Posted 7/27/2016 12:48 PM (GMT -8)
To the original OP (Mudmagnetmum),
If you have done your research, you already know that you have to be consuming gluten daily (equivalent of 1 to 2 slices of bread daily) for a period of 8 to 12 weeks for the celiac blood panel. The time is less (2 to 4 weeks) for an endoscopy (obtaining biopsies). It sounds like you have decided to NOT do a gluten challenge for a variety of reasons. I get that! The University of Chicago's celiac website is one of the best around (the world) for reliable and current information.
Over 30% of the population has the genes to POTENTIALLY develop celiac disease. Only 1% of those actually go on to develop it. The gene test just helps exclude celiac disease and should not be used to diagnose it. Heck, my kid has the genes, but she doesn't have CD!
CD symptoms can come and go....present differently throughout a the course of your lifetime. Many never have any symptoms at all (called silent celiac disease).
If you suspect celiac disease and refuse to test for it, you can (not recommended) go on a gluten free diet. Let me tell you it is hard! No eating out for at least six months. Adhering to whole foods diet that is filled with naturally gluten free foods (e.g. veggies, meats, fish, fruit and nuts). Test for lactose intolerance that often accompanies CD due to damaged intestinal villi. Keep a food diary of other intolerances for the same reason -- a damaged gut. Check and verify that all medications, supplements, etc. are gluten free. Study up on the diet from reliable sources and not blogs of mis-guided folks who think gluten free is a healthy diet. The GF diet is healthy for celiacs or those with Non-celiac gluten Intolerance (no actual test for this condition except to rule out celiac disease). My house has two people with CD. Our house is 100% gluten free. Our kid gets her gluten fix outside of the house. So, watch for pet food, gluteny kids, spouses who want to kiss you after downing a beer, can all trigger a celiac-flare up that can last for days, weeks or months (some years!)
I wish you well!