Non-Celiac Gluten Sensitivity May Not Exist

[Anonymous]

Anonymous wrote:

Anonymous wrote:Aside from a few, rare people with confirmed celiac diagnoses, the science is suggesting that "gluten sensitivity" is a fad, and psychosomatic (in your head).

Seems like the real problem is maybe having weird control issues (mental health), than any physical health issue.

http://www.realclearscience.com/blog/2014/05/gluten_sensitivity_may_not_exist.html

Op, why do you care? I mean really, I don't get it. So some people claim they have a gluten sensitivity and are gluten free...why does that matter to you? I have celiac and really don't give a flying eff if someone is gluten free by choice, because of an allergy or celiac, or some "perceived insensitivity". I really don't get why people get so worked up over this.

Haters gotta hate, is my guess.

I also don't care what other people eat as long as they don't offer it to my kid on the grounds they don't believe she can't eat gluten or figure a bite won't hurt her.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Aside from a few, rare people with confirmed celiac diagnoses, the science is suggesting that "gluten sensitivity" is a fad, and psychosomatic (in your head).

Seems like the real problem is maybe having weird control issues (mental health), than any physical health issue.

http://www.realclearscience.com/blog/2014/05/gluten_sensitivity_may_not_exist.html

Op, why do you care? I mean really, I don't get it. So some people claim they have a gluten sensitivity and are gluten free...why does that matter to you? I have celiac and really don't give a flying eff if someone is gluten free by choice, because of an allergy or celiac, or some "perceived insensitivity". I really don't get why people get so worked up over this.

Haters gotta hate, is my guess.

I also don't care what other people eat as long as they don't offer it to my kid on the grounds they don't believe she can't eat gluten or figure a bite won't hurt her.

Ugh I'm sure you've come across those people. I have and I usually want to say a few nasty things to them. "Can you REALLY not eat it or are you just trying to lose weight?" "Oh come on, one piece won't hurt!"

[Anonymous]

Anonymous wrote:

Anonymous wrote:Aside from a few, rare people with confirmed celiac diagnoses, the science is suggesting that "gluten sensitivity" is a fad, and psychosomatic (in your head).

Seems like the real problem is maybe having weird control issues (mental health), than any physical health issue.

http://www.realclearscience.com/blog/2014/05/gluten_sensitivity_may_not_exist.html

Op, why do you care? I mean really, I don't get it. So some people claim they have a gluten sensitivity and are gluten free...why does that matter to you? I have celiac and really don't give a flying eff if someone is gluten free by choice, because of an allergy or celiac, or some "perceived insensitivity". I really don't get why people get so worked up over this.

Part of it is that it has caused problems for people with Celiac in that there is more gluten free food but at a lower quality. People with gluten sensitivities or even just on gluten free diets for the sake of it refer to it as allergies and that causes issues in restaurant kitchens. Restaurants become slack as they know that all these people saying they have allergies really don't. Cross contamination becomes a bigger issue. Also frustration when they order a gluten free dish but then also want something that has gluten in it. They did a survey and many people who were on gluten free diets didn't even know exactly what gluten was - they couldn't define it. those issues have caused problems for a friend of mine who is Celiac. When we go out to eat she now has to really enforce that she has Celiacs and that she isn't just eating gluten free for possible health benefits or to lose weight.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Glad to know my kid had failure to thrive and chronic constipation due to something that doesn't even exist. Silly pediatric gastroenterologists! The 5 of you we saw over a 4 year period should have told us it was all make-believe.

Or if you read the article you would see that it could also be something like FODMAPS rather than the gluten itself. How did they conclusively diagnose a gluten sensitivity? I am not aware of any tests that show a positive result for that. Celiac - yes. Gluten sensitivity - no. Mostly it comes from elimination diets and trial and error, neither of which are specific to gluten.

Or you could not assume I don't know about FODMAPs. We spent 4 years with top-notch doctors doing biopsies, on elimination diets, laxatives, and the only thing that helped was cutting out the gluten containing foods. My kid grew inches, put on lbs, and finally looked like a four year old and not a Biafran toddler. If it doesn't contain gluten it doesn't cause her trouble. She's 8 now and knows more about nutrition and allergies than most adults. Sorry my kid's happy ending doesn't fit your pet theory.

I don't have a pet theory actually. You have a massive chip on your shoulder that obviously weighs you down tremendously. I hope they find a cure for that for you too.

[Anonymous]

Anonymous wrote:No shit! People hear all day long "you will feel so much better when you cut out gluten" or "GF changed my life, I feel fabulous" or "lost 20 lbs without trying going GF" so naturally when they go GF they feel better too. People feel better when they are proactively doing something.

