<<Disclaimer: Verify this information before applying it to your situation.>> Summary, part three... I was told I have one gene. My mother later discovered that she has = celiac disease........she is 79 and was having terrible diarrhea problems for a long time before being tested. We are both doing great now that we are = gf, so I have no doubt that I inherited the disease from her.=20 ----------------- We had the whole family tested for gluten and casein antibodies, as well as the genetic testing, through Dr. Fine's lab. I also have the "main gene" that predisposes one to CD (HLA DQ2, I think it was). My husband and daughter had a gene that was also linked with CD. Our son had a gene that predisposes him to "gluten intolerance". I thought that the questionnaire was probably for the sake of their statistics and research, studying genetics and noted ailments and symptoms. I feel that the results of our lab tests are corroborated by our experience. --------------------- From what I've been reading in the research, you DO NOT have to have = both genes (your physician is incorrect). If you have both genes, it is = certain you have it (celiac diease). If you have only one gene, then you = have the "propensity" for celiac (you may have it or you may not) -- = that's where the antibody test comes in. If you have the antibodies, = then you have celiac. Having one gene then validates the antibody = findings. The questionaire: Dr. Fine is conducting research (he does not have an = practice, as such), so I'm sure he is collecting data. He is well = published in many international journals: The Journal of Clinical = Nutrition, Gastroenterology, and The Journal of Gastroenterology (just a = few I can remember).=20 I have one gene (scientists have found two genes that predisposes one to = celiac) -- one of the genes is actually more "prone to cause celiac" = than the other. Any combination: either gene or both genes can cause the = diease. -------------------------- One of the numerous pieces of misinformation often promulgated on this = listserv is the notion that there is "a celiac gene". Celiac disease is a multi-gene = disease which also requires a non-genetic "trigger" to develop. There are two = known genes which, together, seem to account for about 50% of the cases of CD. No = one yet knows what the other genes are or how many of them there are. This is why mainstream medicine does not accept genetic testing as = appropriate for CD. ----------- The simplest way to get an answer to your questions is to e-mail back to = Dr. Fine's office. I have done this before, and he continues with me=20 until it is clear ------------------ The two genes means both parents have celiac,whether with symptoms or = silent celiac without symptoms.=20 when a person has one gene then you must go gluten free because sooner = or later that person will develop it and or already has --------------------- i had dr. fine's test and was told i had two genes. my daughter also = has two=20 genes for cd. we both have had the same symptoms, altho she has been = more=20 seriously affected than i. i've been diagnosed only recently.=20 after being on the gf diet i've noticed that i've felt so much better. = don't=20 know if this answers your question, but the two genes have definitely = been=20 true for us. ------------------------------------ I had the test & it reported two genes. I don't know if that matters or = if you only need one. It seems like that's something Dr. Fine should answer = for you. I had some questions after I got my results & he answered every = email I sent. --------------------------- You have a good point. He should be able to do blind test if he is so=20 confidant. For some reason I don't believe those tests. When GF diet=20 improved jour health condition, just stick with it, because that is the = most=20 relible test so far and is more economical, but there is no money for=20 doctors to be made.=20 --------------------------- If you have one gene, it means that you MAY develop CD sometime later in = life. My granddaughter has one gene, may get it later in life. Her = father has the same gene and already has CD with symptoms. So if you = have 2 genes, just my opinion, I think you definitely will get or have = CD now.=20 ----------------------- I don't think dr.s are anywhere close to having a definitive answer = about the genes. Someone very knowledgeable told me she had read there might = be as many as 20 genes involved. Our doctor said even after all the = correct genes are identified, there is still about 80% of genetic material that = they know very little about, that sort of controls or influences whether the genes become activated (sorry, at this moment I cannot recall the = correct term he used for this material). I think you now have more information about yourself and your genes than you had before, but it may be a long while before any of us have the whole picture. =20 --------------------------- Susan, my daughter has one gene for CD. She has the one that is most = commonly found in those with CD, the DQ2 marker. 95% of all celiacs = have this marker. As for DQ8, only 5-10% of those with celiac have this = marker. You need only one to have the disease, your ENT is mistaken. = As for the questionnaire, that is customary. It is used for research = purposes. --------------------------- I believe if both of your parents have one gene, you will have two genes = and definitely develop celiac disease. If only one parent has the gene, = you will have one gene and may still develop celiac disease. Your = chances would be diminished though.=20 * Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *