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

First of all thank you sooo much to all of you wonderful and intelligent people. All of your replies were very appreciated and positive. I don't know what I would have done without all of the helpful information I have learned from this list in the past 9 months.

My original question was regarding whether to get genetic testing on my 3 1/2 year old daughter diagnosed with CD through blood testing and response to GF diet at 3 years of age. Her Ped. GI recommended genetic testing to provide a definitive dx 6 months after her initial dx as I did not want to put her through endoscopy. He based her dx on previous symptoms, blood testing (AB, IGG 40H--positive >30 and AB IGA 151H--positive >30), reaction to GF diet and my biopsy diagnosed CD.

The information you all provided helped me to realize that there is still a lot of confusion out there regarding the genetics of CD and I guess there was validity for my confusion on the issue of genetics. The only reason I was considering gene testing was because of her response to the GF diet. Her skin (eczema) and severity of constipation have improved but I had to put her back on miralax due to a return of constipation, although not as severe. I am as vigilant about her GF diet as I feel I can be so I'm not sure if it's related to other food allergies, because she remembers her bowel movements being so painful and she does not go unless I remind her to, or because of some other reason. I hate for her to be on miralax permanently but that's another issue. I have decided not to pursue further testing but will certainly keep her on a GF diet for as long as I have control over her diet choices because I know that she has CD. I firmly believe that we mothers are very intuitive regarding our children's needs even if some doctors do not consider our opinions regarding our childrens health as valuable. I am convinced this is the best thing for her considering all of the complications of untreated CD. I understand from the many emails I received, and my own experience and research, that a trigger is needed to activate CD but I am also convinced that there can be much damage done before CD actually kicks in. I base that upon my own personal experience of silent CD symptoms over my 40 years of life that were dismissed as IBS, it's all in your head, etc. etc. etc.  There are so many things that could indicate an intolerance to gluten and silent CD damage (e.g. constipation, diarrhea, bloating, IBS, infertility, non-Hodgkins lymphoma, anemia, depression, the list goes on and on) that I will not subject my daughter's health to, she is too precious of a blessing. 

At any rate, here is a summary of some of the helpful information provided by all of you wonderful people. I guess the bottom line is make your choice based on your own circumstances and what you are comfortable with. We all know what a challenge a GF diet presents, especially for such a young child. I know I shed many more tears upon my daughter's dx than I did upon my own. We all want to protect our precious children while allowing them opportunities to become well-adjusted and healthy young adults who can make good decisions regarding their health and well-being.

Here is a summary of your helpful information:

Celiac has 3 components: 1st--GENETIC--you must be genetically predisposed. Not everyone who is predisposed to celiac actually develops it.  The best indicator for this is identical twins (same genes) where one develops celiac and the other does not.  2nd--TRIGGER--Trigger could be stress, surgery, an infection etc. This trigger stimulates the immune system and in effect activates the celiac. 3rd--CD must  correct itself or in other words go into remission on the GF diet. Unless you have all 3 items, it is not celiac. The gene test still seems to be uncharted territory without real clear guidelines on who should have it and who should not.

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Having the genes for Celiac or breast cancer or anything else predisposes you to those conditions, but does not guarantee you will 
contract them. The interplay among causative factors is not at all well understood, but current theory is that genetically-based diseases occur because of some sort of  interplay among genetic and environmental influences.

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