Well wait a second. If people cut out gluten, and feel better, maybe it isn't just psychosomatic. Maybe they feel better because they also cut out the FODMAPs.

Coincidentally, some of the largest dietary sources of FODMAPs -- specifically bread products -- are removed when adopting a gluten-free diet, which could explain why the millions of people worldwide who swear by gluten-free diets feel better after going gluten-free.

[Anonymous]

Anonymous wrote:

Anonymous wrote:No shit! People hear all day long "you will feel so much better when you cut out gluten" or "GF changed my life, I feel fabulous" or "lost 20 lbs without trying going GF" so naturally when they go GF they feel better too. People feel better when they are proactively doing something.

I went gluten free and felt worse!

What did you replace the gluten with? Corn?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Glad to know my kid had failure to thrive and chronic constipation due to something that doesn't even exist. Silly pediatric gastroenterologists! The 5 of you we saw over a 4 year period should have told us it was all make-believe.

Or if you read the article you would see that it could also be something like FODMAPS rather than the gluten itself. How did they conclusively diagnose a gluten sensitivity? I am not aware of any tests that show a positive result for that. Celiac - yes. Gluten sensitivity - no. Mostly it comes from elimination diets and trial and error, neither of which are specific to gluten.

Or you could not assume I don't know about FODMAPs. We spent 4 years with top-notch doctors doing biopsies, on elimination diets, laxatives, and the only thing that helped was cutting out the gluten containing foods. My kid grew inches, put on lbs, and finally looked like a four year old and not a Biafran toddler. If it doesn't contain gluten it doesn't cause her trouble. She's 8 now and knows more about nutrition and allergies than most adults. Sorry my kid's happy ending doesn't fit your pet theory.

NP here. Interested in your child's diagnosis. So it's not celiac disease and it's not FOCMAPs? What was the official diagnosis? In addition to gluten, is there any other food your child has to avoid?

[Anonymous]

I would hardly call a study of 37 people conclusive.

[Anonymous]

Anonymous wrote:I would hardly call a study of 37 people conclusive.

And the sample is ridic: "First, the survey results: The average age of the respondents was 43.5 years and 130 (88%) were women. These numbers are likely a result of sampling bias, but could reflect the demographics of those who engage in a gluten-free diet by choice. For 63% of respondents, the gluten-free diet was either self-initiated or started at the recommendation of an alternative health professional. Inadequate investigation of celiac disease was common (62%), particularly by individuals who self-diagnosed their sensitivity or sought guidance from an alternative health professional"

So it was based on a small batch of self-diagnosed patients. Bad science.

[Anonymous]

You are wrong. Celiac disease is not rare at all! It is the most common genetic disease and its rates increasing rapidly and no one knows why. In adults today, about 1 in 100 have celiac disease, but in children the rates appear to be much higher. A recent study in Spain showed 5 in 100 children have it. This disease does not go away once you have it. It's a hidden epidemic and only 10% of people with celiac disease have been diagnosed. So many people who don't know they have celiac really feel amazingly better gluten-free.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Aside from a few, rare people with confirmed celiac diagnoses, the science is suggesting that "gluten sensitivity" is a fad, and psychosomatic (in your head).

Seems like the real problem is maybe having weird control issues (mental health), than any physical health issue.

http://www.realclearscience.com/blog/2014/05/gluten_sensitivity_may_not_exist.html

Op, why do you care? I mean really, I don't get it. So some people claim they have a gluten sensitivity and are gluten free...why does that matter to you? I have celiac and really don't give a flying eff if someone is gluten free by choice, because of an allergy or celiac, or some "perceived insensitivity". I really don't get why people get so worked up over this.

Part of it is that it has caused problems for people with Celiac in that there is more gluten free food but at a lower quality. People with gluten sensitivities or even just on gluten free diets for the sake of it refer to it as allergies and that causes issues in restaurant kitchens. Restaurants become slack as they know that all these people saying they have allergies really don't. Cross contamination becomes a bigger issue. Also frustration when they order a gluten free dish but then also want something that has gluten in it. They did a survey and many people who were on gluten free diets didn't even know exactly what gluten was - they couldn't define it. those issues have caused problems for a friend of mine who is Celiac. When we go out to eat she now has to really enforce that she has Celiacs and that she isn't just eating gluten free for possible health benefits or to lose weight.

