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Joe G

Dr. Kenneth Fine (enterolab)

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Gosh, there is a lot of good information in this thread. Everyone should go back and see the videos that Homemaker put on a link to. I think I learned more looking at and listening to that doctor than I have heard or read in the five years that I have been eating gluten-free. I have a granddaughter that is a diagnosed celiac for 10 years and I have the gene/via Enterolab. That along with the videos Homemaker has put up there for all to see, is enough for me. It has convinced me to eat totally, totally gluten-free forever and ever. By the way, I was 59 when we finally figured it out for me, never too late, and I sure have been healthier sinced then. Everyone would do well to listen up before it is too late.

Barbara

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Since you have agreed to disagree, I suggest the topic move back to what it is supposed to be about- Dr Kenneth Fine and Enterolab. A member contacted me today and wanted to know the following info:

Back to Dr. Fine, have any of the signers of the "group letter" sent to him last winter read my note? (I was a signer) And can we reasonably expect him to publish his research--based on his words that I quoted from the email he sent me? Also, did other signers get the email? Am I the only one? Let me know please?

Thanks!

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The best tests that Dr. Fine's company has are the genetic tests for Celiac and Gluten Sensitivity. If you don't have Celiac genes, it is impossible to get villi damage from gluten.

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I can't remember which newscast aired this, but researchers have discovered ANOTHER gene that when tested showed significant implication of its contribution to Celiac. I'll have to do more research to find the journal citation. Wish me luck, because I am NOT the master of the internet that Beverly, Karen, Patti, Peter et al are!

From what I remember, they are trying now to determine whether it alone can predispose an individual to celiac or if it has to work in concert with one of the HLADQ genes . . .

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From what I understand, in Europe there are more than one additional genes that are considered to be celiac genes but are not recognized as such in the U.S. Maybe only Europeans get celiac from these genes?? :P Nora would have answers for you on this, I would think.

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From what I understand, in Europe there are more than one additional genes that are considered to be celiac genes but are not recognized as such in the U.S. Maybe only Europeans get celiac from these genes?? :P Nora would have answers for you on this, I would think.

There are actually 7 more genes that have been recognized as being associated with the development of celiac. It is about time the US got up on this but most doctors done realize it. It is also starting to be recognized that there are celiacs, folks with DH are a prime example, who don't get villi damage until very long into the disease process, if at all. I believe there has been a topic or two posted on this. I think Dr. Fine is far ahead of most of the doctors in the US in recognizing those other associated genes. I also hope he publishes soon, but would rather he publish later rather than sooner. The more info he collects the better in terms of research. I know I don't put much stock in research that is done on samples of only a few folks. His research could save a lot of folks from months of damage when their doctor, like mine, tells them they are diagnosed and to go gluten free and then the person gets sent to a GI who demands they do a challenge and destroy any healing that has aready been done so they can 'officially diagnose' by their criteria. Of course the ideal would be for the doctors here to adopt the mucosal challenge they use in other countries, bypassing the gut and the need for a challenge altogether. But from what I understand those tests are considered to be too sensitive here and show too many positives.

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There are actually 7 more genes that have been recognized as being associated with the development of celiac. It is about time the US got up on this but most doctors done realize it. It is also starting to be recognized that there are celiacs, folks with DH are a prime example, who don't get villi damage until very long into the disease process, if at all. I believe there has been a topic or two posted on this. I think Dr. Fine is far ahead of most of the doctors in the US in recognizing those other associated genes. I also hope he publishes soon, but would rather he publish later rather than sooner. The more info he collects the better in terms of research. I know I don't put much stock in research that is done on samples of only a few folks. His research could save a lot of folks from months of damage when their doctor, like mine, tells them they are diagnosed and to go gluten free and then the person gets sent to a GI who demands they do a challenge and destroy any healing that has aready been done so they can 'officially diagnose' by their criteria. Of course the ideal would be for the doctors here to adopt the mucosal challenge they use in other countries, bypassing the gut and the need for a challenge altogether. But from what I understand those tests are considered to be too sensitive here and show too many positives.

