What YOU should know about GLUTEN SENSITIVITY

All I know is that if loving WebMD is wrong, then I don't wanna be right!

My synopsis of this thread:

There was a scientific study of 37 people that irrefutably proves there is no such thing as gluten intolerance

The people concerned with these findings are NOT being jerks and pointing fingers, only concerned there may be more information that needs to be gathered, and that some people who are GF may indeed be better served to find the true answer to their health issues to avoid further damage to their bodies.

A few people have NO empathy for those of us going through these health issues and their contributions have been "In" or oh noes, jump on a bandwagon.

Given I never get involved in these threads I must say I have learned quite a bit about human nature, AND where to go to get REAL information on the issues that plague me.

Interesting thread with a lot of intelligent conversation. I appreciate those that contributed to furthering my knowledge :flowerforyou:

if you're a celiac i have sympathy for you

if you don't then you're just full of it, plain and simple

Well aren't you a bowl of sunshine, wrapped up in a rainbow.

You do you, and I'll do me.

ETA: No where did I ask for your sympathy, empathy or permission. FYI

to clarity some people just need to be called out for their stupidity as well as their wisdom and intelligence

its clear the vast majority of the people who post here are westerners (usa, canada and western europe) which usually means we tend to not acknowledge stupidity unlike other people

i refuse to feign politeness, courtesy or manners if it means giving people a sense of righteousness they truly don't deserve, instead of coddling these people they should be told they are full of it instead of being told how special they are and how they are right about their self diagnosis

personally i don't pity any of them (except celiacs because i truly do feel bad for them)

i view these symptoms of these alleged gluten free people and compare them with the false sensation of spiders crawling on an arm that most meth addicts deal with, neither of them exist and only get worse because you keep scratching at them

just like climate change and evolution people need to be told when they are wrong, stupid and just plain idiotic

more of a disservice is done to these people if they are being told repeatedly that their self diagnosis is right because they fart funny and scratch themselves

as i recall none of us here are doctors or scientists but rely on the information that they provide to guide us make decisions and thus far science is telling us one thing and people who are *kitten* the other

this isn't so much different that having a debate about climate change or evolution, one side is right, the other side is wrong, no space in between for anecdotes just plain fact

and if you haven't noticed i have zero sympathy for gluten free people, absolutely none (except celiacs because my heart does go out to them)

My synopsis of this thread:

There was a scientific study of 37 people that irrefutably proves there is no such thing as gluten intolerance

The people concerned with these findings are NOT being jerks and pointing fingers, only concerned there may be more information that needs to be gathered, and that some people who are GF may indeed be better served to find the true answer to their health issues to avoid further damage to their bodies.

A few people have NO empathy for those of us going through these health issues and their contributions have been "In" or oh noes, jump on a bandwagon.

Given I never get involved in these threads I must say I have learned quite a bit about human nature, AND where to go to get REAL information on the issues that plague me.

Interesting thread with a lot of intelligent conversation. I appreciate those that contributed to furthering my knowledge :flowerforyou:

if you're a celiac i have sympathy for you

if you don't then you're just full of it, plain and simple

Well aren't you a bowl of sunshine, wrapped up in a rainbow.

You do you, and I'll do me.

ETA: No where did I ask for your sympathy, empathy or permission. FYI

to clarity some people just need to be called out for their stupidity as well as their wisdom and intelligence

its clear the vast majority of the people who post here are westerners (usa, canada and western europe) which usually means we tend to not acknowledge stupidity unlike other people

i refuse to feign politeness, courtesy or manners if it means giving people a sense of righteousness they truly don't deserve, instead of coddling these people they should be told they are full of it instead of being told how special they are and how they are right about their self diagnosis

personally i don't pity any of them (except celiacs because i truly do feel bad for them)

i view these symptoms of these alleged gluten free people and compare them with the false sensation of spiders crawling on an arm that most meth addicts deal with, neither of them exist and only get worse because you keep scratching at them

just like climate change and evolution people need to be told when they are wrong, stupid and just plain idiotic

more of a disservice is done to these people if they are being told repeatedly that their self diagnosis is right because they fart funny and scratch themselves

as i recall none of us here are doctors or scientists but rely on the information that they provide to guide us make decisions and thus far science is telling us one thing and people who are *kitten* the other

this isn't so much different that having a debate about climate change or evolution, one side is right, the other side is wrong, no space in between for anecdotes just plain fact

and if you haven't noticed i have zero sympathy for gluten free people, absolutely none (except celiacs because my heart does go out to them)

Wow, just wow. I have advised you I do not fart. I may pooft a bit, but in lady like way as I am running away from the crowd

'people' as in, they are not human?