Well, that's one perspective. My kid is a celiac and I'm personally grateful for the increased exposure / availability of GF foods. Yes you may have to really emphasize things with restaurant staff, but the greater exposure is definitely helping educate folks to what celiac / gluten are, and I'll take the need to emphasize / explain things since it means I can easily find a GF cupcake in the freezer section of any grocery store, readily available gluten free pizza crusts, or Annies Rice Mac & Cheese that looks and taste like the regular stuff. It has all helped our family immensely in dealing with this diagnosis in a way that doesn't make our child feel like even more of an outsider.

[Anonymous]

My mom kept blowing up like she was 8 months pregnant and was tested for all sorts of things. She doesn't have Celiac's or a wheat allergy and initially didn't eliminate gluten (though she eliminated a ton of other foods). She eventually went on the FODMAP plan and if she now has gluten, she gets extremely bloated very quickly after eating the item.

I don't know what's truly wrong with her, but I know from my own son's experience with peanut and treenut allergies, you can test negative but still react (as he did during an oral challenge despite having negative blood and RAST tests).

[Anonymous]

Ok. I went gluten free when I went paleo. Now gluten containing stuff gives me migraines and nightmares. Have fun with your theory, but I'm not willing to be miserable to make you happy---nor am I willing to try things and be miserable for a week while it gets out of my system.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Aside from a few, rare people with confirmed celiac diagnoses, the science is suggesting that "gluten sensitivity" is a fad, and psychosomatic (in your head).

Seems like the real problem is maybe having weird control issues (mental health), than any physical health issue.

http://www.realclearscience.com/blog/2014/05/gluten_sensitivity_may_not_exist.html

Op, why do you care? I mean really, I don't get it. So some people claim they have a gluten sensitivity and are gluten free...why does that matter to you? I have celiac and really don't give a flying eff if someone is gluten free by choice, because of an allergy or celiac, or some "perceived insensitivity". I really don't get why people get so worked up over this.

Part of it is that it has caused problems for people with Celiac in that there is more gluten free food but at a lower quality. People with gluten sensitivities or even just on gluten free diets for the sake of it refer to it as allergies and that causes issues in restaurant kitchens. Restaurants become slack as they know that all these people saying they have allergies really don't. Cross contamination becomes a bigger issue. Also frustration when they order a gluten free dish but then also want something that has gluten in it. They did a survey and many people who were on gluten free diets didn't even know exactly what gluten was - they couldn't define it. those issues have caused problems for a friend of mine who is Celiac. When we go out to eat she now has to really enforce that she has Celiacs and that she isn't just eating gluten free for possible health benefits or to lose weight.

Well, that's one perspective. My kid is a celiac and I'm personally grateful for the increased exposure / availability of GF foods. Yes you may have to really emphasize things with restaurant staff, but the greater exposure is definitely helping educate folks to what celiac / gluten are, and I'll take the need to emphasize / explain things since it means I can easily find a GF cupcake in the freezer section of any grocery store, readily available gluten free pizza crusts, or Annies Rice Mac & Cheese that looks and taste like the regular stuff. It has all helped our family immensely in dealing with this diagnosis in a way that doesn't make our child feel like even more of an outsider.

As another Celiac person, I totally agree with you Pp! In the past year or two there have been so many more affordable GF options at the store, GF menus at restaurants and not nearly as many quizzical looks by waitstaff when I explain I can't have gluten. The increase of people going gluten free has improved my celiac life!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Glad to know my kid had failure to thrive and chronic constipation due to something that doesn't even exist. Silly pediatric gastroenterologists! The 5 of you we saw over a 4 year period should have told us it was all make-believe.

Or if you read the article you would see that it could also be something like FODMAPS rather than the gluten itself. How did they conclusively diagnose a gluten sensitivity? I am not aware of any tests that show a positive result for that. Celiac - yes. Gluten sensitivity - no. Mostly it comes from elimination diets and trial and error, neither of which are specific to gluten.

Or you could not assume I don't know about FODMAPs. We spent 4 years with top-notch doctors doing biopsies, on elimination diets, laxatives, and the only thing that helped was cutting out the gluten containing foods. My kid grew inches, put on lbs, and finally looked like a four year old and not a Biafran toddler. If it doesn't contain gluten it doesn't cause her trouble. She's 8 now and knows more about nutrition and allergies than most adults. Sorry my kid's happy ending doesn't fit your pet theory.

I don't have a pet theory actually. You have a massive chip on your shoulder that obviously weighs you down tremendously. I hope they find a cure for that for you too.

The cure will be for people like you to stop arguing that my kid's illness doesn't exist. Until then, I will have a chip on my shoulder. I am not weighed down by it. It's keeping my kid's head above water medically. Every camp director or teacher I speak with who is infected by nonsense theories is more time I have to spend educating them on how ill gluten makes my child. Or time I spend in the ER with a crying child who is projectile vomiting.