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

Thanks to everyone who responded to my question about differentiating gluten intolerance from celiac disease.  Many kind, supportive people sent helpful information and many others asked for a summary, so here it is.  First, I will summarize my impressions of gluten intolerance, then I'll outline the many excellent resources and alternatives to consider, and finally I'll give a brief history of my case for those who are interested.

Impressions of Gluten Intolerance:
Generally, it seems that gluten intolerance and celiac disease are one in the same, at least for the purpose of eliminating gluten from your diet.  One person said that Gluten Intolerance means that you can not tolerate
gluten and have not had damage in your intestine.  There are several tests for celiac disease which gluten intolerant people may fail, but the ultimate test is whether eating gluten makes you feel bad.  And the ultimate advice seems to be if gluten makes you feel bad, stop eating it.

Tests for CD/GI:
1) Blood tests for antibodies.
They are able to test for Gluten-intolerance with a blood test called the Gliaden Antibody, there are 2 or 3 tests out there, the IgaA, the IgaG and another one, not 100% sure about the names. One person said they were diagnosed as Gluten-intolerant only through a blood test and NOT a biopsy and were thus labeled Gluten-intolerant, not a person with Celiac Disease.
2) Blood tests for genes.
There are genetic tests for celiac disease.  I had them done but my doctor said that at least 30% of the population has these genes but many of these people do not have celiac disease.  Regardless, they seem like a possible route for ruling it out.  They are called the DQ2/DQ8 gene tests and can be performed by Prometheus Lab.  (Just as a precaution, I saw the claim that was sent to my insurance company for $440 for one of these tests.  I'm hoping the insurance will pay for it!)
3) Biopsy (endoscopy).
Although this is widely known as the ultimate test for celiac disease, there are many flaws with this test and it seems to be fairly common to have negative results yet still not be able to tolerate gluten.  One person said that they know people who have had the celiac panel of testing done through Enterolab after blood test screenings for celiac disease were negative.  Some were found to actually have celiac disease and some were found to be negative for celiac disease but positive for gluten intolerance.  Following the advice of Dr. Fine, based on the results of their tests, their symptoms and health problems have been resolved.  Many of the labs are very inaccurate with the biopsy results.  One issue is that the biopsy must be done from a damaged portion of the intestine.  One person said that Most doctors nowadays take very few samples, and take them from the duodenum, not the jejunum (where celiac is generally most prevalent).  The second issue is that the pathologist who analyzes the slides must be knowledgeable.  Prometheus Lab, Joseph Murray, and Enterolab were suggested.
4) Stool test.
Several people referred me to Dr. Fine at Enterolab.  Enterolab's testing is done with stool testing as opposed to blood testing.  The theory behind their testing is that the small intestine is where the transglutaminase antibodies will first appear if you have celiac disease and that this accounts for the fact that there are patients testing negative for celiac disease with the blood tests.  Dr. Kenneth Fine's stool tests tend to pick up CD in earlier stages.  Go to www.finerhealth.com or enterolab.com.  I found this web site extremely helpful and plan to pursue this test.
Other resources:

A few people recommended the book DANGEROUS GRAINS by Dr. Braly and Ron
Hoggan.  It discusses a variety of gluten related  illnesses.

One person referred me to their chapter website at www.houstonceliacs.org for more information.

One person forwarded the link to the following article.  The author proposes a radical hypothesis that wheat, milk, and soy are man-made causes of reduced immune systems.  He supports his hypothesis with historical facts and medical knowledge.  I caution you to read this with a critical eye, but you may learn some useful information.
http://dogtorj.tripod.com/foodstuff/id4.html

Two people said that there is an alternative to consider--an overgrowth of Candida yeast.  Search on google under "The Yeast Connection." This is a good web-site with a lot of information.

There is another reportedly excellent forum for asking celiac questions: http://forums.delphiforums.com/celiac/messages/?ctx=16 


My case:

I began having digestive problems back in college (1985).  It started as gas and bloating.  The two years following college the symptoms got progressively worse to the point where I was doubled over in pain with intestinal cramping and diarrhea.  I went to many different doctors and was diagnosed with irritable bowel syndrome.  Then I went to an allergist and had skin tests done.  The pin pricks showed no reaction, but when he injected wheat just under the skin on my arm, my skin reacted very strongly.  He then pronounced me gluten intolerant, pending the diet test.  I removed gluten from my diet and I felt better, then I reintroduced it and I felt worse, then I removed it altogether for the next five years.  After I read a lot about gluten and learned of celiac disease I decided to get tested to see if I had this "more serious condition."  The same doctor said he would perform the biopsy but said I had to eat wheat three times a day for two weeks prior to the test.  Then something strange happened.  I ate wheat and, after the first day, I had no symptoms.  He performed the biopsy and it was negative.  He said I did not have celiac and if I felt fine, I could go ahead and eat gluten.  

I went along fairly well for the next eight years (but I became lactose intolerant during that time).  Then I got pregnant and, literally, the day I became pregnant I got very ill.  It took me two months to get ill enough to realize that it was the gluten.  I removed it from my diet and felt fine.  This was nearly three years ago.  The past 9 months I have been going to the doctor to find out what exactly is going on.  I tested negative on the antibody test (probably because I was gluten-free) but positive on two genetic tests, including the DQ2 antigen.  I then went on a gluten diet (at least 2 slices of bread a day) for 4-5 weeks prior to taking another biopsy.  I experienced constipation during this time.  (According to my previous symptoms, constipation is stage 1, intense diarrhea is stage 2 which occurs after months or years or not at all until becoming pregnant.)  The biopsy came back negative and it was analyzed by two very knowledgeable pathologists at UCSD.  My doctor told me I had a food intolerance or irritable bowel disease.

Upon receiving the email suggestions, I looked at my biopsy report and saw that the biopsies were taken in the duodenum (1st and 2nd portions), not the jejunum.  I will inquire into that.  Also, I will go back and re-take the antibodies blood test, since it is easy and I have been eating gluten.  Third, I plan to contact Enterolab for the stool test.

Thanks for all your support and suggestions.  I hope this summary and storytelling have helped.  I'd be happy to correspond with anyone who wants to.  

Joanie

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