Applebee's and Chili's are far from hi end restaurants, I was referring to Tru Lucks. That being said, I personally have a standard order I make in any restaurant, especially a place like Applebee's. Salad, no croutons, grilled chicken dry, and oil and vinegar unless they let me use my dressing.

Putting ALL people who are GF in one group is highly unfair, and just as you call BS on all those who believe they are healthier no than when eating it, I call BS on you grouping us in the same category.

Seems you my dear are in the wrong business :ohwell:

science actually backs me up and just understanding how people act is another one and yes i will lump all GF people together because rarely, and i mean rarely are they usually not the unbearable bunch they are at restaurants

and you still don't understand what i'm saying and thats ok, its ok to coddle people based on their false self diagnosis when science has provided no proof of them

so evolution is a lie, climate change isn't really happening and gluten sensitivity is as real as the easter bunny, totally get it now

and yes i use "people" as something other than human

my TV hero Dr Cox famously said "people are *kitten* coated *kitten* in *kitten* filling" and GF people are right up there when it comes to that statement

My synopsis of this thread:

There was a scientific study of 37 people that irrefutably proves there is no such thing as gluten intolerance

The people concerned with these findings are NOT being jerks and pointing fingers, only concerned there may be more information that needs to be gathered, and that some people who are GF may indeed be better served to find the true answer to their health issues to avoid further damage to their bodies.

A few people have NO empathy for those of us going through these health issues and their contributions have been "In" or oh noes, jump on a bandwagon.

Given I never get involved in these threads I must say I have learned quite a bit about human nature, AND where to go to get REAL information on the issues that plague me.

Interesting thread with a lot of intelligent conversation. I appreciate those that contributed to furthering my knowledge :flowerforyou:

if you're a celiac i have sympathy for you

if you don't then you're just full of it, plain and simple

Well aren't you a bowl of sunshine, wrapped up in a rainbow.

You do you, and I'll do me.

ETA: No where did I ask for your sympathy, empathy or permission. FYI

to clarity some people just need to be called out for their stupidity as well as their wisdom and intelligence

its clear the vast majority of the people who post here are westerners (usa, canada and western europe) which usually means we tend to not acknowledge stupidity unlike other people

i refuse to feign politeness, courtesy or manners if it means giving people a sense of righteousness they truly don't deserve, instead of coddling these people they should be told they are full of it instead of being told how special they are and how they are right about their self diagnosis

personally i don't pity any of them (except celiacs because i truly do feel bad for them)

i view these symptoms of these alleged gluten free people and compare them with the false sensation of spiders crawling on an arm that most meth addicts deal with, neither of them exist and only get worse because you keep scratching at them

just like climate change and evolution people need to be told when they are wrong, stupid and just plain idiotic

more of a disservice is done to these people if they are being told repeatedly that their self diagnosis is right because they fart funny and scratch themselves

as i recall none of us here are doctors or scientists but rely on the information that they provide to guide us make decisions and thus far science is telling us one thing and people who are *kitten* the other

this isn't so much different that having a debate about climate change or evolution, one side is right, the other side is wrong, no space in between for anecdotes just plain fact

and if you haven't noticed i have zero sympathy for gluten free people, absolutely none (except celiacs because my heart does go out to them)

Wow, just wow. I have advised you I do not fart. I may pooft a bit, but in lady like way as I am running away from the crowd

'people' as in, they are not human?

Applebee's and Chili's are far from hi end restaurants, I was referring to Tru Lucks. That being said, I personally have a standard order I make in any restaurant, especially a place like Applebee's. Salad, no croutons, grilled chicken dry, and oil and vinegar unless they let me use my dressing.

