Talking to doctor summary, neurological symptoms

Very interesting! Please read and save this for future reference.

Anne Barfield
www.chickenparadise.com

From: Celiac/Coeliac Wheat/Gluten-Free List
Sent: Tuesday, January 16, 2007 1:29 PM

Thanks to all who wrote. The information was wonderful and the kind wishes
were heart warming. I will try to summarize and also give websites. My
original post is at the end of the summary if you missed it. First, it was
conclusive that negative blood tests do not mean one doesn't have Celiac.
The problematic news is that several articles that were sent say that with
neurological symptoms even the intestinal biopsy can be negative. This
seems to be a new area of study when it comes to Celiac. I have posted some
of the comments and article sites below.
Thanks again,
Cece in Arkansas

****************
Dr. Peter Green's book Celiac Disesae, A Hidden Epidemic is an excellent
source. He has devoted one chapter to neurological manifestations.
This is an excellent abstract: Gluten sensitivity as a neurological
illness. You may view it at http://jnnp.bmj.com/cgi/content/full/72/5/560
Also, a recent Mayo Clinic study:
http://www.newswise.com/p/articles/view/524150/
************************
Dr.Hadjivassilious has written several articles on Gluten Sensitivity as a
Neurological Illness with important information on DQ1 gene. Given your
more traditional version of celiac, you likely have the DQ2 or DQ8 gene.
Below is a little more information on DQ1, just because it is not on the
radar of many GI doctors.
http://www.acnr.co.uk/pdfs/volume2issue6/v2i6reviewart2.pdf
http://brain.oxfordjournals.org/cgi/content/full/126/3/685
http://jnnp.bmjjournals.com/cgi/content/full/72/5/560
http://jnnp.bmjjournals.com/cgi/content/full/74/9/1221
***********************
The latest "Living Without" magazine has a wonderful article in it about
this very thing. The neurological (brain) symptoms are just now being
uncovered along with gastro (gut) and dermatitis (skin).
**********************
If I were to recommend one article of his for a good overview this it would
be "Gluten Sensitivity as a Neurological Illness" and you can
read the complete article for free.
********************
I am certainly not an expert, but I have been diagnosed with Celiac and my
Mom has many neurological problems. When she was tested (the usual antibody
blood tests and endoscopy) her tests came up negative for Celiac, however,
our GI (who is wonderful) still felt that she would benefit from going
gluten free and encouraged her to get testing through Enterolab. She did
the stool test and found out she has 2 DQ2 genes (inherited DQ2 from both
parents! they both died young of lymphoma!) she is indeed very intolerant
to gluten.

Our GI explained it to us (because we were confused that she
could have the Celiac gene just like me and tested negative for Celiac) - he
said that there are many people intolerant to gluten who don't necessarily
develop Celiac. He said the gluten attacks their body in a different way.
That the medical community knows what to call it when it attacks the small
intestine or skin, but when gluten attacks other organs or systems, we don't
have a "name" for that yet.
************************************

My original post:
I found 2 1/2 years ago that I had an advanced case of Celiac. My sister had
2 blood tests done and one was negative and one was borderline. She is
having neurological problems that I think might be connected. She is going to the gasterologist to see about an endoscopy. None of our doctors around here
are very knowledgeable (big surprise, uh) and I'm afraid he might refuse to do
the endoscopy because of the blood test results. Have any of you had negative
blood tests and then found out you did have Celiac? Also if anyone knows of good material to take to the doctor on neurological symptoms of Celiac I would appreciate the sites. Thanks for any help you can give.

Cece in Arkansas

Visit the Celiac Web Page at Http://www.enabling.org/ia/celiac/index.html

Very interesting! Please read and save this for future reference.

Anne Barfield
www.chickenparadise.com

From: Celiac/Coeliac Wheat/Gluten-Free List
Sent: Tuesday, January 16, 2007 1:29 PM

Thanks to all who wrote. The information was wonderful and the kind wishes
were heart warming. I will try to summarize and also give websites. My
original post is at the end of the summary if you missed it. First, it was
conclusive that negative blood tests do not mean one doesn't have Celiac.
The problematic news is that several articles that were sent say that with
neurological symptoms even the intestinal biopsy can be negative. This
seems to be a new area of study when it comes to Celiac. I have posted some
of the comments and article sites below.
Thanks again,
Cece in Arkansas

****************
Dr. Peter Green's book Celiac Disesae, A Hidden Epidemic is an excellent
source. He has devoted one chapter to neurological manifestations.
This is an excellent abstract: Gluten sensitivity as a neurological
illness. You may view it at http://jnnp.bmj.com/cgi/content/full/72/5/560
Also, a recent Mayo Clinic study:
http://www.newswise.com/p/articles/view/524150/
************************
Dr.Hadjivassilious has written several articles on Gluten Sensitivity as a
Neurological Illness with important information on DQ1 gene. Given your
more traditional version of celiac, you likely have the DQ2 or DQ8 gene.
Below is a little more information on DQ1, just because it is not on the
radar of many GI doctors.
http://www.acnr.co.uk/pdfs/volume2issue6/v2i6reviewart2.pdf
http://brain.oxfordjournals.org/cgi/content/full/126/3/685
http://jnnp.bmjjournals.com/cgi/content/full/72/5/560
http://jnnp.bmjjournals.com/cgi/content/full/74/9/1221
***********************
The latest "Living Without" magazine has a wonderful article in it about
this very thing. The neurological (brain) symptoms are just now being
uncovered along with gastro (gut) and dermatitis (skin).
**********************
If I were to recommend one article of his for a good overview this it would
be "Gluten Sensitivity as a Neurological Illness" and you can
read the complete article for free.
********************
I am certainly not an expert, but I have been diagnosed with Celiac and my
Mom has many neurological problems. When she was tested (the usual antibody
blood tests and endoscopy) her tests came up negative for Celiac, however,
our GI (who is wonderful) still felt that she would benefit from going
gluten free and encouraged her to get testing through Enterolab. She did
the stool test and found out she has 2 DQ2 genes (inherited DQ2 from both
parents! they both died young of lymphoma!) she is indeed very intolerant
to gluten.

Our GI explained it to us (because we were confused that she
could have the Celiac gene just like me and tested negative for Celiac) - he
said that there are many people intolerant to gluten who don't necessarily
develop Celiac. He said the gluten attacks their body in a different way.
That the medical community knows what to call it when it attacks the small
intestine or skin, but when gluten attacks other organs or systems, we don't
have a "name" for that yet.
************************************

My original post:
I found 2 1/2 years ago that I had an advanced case of Celiac. My sister had
2 blood tests done and one was negative and one was borderline. She is
having neurological problems that I think might be connected. She is going to the gasterologist to see about an endoscopy. None of our doctors around here
are very knowledgeable (big surprise, uh) and I'm afraid he might refuse to do
the endoscopy because of the blood test results. Have any of you had negative
blood tests and then found out you did have Celiac? Also if anyone knows of good material to take to the doctor on neurological symptoms of Celiac I would appreciate the sites. Thanks for any help you can give.

Cece in Arkansas

Visit the Celiac Web Page at Http://www.enabling.org/ia/celiac/index.html