all the posts calling confirmation bias are, themselves, probably the result of confirmation bias.

>Ironically, all the posts calling confirmation bias are, themselves, probably the result of confirmation bias.

Have a look at my comment (the first reply flagging this as possibly the result of confirmation bias). In what what does it sound to you like it could be the result of confirmation bias?

I really want to know your thinking on that. I try to actively attack such biases as best I can, but as I even mention in that comment, I understand that they affect us all. I'm just not seeing it here, though, so please tell me what you think I'm overlooking.

He's claiming a common lag reaction exists, that does exist. For example, the lectins in oatmeal are known to cause immune reactions with as much as a 3-day lag (common for our immune reactions in general, of course) if the oatmeal is not cooked for long enough. When did you last get a flu only an hour after exposure to a virus? Lag is common (not uniform) in our immune system reactions, which encompass a lot more than IgE reactions.

Ok, but your reply to my question might want to address the question:

>Have a look at my comment (the first reply flagging this as possibly the result of confirmation bias). In what what does it sound to you like it could be the result of confirmation bias?

Did you read the comment that that question was referring to? I never attack any notion of lag in a complex system being real possibility, so I'm not sure where you are coming from or why lag excludes the possibility of confirmation bias.

(And only loosely related, you might want to rethink using the example of abscense of influenza symptoms immediately after exposure to the virus as being in any way similar. You seem to be implying something I don't think you mean to).

Confirmation bias because we know most about IgE reactions, so tend to expect all other evidence to conform to that form of reaction - but reality is much more complex. Temporal (lag) characteristics fall under that.

There's no requirement of prior similar errors with confirmation bias - the bias exists as an expectation and if fulfilled either by ignoring, downplaying or discarding other evidence.

The particular bias, that IgE reactions exhaust the category of genuine allergy reactions is very strong - some allergists who don't read much still have it! It's certainly confirmation bias, together with recency. But we know that's false now, it's recent but well established medicine. We know mast cells do a lot more, now.

MCAS = Mast Cell Activation Syndrome MCAD (Mast Cell Activation Disorder) = MCAS or mastocytosis

Great links here: http://strengthflexibilityhealtheds.com/2016/02/04/diagnosin...

http://www.mastattack.org/2014/10/mcad-general-information-p...

http://evilmastcells.com/

http://www.jacionline.org/article/S0091-6749(14)02927-3/full...

Dr. Anne Maitland’s presentation on Allergies & Mast Cell Activation Syndrome in EDS Patients. https://www.youtube.com/watch?v=ktFdr-9rpIM&feature=youtu.be

https://mastcellblog.wordpress.com/mastcellguide/

You're back to trying to justify the plausibility of the parent being true and not answering the question, at least in a coherent way. Perhaps that's my fault in that it may be unclear which comment the question was referring to since this thread has gotten much longer. Here's the comment:

https://news.ycombinator.com/item?id=13901281

And here's the question:

>Have a look at my comment (the first reply flagging this as possibly the result of confirmation bias). In what what does it sound to you like it could be the result of confirmation bias?

Merely alerting someone that based on the language they used in their comment that there may be confirmation bias at play does not represent confirmation bias on my part. That's what question you were theoretically answering...

You could swap some words in the parent comment about the specific situation for some other completely ordinary and uncontroversial possibility (nothing to do with gluten or even health) and the concern still stands based on how the situation is being investigated. (See my other post about "remembering hits" and "forgetting misses" for the primary flaw expressed in the way he's going about investigating it).

(Note that two people can be wrong at the same time. When I agree that the B responders may indeed be motivated by confirmation bias that doesn't rule out the possibility that the A responder was also motivated by (an opposite) confirmation bias based on quite different previous observations. So, the parent may be interested in a genuine possibility due to a bias and pointing to a real but not the most likely possibility (it's hard to judge how committed he - the parent concerned about delayed reactions - is, so we are bound to interpret his comments in the way that makes the most sense and assume he is making only the rational point that is there to be made); and yet at the same time those who assume he's speaking due to confirmation do so because they don't recognize how common such delayed reactions are and assume he must be stretching a point or imagining such long delays because he's desperate to preserve a prior belief. Note this study was small and quick - 37 people and 9 days, apparently.)