Putting ALL people who are GF in one group is highly unfair, and just as you call BS on all those who believe they are healthier no than when eating it, I call BS on you grouping us in the same category.

Seems you my dear are in the wrong business :ohwell:

science actually backs me up and just understanding how people act is another one and yes i will lump all GF people together because rarely, and i mean rarely are they usually not the unbearable bunch they are at restaurants

and you still don't understand what i'm saying and thats ok, its ok to coddle people based on their false self diagnosis when science has provided no proof of them

so evolution is a lie, climate change isn't really happening and gluten sensitivity is as real as the easter bunny, totally get it now

and yes i use "people" as something other than human

my TV hero Dr Cox famously said "people are *kitten* coated *kitten* in *kitten* filling" and GF people are right up there when it comes to that statement

again, I have been diagnosed and see a gastro and neuro and ortho, all of which agree my current diet is helping my medical issues. My medications have been reduced to 1/5.

BUT......let me put myself in your shoes for just a moment, as I have worked front and back of the house for many types of restaurants. From greasy spoon to steakhouse.

The reason I say don't clump everyone in the same category is that you would never have any idea I have any sort of allergy or intolerance. Why? Because I don't need attention. My friend and I eat all over South Florida at the best places and the hole in the wall that makes me drool. She has a multitude of cant haves, as have I.

We look at the menu, ask questions about ingredients and order according to what we can have. The waiter never has an idea of our needs unless it is something like the Greek place that had yummy Tsziki (sp) the waiter overheard my friend say she wished she could have some, but lemon.............he came back with 2 bowls, one made with vinegar instead. Imagine his tip as 50%.

So in conclusion, you are only HEARING the people who would be a PITA no matter what!. Try a Deli in the center of Delray Beach sometime. Just as a customer I wanted to slap someone!!

I do understand where you are coming from. I don't want your pity, or acceptance, just a bit of understanding that some of us do NOT act that way. Ever

First of all, you probably shouldn't say an issue many people are dealing with doesn't exist. You may really upset some people. Also, this article is stupid because it says "science-it works" at the end but nothing in this article cited science. The subjects were "self-identified" as gluten insensitive. Also they cycled through high-gluten, low-gluten, and no-gluten meals blindly and their urine and stools were monitored for 9 days? Any gluten sensitive (professionally diagnosed) or celiac will tell you that 9 days is not long enough to get an accurate result. To have the tolerance testing you have to have had gluten in your diet for several weeks (at least).The urine and stool testing will only show proteins, ketones and malabsorbtion/malnourishment. If someone thinks they have celiac disease or are gluten intolerant they should see their doctor and not rely on a study published on Business Insider.

The two people that had gluten-specific reactions aren't statistically significant for the study, but they do help open the door for other studies that are more geared toward actually seeing if NCGS if real/testable (by raising questions like "why did these two people respond only to gluten, even on a low-FODMAP diet?" or "given Celiac's abysmal diagnosis rate, could these two people have undiagnosed Celiac, and can we find a new way to test for it?"), and (more to my original point) they refute the media's claim that the study "thoroughly proved that NCGS doesn't exist." If it actually did what the media claimed it did, then there wouldn't have even been those couple of people for whom biomarkers did change only for gluten.

No they do not. That's the entire point of statistical significance.

Are there questions raised by this study? Yes.
Is further research needed? Yes.

Do these two subjects have anything to do with it? Absolutely not. (Especially when you consider the fact that 7 of the participants reacted to the placebo arm but NOT the gluten arm).

What's really irritating is how judgmental some people can be. Yes, there are people who claim to be lactose or gluten intolerant and still eat dairy products or consume gluten products. But for those of us who genuinely are intolerant to those foods and would love to be able to consume them, it's intensely frustrating to be lumped in with the idiots who are playing around with "oh, I'm going gluten-free" as a preference, or thinking an upset stomach means they have a food intolerance. Some of us happen to be highly intolerant to such foods. I have gene pairs which make it possible that I might have Celiac disease but the biopsies, so far, have been negative. Even my GI says that Celiac is very difficult to diagnose. But since gluten makes me desperately ill even when it comes into contact with food I eat, it's best for me to avoid it. Hence, it's pretty insulting to be mocked as if I choose not to eat bread as a lifestyle choice because I think it makes me a little gassy. That's simply not the case.