Would you be able to provide a little more information about the 'mucosal challenge' that you refer to. Where is this being done? How does it work? Is there information regarding this kind of testing available?

I recently had testing done by Enterolab. I would very much appreciate your thoughts on them.

Thank you so much,

Emma

Before the testing I had been gluten free for almost 1 1/2 years (except for about 8 pieces of toast and 2 servings of pasta and possibly some cross contamination). I have been dairy free for about 4 years; also soy and egg free. Since gall bladder surgery in Dec. 07 have been unable to eat nuts and many other foods including wheat.

EnteroLab

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I tried to post a short video about Celiac Genes, by Dr. Alesio Fasano, but this site's system won't let me. It is not an advertisement.

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Would you be able to provide a little more information about the 'mucosal challenge' that you refer to. Where is this being done? How does it work? Is there information regarding this kind of testing available?

Here is a link to a past post about the rectal and oral challenges.

https://www.celiac.com/gluten-free/index.ph...aded&start=

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Here is a link to a past post about the rectal and oral challenges.

https://www.celiac.com/gluten-free/index.ph...aded&start=

Thank you so much for providing this. In my mind the rectal mucosal challenge studies seem to lend support to Dr. Fine's stool testing for gluten antibodies. Or am I pipe-dreaming?

Forgot to mention that I also received the invitation posted at the beginning of this thread.

If anyone would like to comment on the Enterolab results I recently received and posted I would appreciate it very much. I will be doing an hour telephone consult in the near future with Phyllis at Enterolab so may be able to get some answers to some of our concerns. Will let you know.

Emma

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I do not think it is abusive to put a child on a gluten free diet without a diagnosis. A parent knows his or her child, and they are entitled to make decisions for that child....If the child improves, then what more proof would a parent need...

No parent wants to see their child in discomfort...

I have a degree in Child Development and Family Relations and I see no abuse in a gluten-free diet...

(Well sorry to revisit this but I had to put in my two cents worth).

I agree! If gluten-free is abuse, then what do you call it when you let your children eat junk food? Geez. What do you call real abuse? These words are chucked around too freely.

There seems strong evidence that both celiac disease and NCGS can be equally devastating to the body. Villi damage is not the be all and end all. I apparently do not have celiac disease but it takes about one crumb to make me ill for days. I run my life as if I have celiac because otherwise I spend my life sick. Incidentally I also have Hashimoto's, which was diagnosed 5 years before the gluten problem became obvious.

SO no, it's not just people with official gold standard celiac diagnosis who need to avoid gluten. And a parent can know what's best for their child, which may be a gluten-free diet without the celiac diagnosis.

Spruster seems to have disappeared from this forum entirely.

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I had debated as to whether I was going to post this, but as a lot of people know -- I can't control my impulsive fingers!

Approximately 20 years ago, I had a friend whose two year-old was diagnosed with Celiac disease. It was confirmed with all three blood tests, endoscope and diet elimination.

With ALL OF THAT, the pediatrician diagnosed my FRIEND with Munchausen's by Proxy!

My friend was divorced, her husband would NOT recognize the pediatric GI's diagnosis, refused to adhere to the gluten-free diet and reported her to Child Protective Services. At one point, they took this child away from her and gave full custody to her father.

After much legal involvement -- and a LOT of money -- she was able to regain custody and her ex-husband then had to have supervised visitation because he endangered the health of the little girl.

We may -- or may not -- have come a long way since those days.

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Yikes what a story. At least it worked out in the end.

We are a wheat-based culture and people sure do like their wheat. Anyone who goes against that is regarded with suspicion.

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What are you going to provide them with? A solid diagnosis from a gastroenterologist or a spit test or even a fecal test. Do it right and you won't have anything to apologize for later on.

Last I checked, the University of Chicago Celiac Center was offering a

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