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elle's mom

Medical Differentiation Between Celiac And Gluten Intolerance

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My daughter is diagnosed celiac and I am still learning what I need to know. I have been reading a lot and notice sometimes celiac is classified as a gluten intolerance, but then other times gluten intolerance seems like it's referring to something altogether different, in its own category. Does anyone have a medical explanation for what the difference is? Does it have to do with the antibodies, or the intestinal damage, or something else?

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Many pixels have been used on this question, and as far as I am concerned we are still not much nearer an answer. Sometimes I feel it is all just based on the inadequacy of the testing for celiac, because often the two conditions lead to the same result as far as GI and other gluten issues and other autoimmune diseases. But if the blood tests are negative for the antibodies and the biopsies are negative for villous damage they say you don't have celiac. Some doctors will diagnose on dietary response alone...others demand the gold standard of the biopsy. In the end it really doesn't make a lot of difference (except I suppose from a genetic point of view) because the treatment is the same. Others here may have more to add; I am no expert, just a frustrated gluten intolerant.

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Good question. The terminology seems to have morphed since I was digangosed with celiac disease 6 years ago and as mushroom indicated is in a state of flux. My current understanding, no - my impresssion, is that celiac disease is now being looked at by the scientific community as a subset of "gluten intolerance" that speaks particularly of an inflamatory condition in the small bowel with villi flattening. So "gluten intolerance" is a general term and "Celiac Disease" is a particular term.

But since the term "Celiac Disease" doesn't have a marketable ring to it that makes it easy to remember the media has popularized the term "gluten intolerance" so that now the general population is much more aware of the disease than just a few years ago and equates it with what we, the sufferers, know as Celidac disease. Try "Celiac Disease" on your neighbor or coworker sometime and you will see what I mean. You will get a "Huh? What's that?" look from them every time.

As mushroom indicated, when villi flattening and duodenal inflamation are not evident but gluten seems to be causing other health problems it may just be a matter of time before it progresses to the small intestine.

Though I use the term "gluten intolerance" because of its public recognition, I don't really like it because it communicates the same idea that "lactose intolerance" does. That is to say with Celiac disease there is more than just the discomfort, inconvenience and embarrassment of gas, bloating and diarreah; there is serious structural damage to the mucosa of the small intestine that has serious consequences when ignored.

Hope this helps.

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Good question. The terminology seems to have morphed since I was digangosed with celiac disease 6 years ago and as mushroom indicated is in a state of flux. My current understanding, no - my impresssion, is that celiac disease is now being looked at by the scientific community as a subset of "gluten intolerance" that speaks particularly of an inflamatory condition in the small bowel with villi flattening. So "gluten intolerance" is a general term and "Celiac Disease" is a particular term.

But since the term "Celiac Disease" doesn't have a marketable ring to it that makes it easy to remember the media has popularized the term "gluten intolerance" so that now the general population is much more aware of the disease than just a few years ago and equates it with what we, the sufferers, know as Celidac disease. Try "Celiac Disease" on your neighbor or coworker sometime and you will see what I mean. You will get a "Huh? What's that?" look from them every time.

As mushroom indicated, when villi flattening and duodenal inflamation are not evident but gluten seems to be causing other health problems it may just be a matter of time before it progresses to the small intestine.

Though I use the term "gluten intolerance" because of its public recognition, I don't really like it because it communicates the same idea that "lactose intolerance" does. That is to say with Celiac disease there is more than just the discomfort, inconvenience and embarrassment of gas, bloating and diarreah; there is serious structural damage to the mucosa of the small intestine that has serious consequences when ignored.

Hope this helps.

I went to a new doctor recently who refers to "non-celiac gluten sensitivity". In his view it is still an autoimmune disease - it just hasn't damaged the villi and thus does not result in a celiac diagnosis. He referred to non-celiac gluten sensitivity as causing inflamation and symptoms in other areas of the body resulting in issues like RA, behavior issues in children, etc. He indicated that non-celiac gluten sensitivity is significantly more prevalent than celiac, and seemed to believe that over time non-celiac gluten sensitivity might lead to celiac. I hope this helps.

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The terms "gluten intolerance" and "gluten sensitivity" and "Celiac Disease" are frequently interchanged on this site, and it does lead to great confusion.

This information from the GIG, was updated in 2009.

http://www.gluten.net/downloads/print/glut...leranceflat.pdf

I would be curious to see more documentation and definition of terminology from other sources, as research changes quickly in this field.

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thanks Momma Goose, that was very beneficial.