I promised myself I wouldn't get involved in the conversation, but I really just want to thank you for this comment. As a non-glutie it becomes really difficult to understand how, without a serious health issue, people can have this 'I cannot have a drop of gluten or else!!!' mentality. I guess because my understanding is only how it relates to other things, like lactose for example. There are those who need an epi pen to the heart if they sip milk, but for most people it's 'let me take my pill before my ice cream' or 'I'll just have a small scoop otherwise it will upset my tummy'. That's the difference between an allergy and an intolerance to my understanding. So I don't fully understand how one can be 'intolerant' but on the same level of severity with an allergy or something as serious as celiac's.

Because most things in nature actually occur along spectra.

Autism is a spectrum disorder (not everyone professionally diagnosed with Autism is even remotely close to the screaming, rocking, non-communicative stereotype, in fact, a large percentage are high functioning and you may not even know it unless they tell you), PCOS is a syndrome (syndromes, by definition, mean that not everyone has every symptom or to the same degree of severity), depression ranges from mild to severe, hell, even normal states are actually ranges (normal human body temperature, for example, actually ranges between 97F and 99.5F). And even "true" allergic reactions have different ranges -- some people need an epipen to the heart from a single bee sting in order to survive, while others just need a Benedryl to handle the more localized reaction unless stung several times.

Your lactose example is another good one. Some people are fine with low-lactose dairy, such as certain cheeses, fermented products, or butter, but can't have high-lactose foods such as milk or ice cream, while others are so sensitive to lactose that they can't even have butter.

I could go on and on with examples of conditions and states that have a spectrum that still qualifies as a given state, but I think you get the idea.

From http://farrp.unl.edu/resources/gi-fas/symptoms-and-severity :

The symptoms that occur during a food-allergic reaction will not always be the same. The nature of the symptoms and their severity depend upon several factors including the individual, the amount of the offending food ingested, the tissue receptors that are affected, and the length of time since the previous exposure. Some individuals tend to develop only mild symptoms while others may experience much more severe manifestations.

Additionally, not all food intolerances are isolated to intestinal reactions. That's actually part of what makes even "official" Celiac so hard to diagnose (and why the Celiac Society is ecstatic at the prospect of a 50% diagnosis rate by 2025), let alone NCGS (which doesn't have overt autoimmune response or intestinal damage, which is why it's currently eluding doctors and researchers).

I have a friend who has Celiac, but she still had to fight for years to get testing done, because her doctor insisted that she was "just getting over a bug" (due to elevated white blood cell count), and that's why she was lethargic and had brain fog, but she didn't have much in the way of intestinal distress. When she finally found someone to do the tests, both the bloodwork and the biopsy screamed Celiac.

And, regarding non-intestinal issues, from http://celiac.org/celiac-disease/dermatitis-herpetiformis/ regarding gluten-related skin reactions:

Dermatitis Herpetiformis bumps and blisters resemble herpes lesions, hence the name “herpetiformis”, but are NOT caused by the herpes virus. Symptoms of DH tend to come and go, and it is commonly diagnosed as eczema. Symptoms normally resolve when on a strict, gluten-free diet.

DH affects 15 to 25 percent of people with celiac disease who typically have no digestive symptoms.

The National Foundation for Celiac Awareness also says this about NCGS vs Celiac:

Humans are born with an innate immune system. An innate immune response is not antigen specific, meaning that it is nonspecific as to the type of organism it fights. Although its response is immediate against invading organisms, the innate immune system does not have an immunological memory to invading organisms. Its response is not directed towards self tissue, which would result in autoimmune disease.

Unlike non-celiac gluten sensitivity, celiac disease is antigen specific (including tissue-transglutaminase, endomysium and deamidated gliadin antibodies, and in some small children also gliadin antibodies) and does result in an attack on its own tissue. Intestinal damage, or enteropathy, is the direct result.

http://www.celiaccentral.org/non-celiac-gluten-sensitivity/introduction-and-definitions/

BMC Medicine, in the paper cited here - http://www.celiaccentral.org/research-news/collaborative-report-suggests-new-classification-for-gluten-related-disorders/ - states that NGCS is an "immune-mediated" disorder. This puts it in a similar position as such disorders as IBS/IBD, psoriasis, arthritis, certain forms of anemia, and others -- none of which have blood tests as either a single or contributing diagnostic tool; diagnoses are made by looking at the symptoms and ruling other issues out.

