Non-Celiac Gluten Sensitivity May Not Exist

[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.

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?

Officially, non-celiac gluten sensitivity. Her small intestinal vili were completely flat.

[Anonymous]

I think that the rare cases are the ones who have the gene, but have not developed Celiac Disease yet. I have celiac disease. My father, half sister and half brother all have horrible digestive issues. Each of them was tested and all were negative. However, my brother did one of those 23 and me gene tests and it shows him with a 50% increased risk of developing it. He has the gene. My sister went gluten free because she was feeling sick (as in need to puke) a lot. She said she felt better after not eating gluten. Just because you have the gene does not mean you will develop it. However, the more gluten you eat, the more of a chance that you may. At least, this is what I have learned from my years of learning about it.

My fingers are crossed for 2017 when the vaccine is hopefully going to be released!!!!! I want a bagel and real pizza more than you could imagine!

[Anonymous]

I'm poster 16:30. If you have not heard of it check out http://www.immusant.com/

They are the ones who have been working on the vaccine.

[Anonymous]

Anonymous wrote:

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.

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?

Officially, non-celiac gluten sensitivity. Her small intestinal vili were completely flat.

another NP here. I find this very interesting. The fact that the villi were flat would totally make you think your DC had Celiac Disease. I was diagnosed with Celiac Disease almost 20 years ago and in my research haven't run across any other condition that flattens the villi like CD. Has your child been tested for the HLA gene that includes Celiac Disease? And had the blood test for it? If the blood test came back negative, why did the doctor perform the small bowel biopsy to determine the flattening of the villi?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

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?

Officially, non-celiac gluten sensitivity. Her small intestinal vili were completely flat.

another NP here. I find this very interesting. The fact that the villi were flat would totally make you think your DC had Celiac Disease. I was diagnosed with Celiac Disease almost 20 years ago and in my research haven't run across any other condition that flattens the villi like CD. Has your child been tested for the HLA gene that includes Celiac Disease? And had the blood test for it? If the blood test came back negative, why did the doctor perform the small bowel biopsy to determine the flattening of the villi?

PP here - forgot to ask if your DC had a second biopsy done after being GF for a while to determine if the villi grew back?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

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?

Officially, non-celiac gluten sensitivity. Her small intestinal vili were completely flat.

another NP here. I find this very interesting. The fact that the villi were flat would totally make you think your DC had Celiac Disease. I was diagnosed with Celiac Disease almost 20 years ago and in my research haven't run across any other condition that flattens the villi like CD. Has your child been tested for the HLA gene that includes Celiac Disease? And had the blood test for it? If the blood test came back negative, why did the doctor perform the small bowel biopsy to determine the flattening of the villi?

Several family members have the gene, including me. She had a negative blood test 3 times in 18 months. She had a coloscopy with biopsy because of severe constipation with spasms. Doctors wanted to rule out polyps. No polyps. Flat villi.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

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?

Officially, non-celiac gluten sensitivity. Her small intestinal vili were completely flat.

another NP here. I find this very interesting. The fact that the villi were flat would totally make you think your DC had Celiac Disease. I was diagnosed with Celiac Disease almost 20 years ago and in my research haven't run across any other condition that flattens the villi like CD. Has your child been tested for the HLA gene that includes Celiac Disease? And had the blood test for it? If the blood test came back negative, why did the doctor perform the small bowel biopsy to determine the flattening of the villi?

PP here - forgot to ask if your DC had a second biopsy done after being GF for a while to determine if the villi grew back?

No, but within 2 months she began to put on weight. She did a year's worth of growing in about 5 months. Within 2 years she caught up to her peers for the most part. Clearly, nutrients were able to enter her system as they hadn't before. Her doctors are pretty confident.

[Anonymous]

In fact, if you watched the Cycle today, you'd discover that meat is good for you and that carbs are bad. In the past, people ate more meat and dairy but were less likely to be obese. What a shock!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

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?

Officially, non-celiac gluten sensitivity. Her small intestinal vili were completely flat.

another NP here. I find this very interesting. The fact that the villi were flat would totally make you think your DC had Celiac Disease. I was diagnosed with Celiac Disease almost 20 years ago and in my research haven't run across any other condition that flattens the villi like CD. Has your child been tested for the HLA gene that includes Celiac Disease? And had the blood test for it? If the blood test came back negative, why did the doctor perform the small bowel biopsy to determine the flattening of the villi?

