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From:
Ginny Mingolla <[log in to unmask]>
Reply To:
Ginny Mingolla <[log in to unmask]>
Date:
Sun, 23 May 2010 12:15:17 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

In a simple answer to your question, "Do you feel a person could be "gluten intolerant" without having celiac?" YES. Researchers are now considering there are levels of gluten sensitivity the same as there are two types of diabetes. Please go to www.gluten.net, click on Resources, then on Educational Materials to review publications on Celiac Disease, Dermatitis Herpetiformis and Gluten Sensitivity plus many others. This may help to understand the difference. Not everyone has the intestine damage or skin manifestations but are still gluten sensitive and thrive on the gluten free diet.
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Absolutely -- a huge number of people who do not carry the gene for Celiac disease show all the same symptoms if they eat gluten, and the symptoms disappear when the gluten is taken away. It's not Celiac, because the gene isn't there, but it's definitely an intolerance.
The leading doctors in the field support this as well.
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Absolutely!  Gluten intolerance is like lactose intolerance.  If you eat it, you respond with unfavorable symptoms BUT you do not destroy the lining of the small intestine to a point that could cause cancer. Plus, in order to have Celiac, an autoimmune disease, you must have the gene or both genes.  Intolerance is not a genetic disease. Furthermore, if your skin disorder was biopsied and determined DH, then you have Celiac, without question.  Not all Celiacs have DH, but all DH patients have Celiac.http://www.celiaccentral.org/celiac-disease-symptoms/
So in the end, Celiac is a disease involving gluten intolerance.
BUT not all gluten intolerance involves Celiac.
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Your question has not yet been answered by scientists, so it doesn't matter what I "feel" or don't feel about the problem.  There does seem to be a category of people, who, for reasons unknown, show the symptoms of celiac disease, or some of them, and yet do not have all the antibody tests show up positive, and their biopsy might also be negative for frank celiac disease.  They are in a "gray area" - perhaps if they would keep eating gluten, eventually their tests and biopsy would be positive for celiac disease.  One of my sons is in that category.  He had normal IgA antibodies, but very high IgG antibodies, no other identifiable symptoms.  His younger brother is a classically diagnosed celiac.  So after several years of this, older son's growth chart started to slow down and flatten, just before his pubertal growth spurt should be starting.  We had a biopsy done which should only "mild chronic inflammation."  That was confusing to me:
 inflammation from WHAT?  We discussed it with out son, explaining that he didn't have the same diagnosis that his brother did, but something was causing his antibodies to elevate and give him inflammation, so if he agreed, we'd like to try the GF diet for a year and see what happened.  He agreed.  It was hard for me not to want to have his antibodies tested at 6 mos., but I did manage to wait a year.  When the test was run again, the count was within normal limits.  

We still don't know if he would develop celiac disease, but he remains on the GF diet.  
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According to Dr. Peter Greene and other experts, autoimmune gluten intolerance (Celiac Sprue) is, while much more common than previously believed, not nearly so common as non-autoimmune gluten intolerance. So yes, a person can be gluten intolerant w/out having Celiac Sprue. Hard to know just how common gluten intolerance is not only, to quote Greene, because it is "a difficult diagnosis" but also because U.S. medical education on the issue has been misleading and/or inaccurate. European physicians and general public are much more familiar with it than we are.

The fact that your mother had DH does not mean you have any form of gluten intolerance. The fact that it's more common than previously believed does not mean, in the great scheme of things, it's actually all that common. I have a definitive diagnosis of Celiac Sprue (biopsy, I mean), but none of my relatives appear to have it. I say "appear" only because negative tests today do not guarantee negative tests five years from now. There are other autoimmune conditions among close relatives, but not Sprue. 

Since the symptoms of gluten intolerance, both autoimmune and non-autoimmune vary so greatly in both kind and intensity there is no such thing as "all the symptoms." Indicative symptoms and your mother's case add up to a suspicion, but not to a diagnosis.

Have you had a blood test that showed antibodies but a biopsy that did not show villous atrophy? That could mean several things, one of which is that you have Celiac Sprue that has not progressed to the point of destroying your villi. Only time and a gluten-inclusive diet will tell. It could mean you have Sprue, but the biopsy samples were not taken from the correct spots in your small intestines. Or it could mean you have antibodies because you have a non-autoimmune form of gluten intolerance but not Sprue, which is why a properly-done endoscopy and biopsy show no signs of it. 
Non-autoimmune gluten intolerance can pass. Celiac Sprue does not. That is only one reason it is helpful to have a proper diagnosis. Many people, however, on the basis of a strong suspicion of gluten intolerance, try the gluten-free diet and find they feel SO much better that they adopt it even in the absence of a rock-solid diagnosis. So long as the state of medical misinformation and the difficulties of diagnosis are what they are, that seems a reasonable course.
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I went to the site. She actually describes the difference between celiac and gluten intolerance. And they are different.  I can't find anywhere on the site that says they are the same. 

I have always had a negative feeling about individuals who have no medical or nutrition credentials who create their own websites, just because they can, but this one actually doesn't seem so bad. Maybe I'm missing something.
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