For both Celiac and NCGS, there can be non-intestinal effects, because of intestinal permeability. Our intestines are kind of like those soaker hoses (the kind that allow water to sort of "ooze" out throughout their length), things can pass out of them. Usually, those "things" are nutrients that the intestines have broken down into a usable form. The cells inside the intestine control what does and doesn't pass through. Sometimes, however, they don't work right (damage, disorder, or simply because the molecule in question looks similar enough to an authorized molecule), and unauthorized things get through. Once inside the rest of the body, the body sees the molecule as a threat and attacks it. The nature of the attack is largely what determines not only whether the person has an autoimmune disorder (the body then starts attacking itself), an immune mediated disorder (body doesn't attack itself, but suffers a certain amount of damage as a result of the attack on the foreign molecules), or an allergic response (histamine response), but also the nature and severity of the effects, as well as the delay of onset (instant vs delayed, anaphylaxis vs eczema/psoriasis flare-up vs anemia, etc).

Here's some more reading, for those who are interested:

http://www.ncbi.nlm.nih.gov/pubmed/24524388 -- IgG marker measurements of Celiac and NCGS subjects after going gluten-free
http://www.hindawi.com/journals/crii/2013/248482/ -- The overlap of CD, NCGS and Chron's Disease (which I think was mentioned here earlier)

This entire thread reminds me of Migraine.

When I was 11 I had the first migraine with aura that I can remember. This was 43 years ago, and I was on vacation with my best friend in Lower GA. I remember throwing up, and complaining I couldn't see right. They put me in a big brass bed, with all the windows open (it was about 90 degrees in there) sun shining bright with a bare hanging light bulb directly above me.

After throwing up my breakfast of biscuits and sausage gravy, sausage, bacon, ham, chitlins (sp), eggs, fried potatoes, I buried myself deep within the comfort of the bed, knowing my poor mom was going to be so sad that I died while not with her. My head nearly exploded, my body tingled and I kept saying I saw all sorts of lights in front of my eyes.

Here was the conversation outside my bedroom door (insert heavy southern accent) "Well I wonder what type of drugs that girl is on! You know her momma is a drunk, so who KNOWS what she is probably taking. Probably that LSD stuff that makes you see rainbows and stuff"

I wasn't allowed alone with the cousins for the rest of the trip. I was 11 years old.

This continued thru high school when I complained to a teacher and she dragged me by my arm to the school nurse who looked at my pupils, heard my explanation of nausea and sparkly lights (aura) and pronounced I was tripping and should be sent home.

It took me 2 hours to walk 10 blocks, passing out in a neighbors yard and being dragged into my bed with a "Hrumph" that I was high.

When finally taken to a doctor mom was told to be a better parent, that I was on drugs and was self destructive. Headaches couldn't cause all these other symptoms (Headache? My head EXPLODED!!) and to keep a close eye on me.

At approx. 22 years old, while being examined by a gynecologist during my first pregnancy, I explained the symptoms I had. He said "Oh honey, you have Migraines! They are real, and not a headache, and much RESEARCH is being done on how to handle them!"

SOoooooooooo I guess for the 11 years before my diagnosis I didn't have migraines. I suppose until all the research was in (it is still on going, such as foods like gluten increasing the threshold) I do not have migraines.

They are all a figment of my imagination and I jumped on the Migraine bandwagon back when I was a child for attention and to be set apart from the rest. Get attention.

Uh huh. I am sorry but to me, one study doesn't prove a thing. It took 3 separate tests to tell the doctors I had a huge hole in my heart that caused a mini stroke. It was still THERE all along!

Give me more comprehensive studies, with larger groups and more "testing of fecal matter and blood" along the way. I think there is MUCH we are going to learn in the next 10 years about this issue.

For now. please hold the croutons on my salad. Thank You.




ETA:Posts by members, moderators and admins should not be considered medical advice and no guarantee is made against accuracy