Several family members have the gene, including me. She had a negative blood test 3 times in 18 months. She had a coloscopy with biopsy because of severe constipation with spasms. Doctors wanted to rule out polyps. No polyps. Flat villi.

What an unusual case. Did she have a biopsy of the small bowel ? You mention the colon, but from what I understand there are no villi in the colon.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

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?

Officially, non-celiac gluten sensitivity. Her small intestinal vili were completely flat.

another NP here. I find this very interesting. The fact that the villi were flat would totally make you think your DC had Celiac Disease. I was diagnosed with Celiac Disease almost 20 years ago and in my research haven't run across any other condition that flattens the villi like CD. Has your child been tested for the HLA gene that includes Celiac Disease? And had the blood test for it? If the blood test came back negative, why did the doctor perform the small bowel biopsy to determine the flattening of the villi?

Several family members have the gene, including me. She had a negative blood test 3 times in 18 months. She had a coloscopy with biopsy because of severe constipation with spasms. Doctors wanted to rule out polyps. No polyps. Flat villi.

What an unusual case. Did she have a biopsy of the small bowel ? You mention the colon, but from what I understand there are no villi in the colon.

Not this PP but the PP with a celiac kid - this seems strange to me too. from everything I've read the biopsy is still *the* diagnostic criteria for celiac, and the blood test is still considered just a secondary screening tool. What explanation did they give you for not classifying your child as a celiac? And I assume they made sure she wasn't IgA deficient?

And sorry if this sounds like I'm doubting you - definitely not! Just seems odd that she would have intestinal damage and not receive the diagnosis, and that they would give her the non-celiac gluten sensitivity diagnosis, which I though was classified by the absence of intestinal damage.

But regardless - am really glad you were able to figure it out and get your daughter healthy!

[Anonymous]

Pretty silly and simplistic article. (is that really a reputable journal?)

Of course it may not exist. And it also may exist. Why do people think that just because something is not yet understood that it must not exist?

From the article: "Consider this: no underlying cause for gluten intolerance has yet been discovered. " Well, yeah! The cause for a lot of illnesses has not yet been discovered. We just have to keep looking.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

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?

Officially, non-celiac gluten sensitivity. Her small intestinal vili were completely flat.

another NP here. I find this very interesting. The fact that the villi were flat would totally make you think your DC had Celiac Disease. I was diagnosed with Celiac Disease almost 20 years ago and in my research haven't run across any other condition that flattens the villi like CD. Has your child been tested for the HLA gene that includes Celiac Disease? And had the blood test for it? If the blood test came back negative, why did the doctor perform the small bowel biopsy to determine the flattening of the villi?

Several family members have the gene, including me. She had a negative blood test 3 times in 18 months. She had a coloscopy with biopsy because of severe constipation with spasms. Doctors wanted to rule out polyps. No polyps. Flat villi.

What an unusual case. Did she have a biopsy of the small bowel ? You mention the colon, but from what I understand there are no villi in the colon.

Not this PP but the PP with a celiac kid - this seems strange to me too. from everything I've read the biopsy is still *the* diagnostic criteria for celiac, and the blood test is still considered just a secondary screening tool. What explanation did they give you for not classifying your child as a celiac? And I assume they made sure she wasn't IgA deficient?

And sorry if this sounds like I'm doubting you - definitely not! Just seems odd that she would have intestinal damage and not receive the diagnosis, and that they would give her the non-celiac gluten sensitivity diagnosis, which I though was classified by the absence of intestinal damage.

But regardless - am really glad you were able to figure it out and get your daughter healthy!

I second this.

It really does sound like she may have celiac disease and may be IGA deficient.

[Anonymous]

Just thought I'd share my experience as food for thought. I had diarrhea, bloating, and intermittent nausea for months. Went to a GI doctor who suspected Celiac and some other things. All negative. I tried an elimination diet, which really turned up nothing. Then, a month later my symptoms began to resolve. Gone a month later. I always think to myself that if I had just stuck with the elimination diet a little longer, I might have linked the symptom resolution with something in my diet.

[Anonymous]

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

What about IBS?

[Anonymous]

So interesting to see a discussion if FODMAP. FODMAP seriously saved my son from horrendous intestinal issues at 15 months old...and weaning him back onto a regular diet after 6 weeks uncovered gluten and dairy intolerance. At 2.5yo we tried gluten and he did well. Dairy, nope and he is still dairy free at 3.5yo He now has constipation and I wonder if gluten isn't part of the blame. Fwiw he never had a biopsy for celiac, just tested negative via blood test twice.