I think that what it comes down to is that there is a spectrum of varying degees of sensitivity amongst people with gluten intolerance, with the most pronounced and severe condition being Celiac Disease, for which there is a standard set of parameters for diagnosis. From what I have read - and the GIG info confirms - there's really no diagnostic "test" for other forms of gluten intolerance, other than a gluten challenge,. (I've read that some people have had some very nasty experiences doing that.)

My daughter was tested 6 years ago for Celiac. What prompted the testing was a drop off in her growth rate, and off and on stomaches and diarrhea. She had one antibody level that was just barely elevated, all others negative, colonoscopy very normal. So Celiac Disease was ruled out, which was a good thing. There was no further conversation about possible intolerance at a lower level, or the benefits of changing diet.

Coincidentally, at that same time, I began changing my diet to address a very high cholesterol and began eliminating a lot of the refined carbohydrates and junk from the pantry. Brown rice was introduced to the family as a staple. Bread and pasta consumption, while not eliminated, decreased significantly. With my daughter, I focused on having her eat several small meals throughout the day of nutrient dense food. After a couple of years she got back on track growth wise and all was well.

Without going into all the details - they are elsewhere on this board - recently she began experiencing problems and in trying to help her began researching and read about "non celiac gluten intolerance" and began to wonder about a possible connection with gluten. She has been trying to follow a gluten free diet for about two weeks now. I think it has helped her, she seems a little better. On three occasions she has given into temptation and eaten bread or a cookie, and afterwards either has a stomache, or feels yucky and crabby. These are not the severe symptoms a person with celiac disease would experience but she definitely sees a cause and effect

I dont know if we'll go back to the GI guy or not, but 6 years down the road I wonder if their thinking has changed at all.

I will try to relocate some of the better references I found, and post them later.

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Here are some references that may be helpful:

http://www.celiac.com/articles/1101/1/Glut...ewey/Page1.html

this is a power point and is very technical but the beginning slides may be helpful.

http://www.Lame Advertisement.com/Articles...t#256,1,Testing for Non-Celiac Gluten Intolerance

and for you tube fans, this is a very excellent presentation that gives the complete picture:

I recommend this you tube highly!

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I recommend everyone read, "Healthier Without Wheat" by Dr. Stephen Wangen. It's the best explanation of gluten intolerance and celiac.

Dr. Wangen says non celiac gluten intolerance is not less severe than celiac disease, nor is there any evidence that celiac is the end stage of gluten intolerance. 3 million in the US have celiac, yet many more are gluten intolerant.

There are 130 problems caused by gluten intolerance, just one of them is villous atrophy, resulting in celiac disease.

Celiac is a gluten intolerance, but, gluten intolerance is not always celiac.

There is no proof that someone with celiac disease is sicker than someone who is gluten intolerant. I wish flattened villi, had been my only problem, which should repair when gluten free. I have idiopathic sensorimotor axonal neuropathy, along with gluten ataxia. Gluten ataxia is an immune mediated disease accounting for up to 40% of idiopathic sporadic ataxia.

This is a powerpoint demonstration of parts of Dr. Stephen Wangen's book:

http://www.Lame Advertisement.com/Articles/WangenGIG08.ppt

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My daughter was tested 6 years ago for Celiac. What prompted the testing was a drop off in her growth rate, and off and on stomaches and diarrhea. She had one antibody level that was just barely elevated, all others negative, colonoscopy very normal. So Celiac Disease was ruled out, which was a good thing. There was no further conversation about possible intolerance at a lower level, or the benefits of changing diet.

Usually if there is a positive response to the antibody test, that is considered celiac disease but I am no expert. There are those here who do more about it. If you post the results of her bloodwork here, you could get a second look at those test results. You mentioned colonoscopy but celiac disease can only be diagnosed through the small intestine with and endoscopy. Did your DD have that test?

She has been trying to follow a gluten free diet for about two weeks now. I think it has helped her, she seems a little better. On three occasions she has given into temptation and eaten bread or a cookie, and afterwards either has a stomache, or feels yucky and crabby. These are not the severe symptoms a person with celiac disease would experience but she definitely sees a cause and effect

These are symptoms that a person with celiac disease could have. The severity and type of reaction is individualized, different for each person. It doesn't necesarily follow a pattern. Some are even asymptomatic. Even though these seem mild to you, you don't want them to develop into more severe symptoms or health problems. I would review her bloodwork and find out whether an endoscopy was performed and get a copy of the results. That might give you some new clues into her current state of health.

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hi, thanks for the reply.

Yes, it was an endoscopy, I even have the pictures he took while in there.

I don't have the blood tests,would have to request a copy of those. I think it was the anti-gliadin that was elevated, but I am not sure. Some of the things I've read suggest that this test may not be specific for celiac disease.

You're right it will be useful to get those records.

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