As of now, I don't think you can get away from confirmation bias on the part of the B responders, at least, though. If the parent is true (and yes, those delayed reactions do exist), then those who accuse that poster of confirmation bias can only get there by assuming (consciously or unconsciously) that the reactions they are most familiar with (intolerance and IgE) are exhaustive, since they can't read his mind and know that he would reject future results from better experiments that are consistent with this experiment. He (the parent) raised a real possibility therefore the knock-down proof fails, as for now. We don't know that non-celiac gluten-specific reactions don't exist. That assumption that reactions to gluten or anything else have to be similar to IgE reactions or intolerance is confirmation bias (of the common "what I've seen so far is what there is" kind) - but of course our brains are associative, and we like to save thought and energy, so there's no massive shame in that; confirmation bias is a part of everybody's daily experience in at least small ways because that's how our brains work and must work. Overlooking even the possibility of disconfirming evidence (that in fact exists in similar contexts, such as oats) is quite a strong form of confirmation bias.

It's worth noting that the study doesn't show that there aren't reactions to gluten that aren't celiac reactions; in fact it shows that there are people who have such reactions, it's just that they also react to a lot of foods (this is actually common with MCAS - Mast Cell Activation Syndrome, for example - some people with MCAS end up restricted to a handful of foods.) Such patients turn out to have a helluva lot more problems than just gluten, so they benefit from avoiding a helluva lot more than gluten.

You may to have to disambiguate "concern" "situation" and "he" if this reply doesn't seem suitable to you. But if you meant the original scientist, he didn't allege confirmation bias, even by implication so far as I can tell.

I do mean to compare the lag re toxins and the lag re infections, because these response systems are complex and not severed from one another (both are mediated by mast cells); our system often has to react to foreign particles with a general defense, since it can't clearly distinguish in every case (or immediately) whether it's encountering a toxin or invader, or bacteria vs virus. No doubt errors are made both ways.

Celiac reactions also often have that 3-day lag, btw, very understandable because Celiac is a unique white-cell mediated autoimmune disease.

I meant that in the sense that posts claiming the parent was showing confirmation bias were in themselves likely trying to fault the parent's experiments in a way that reaffirmed their own existing beliefs.

I'm not saying that they were wrong in pointing out confirmation bias, but that they aren't coming from a much more objective perspective themselves.

Gotcha. I appreciate the reply.

I understand what you were thinking now, but I reject that assertion, at least for my comment. In it, I explicitly accept the possibility that he's right, after warning him that based (only) on the text of his comment, he might not have sufficiently guarded himself against a confirmation bias.

I replied because the way he described it is classic of a "remember this hits, forget the misses" cognitive problem. There's no prospective testing described (other than the initial elimination of gluten from her diet). Their confidence seems to mostly rest on post-hoc examinations of diet once something is noticed (so you're missing most of the data and potentially most of the misses) and even gives himself an out if they do an examination and it does miss (the reference to needing a "deep enough" investigation, implying that he open to chalking up a miss as that this time they just didn't look deep enough).

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.

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.

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.

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.

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.

Shouldn't there be some data out there by now on how often such contamination incidents occur?

Most restaurants take the approach that Applebee's takes, which is to disclaim responsibility. Why should someone with celiac disease risk it when milligrams over the course of a day can ruin one's life for potentially weeks?

"Please be aware that during normal kitchen operations involving shared cooking and preparation areas, including common fryer oil, the possibility exists for food items to come in contact with other food products. Due to these circumstances, we are unable to guarantee that any menu item can be completely free of allergens." https://www.applebees.com/Allergen-Info

I hate those messages with a passion. They really reflect poorly on myself and the chefs under my command. As if i would trust anyone in my brigade who didnt keep my standards, and as if i myself, was unable to control my stations.

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.

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/

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.

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.

I said it above but i want to say it again - in a well run kitchen, there should be no shared utensils. Even common kitchen tongs should not be shared between pan's, and should be cleaned between each meal.

In my opinion (not so humble haha), if you can't even do that, you don't belong in a proper restaurant.

Sadly, a lot of hacks exist in the world of food. It's refreshing that you're far from being one of them, and definitely it pays to eat at a restaurant that has pride in what it does. I think more broadly, you just have to choose wisely! I'd rather eat your food once a month, than a chain's once a week.

