<<Disclaimer: Verify this information before applying it to your situation.>>

Thank you so much everyone who responded to my questions.  Not only was the information extremely
helpful, the support from all of you was wonderful. It 
really helped to put me at ease at a frantic time for me.

I'm sorry it has taken me so long to provide this summary.
This was my first post and I was overwhelmed trying to
figure out how to summarize all of this information.  It
was all so helpful and I wanted to make sure to provide
this information to others so that it could help them.

My first question was "What is the difference between 
celiac disease and gluten intolerance?"

One person said that her doctor said there is no difference.
Two people said the difference is a spectrum from low to 
  high.
Three people said celiac disease is dammage to the villi
  and gluten intolerance is no damage to the villi.
Two people said gluten intolerance would eventually lead to
  celiac disease.
Four people said the terms are synonymous.
Two people said gluten intolerance is an allergy.
One person said gluten intolerance does not do damage to
  the intestines and can be outgrown.
One person said gluten intolerance is an IgA immune 
  reaction.
Four said the difference doesn't matter, the treatment is the
  same.
One said to read Dr. Fine at http://www.enterolab.com and
  http://www.celiac.com/st_prod.html?p_prodid=946
One said to read the following:
  http://brain.hastypastry.net/forums/showthread.php? p   =13496#post13496
  http://forums.delphiforums.com/n/main.asp?qu=dq1&find=Search&webtag=celiac&ctx=
search&cl=17692&af=31&o=relevance&be=0

My second question was whether you can have celiac
disease without having the gene for celiac disease.

One said you can have celiac disease without the gene.
One said that her gastroenterologist said 10%of celiacs 
  do not have the gene.
Two people said there is another gene involved.
One person said the New England Journal of Medicine says
  a very small percentage of people have celiac disease but
  do not carry the gene.
One said the gene DQ1 also causes celiac disease.
One said 5% of celiacs do not have the gene.
One person said some people have DQ1 and DQ3 genes
  and have celiac disease.
One said that not all celiac genes have been identified.
One said that 1 - 3% of celiacs do not have DQ2 or DQ8.

It turns out that me and my son have the DQ2 gene so I
guess that means that it's definitely celiac disease for us.  
The doctor I took him to acted like gluten intolerance was 
something totally different than celiac disease and that's
what you call it when you do not carry the gene and
gluten bothers you.  He said
with gluten intolerance, you can eat gluten occassionally
and it will not hurt you.  Whereas with celiac disease,
you can never eat gluten.  I know that I can never eat
gluten, regardless of what any doctor might tell me.   

Thanks again for all of your help!

Cathy

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