CELIAC Archives

Celiac/Coeliac Wheat/Gluten-Free List

CELIAC@LISTSERV.ICORS.ORG

Options: Use Forum View

Use Monospaced Font
Show Text Part by Default
Show All Mail Headers

Message: [<< First] [< Prev] [Next >] [Last >>]
Topic: [<< First] [< Prev] [Next >] [Last >>]
Author: [<< First] [< Prev] [Next >] [Last >>]

Print Reply
Subject:
From:
AnnMarie Ottoy <[log in to unmask]>
Reply To:
AnnMarie Ottoy <[log in to unmask]>
Date:
Mon, 5 Apr 2004 10:39:21 -0500
Content-Type:
text/plain
Parts/Attachments:
text/plain (96 lines)
<<Disclaimer: Verify this information before applying it to your situation.>>

The response I received was overwhelming.  Thank you all so much for your
insight and experience.  At this point I am strongly leaning towards Elaine
Gottschall's Simple Carbohydrate Diet.  I also know to request all test
results so I can see what has been done and where to go from here.  Many
have said I don't need the diagnosis to start the diet and I know this to
be true.  However, I have a one year old daughter and I am concerned for
the future of her health as well.  I would like to know more precisely what
I am dealing with so I can be better prepared for her if need be.  Also my
husband and his mother have dealt with chronic constipation their whole
lives.  My husband and everyone who knows him joke that he has adult ADD
and my mother-in-law was just treated for a form of cancer that has been
linked to Celiac Disease.  I strongly believe I am on the right path.  Here
is a summary of the information I received from everyone.


-  30% of people have the Celiac gene (Celiac Education Day at NYC).
Therefore having the gene is not considered diagnostic in and of itself.

-  There are 2 genes, DQ2 and DQ8

-  You can test positive for one or both genes and not have active Celiac
disease.  The genes need to be "triggered" by an outside event (perhaps an
illness or excessive antibiotic use, no one is sure at this point).

-  Blood work may come up negative if the intestine is not yet damaged
enough for antibodies to get into bloodstream.

-  Very low IgA levels can also cause a false negative.  The body does not
produce enough of the sensitivity markers needed to test positive.

-  Prednisone can suppress formation of antibodies.

-  Blood tests are known to be inaccurate in a lot of cases depending on
the lab that performs the test and a variety of other factors including the
age of the subject (children are more difficult to diagnos due to lower
levels in system) and the stage of the disease (not enough damage has been
caused to intestines for antibodies to leak into the bloodstream).

-  Biopsy remains the standard for diagnosis.

-  Consuming gluten at time of biopsy may lead to false negative.

-  Possible it could be another disease such as Cystic Fibrosis.

The following are recommendations made by everyone who responded to my
inquiries:

Recommended Tests:

-  IgA antitransglutaminase
   IgA antigliadin antibody
   IgG antigliadin antibody
   Total IgA

   Stool test conducted by Dr. Fine at www.enterolab.com (recommended b/c
if not enough damage has been done to intestines to test positive for the
above tests then the stool test can be more definitive and indicate disease
before it has progressed to the bloodstream).

-  Also has been recommended that I have him tested yearly for disease b/c
I do know that he has the gene and it could become active at any time.

-  Also has been recommended that I test for other food allergies.

Recommended Doctors:

-  Dr. Fine, www.enterolab.com for stool testing
-  Dr. Fasano at U of Maryland
-  Dr. Green at the Celiac Center at Columbia

Recommended Books:

-  "Dangerous Grains" Author not mentioned
-  "Breaking the Vicious Cycle"  by Elaine Gottschall
-  "Unraveling the Mystery of Autism and Pervasive, Developmental Delay" by
Karyn Seroussi

Recommended Websits:

-  www.gfcdiet.com
-  http://brain.hastypastry.net/forums/
-  http://forums.delphiforums.com/celiac/messages
-  www.cgiworker.com/danlist/danlist.html
-  Yahoo has lists for gfckids or celiac kids


Recommended Diets:

-  Gluten Free / Casein Free
-  Simple Carbohydrate Diet ("Breaking the Vicious Cycle" by Elaine
Gottschall)

*Support summarization of posts, reply to the SENDER not the CELIAC List*

ATOM RSS1 RSS2