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Thu, 14 Apr 2005 22:06:44 +0000
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<<Disclaimer: Verify this information before applying it to your situation.>>

My reasons for requesting the gene test:
Celiac disease occurs only in genically predisposed individuals.  The genetic inheritance to celiac disease is strongly associated with HLA-DQA1*05-DQB1*02(DQ2) and HLA-DQA1*03-DQB1*0302(DQ8).  The test shows a genetic predisposition to celiac disease. So if you have the gene you either have the disease or can get it in the future. I was very ill and went gluten free for 4 months while waiting to see a GI. All my tests were negative at that time.  My daughter has confirmed celiac and has had many complex complications. Her 4 year old has what appears to be celiac since 12 months  and is on a gluten free diet and doing well.  He tested positive to wheat, barley, rye, and ?oats at this early age but was too young to actually be tested for celiac at Children's Hospital.  We have 4 generations of family alive,
with members in every generation showing various signs of celiac  including a mother almost 90 years old with severe osteoporosis and ongoing compression fractures of the lower spine with severe pain and diarrhea, another member who had Hodgekins Disease at age 32 and Lymphoma at age 50, A 13 year old who I just learned is taking a bottle of pepto bismol each month,  two babies age 6 months and one year who have been kept gluten free and dairy free along with not introducing any food until 8 months.  We have 8 little children and I don't want any more loved ones going from one medical specialist to another with all the complications.   We are just beginning to come to the realization that celiac may be the reason for all of this and it could have been prevented if we had known earlier and could have been informed of the gluten free lifestyle.  If the usual blood tests are done and are negative in family members, how often should they be repeated as you can develop celiac at any time if you have the genes which shows the predisposition.   If you don't have the gene tests do some people have the blood test once and assume they don't have it and never have another test.
So I would like to be the one to have the test, to perhaps prevent other loved ones from going thru the complex medical problems if it is missed and the consequence is years of medical issues without answers.
If anyone has comments or disagress I will post a summary of replies.
Thanks

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

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