I do agree with you, the number of chefs i have interviewed who take 'short-cuts' with safety, hygiene and quality is... saddening.

The ones who weren't trained at least, you can help. The ones who have no pride in what they do, the hacks, should (as you said) not be in the world of food. There are a lot of people like you though, and one good thing that popular culture has done is to recognize that good food takes time and care. There might be a lot of people preparing and eating crap, but there's more good, respectable food than ever.

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.

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).

I'm in Japan, might be a bit far for you ;)

My current menu doesn't actually have gluten free items on it (i ask that the customers tell me, and ill do something for them on a one on one basis) - the reason being i just took over this restaurant(so its not my menu for another 2 months when we change it).

I have seen what you describe a lot - its usually by restaurants where the head chef isn't in charge. I personally go over everything about new menus - every single line of text is checked by me - as it reflects on my reputation.

As for cross-contamination, frankly anyone who says they dont have protocols in place is full of shit - we have it for EVERYTHING. In Australia we even legally have to have different coloured cutting boards for different produce types.

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.

Have you tried organic vs non organic gluten containing products?

I e always been curious if cases like yours are herbicide pesticide related.

I haven't. I'd give it a go but I'd need to have a week where I wasn't going far afield(!) :) I eat gluten-free food which isn't marked as organic and have no problems with that so far.

I do acknowledge my reactions might not be gluten per se and could be more subtle. However, my father does have biopsy-confirmed celiac disease, so I'm wondering if I've "caught it early" - GI trouble is the main malady across my father's family so if restricting my diet keeps me away from that, I'll pay that price as I've never been a foodie anyway :-)

Very interesting. A blind test would be interesting too. Eat gluten and gluten free versions of the same food without knowing which is which.

Just for the note, "organic" does not mean "herbicide and pesticide free". It means "using only herbicides and pesticides approved by the governing body".

Frequently quoted in HN:

https://blogs.scientificamerican.com/science-sushi/httpblogs...

You're right. I should have clarified I'm most concerned about roundup.

It might be worth testing what makes one feel better. But you should do it with a blind study, to avoid bias and placebo effect.

It could indeed be that Roundup causes prolbems , although rationally thinking, the pesticides used in organic farming could be a more likely reason - e.g. copper is far more toxic to mammals (LD50 30 mg/kg) than Roundup (5600 mg/kg, safer by a factor of 100), and the amounts used in organic farming can be higher then those used with Roundup in conventional farming.

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.

It's likely FODMAPs: 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.

Exactly this. Most of the foods people with "gluten sensitivity" start to avoid also happen to be triggers for IBS which is most likely their real issue.

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

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

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.

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/ 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...

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.

> 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.

>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.

> 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.

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.

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.

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.

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.

so... were you tested for celiac disease?

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

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...

<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.

> 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.

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.

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.

Inaccurate title. Should be non-celiac gluten sensitivity.

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.

Celiac disease is not an allergy.

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."

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.

> 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.

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

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

"A third, larger study published this month has confirmed the findings."

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?

"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.

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?

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?

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

I would think your friends have been diagnosed with coeliac disease, which has been known since 19th century and for which the mechanism was found in 1950's. The gluten sensitivity mentioned in this article is a different disorder.

How long it takes depends on the doctor. An ex of mine was talking about gluten sensitivity in 2005, but none of the docs she visited would admit to such a thing being possible (correctly, it now seems). According to this article, the original study that gave credence to such claims was done in 2011, and the more complete followup that removed that was presumably 2015 (since this article itself is dated then). A diagnosis in 2012 would have been hip, but not necessarily before the publication of the initial study.

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.

Moderators: (2015) missing.

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.

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

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.

Yes they were. http://www.gastrojournal.org/article/S0016-5085(13)00702-6/a...

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

I don't know where you live, but here in Australia there are a number of brands of gluten-free bread produced by major bread companies.

The bread industry sells gluten-free bread at a premium.

Article is dated 2015 and the original 2014

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.

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.

Thank you! We've updated the submission title.

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".

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?

If "y" isn't a thing, then "is x really y" has been answered.

Gluten is not the only thing wheat is made of. The research suggests, but it has not been confirmed, that FODMAPs may be the thing that many people diagnosed as gluten-sensitive are actually sensitive to, and the gluten is just a proxy.

Reply on news.ycombinator.com