<<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*