badhbt Posted October 22, 2013 Report Share Posted October 22, 2013 I just attended a lecture on Celiac disease. I had no idea it was such a growing problem and that is hard to diagnose. I learned that Dysautonomia/POTS can be caused by Celiac Disease. Also the best way to test for it is genetically.Has anyone been tested for it through DNA?Research on Celiac and Dysautonomia http://www.ncbi.nlm.nih.gov/pubmed/15774451 Quote Link to comment Share on other sites More sharing options...
kayjay Posted October 22, 2013 Report Share Posted October 22, 2013 I had a genetic test and everything thing else (i think? ) except a biopsy. The genetic test was not covered by insurance. Gluten free might be the best thing I've done for my health. Quote Link to comment Share on other sites More sharing options...
badhbt Posted October 22, 2013 Author Report Share Posted October 22, 2013 I am getting everything organized to do Gluten free. It is a chore, but so is everything else I do I understand that they think there might be other genes that they don't know about so I don't think testing in inclusive.Did you notice a difference when going gluten free? Did you find the process hard? Quote Link to comment Share on other sites More sharing options...
kayjay Posted October 22, 2013 Report Share Posted October 22, 2013 I am getting everything organized to do Gluten free. It is a chore, but so is everything else I do I understand that they think there might be other genes that they don't know about so I don't think testing in inclusive.Did you notice a difference when going gluten free? Did you find the process hard?It took me months to notice a difference but I will never to back to eating gluten. In the past 3 years I've eaten the cheese off a dominos pizza, one beer, and icing off cake which I know had crumbs in it. No other gluten "cheats". I'm 100% convinced that gluten is bad for meIt is hard at first- it gets better. My husband eats tons of gluten but it usually has no appeal to me. I can't say enough to encourage you to try gluten free. If I can do it I think anyone can. I've never really been on a weight-loss diet and I wasn't sure that I could be gluten free. French bread and brie used to be my favorite meal. The idea of wheat bread is actually a bit repulsive to me now. Quote Link to comment Share on other sites More sharing options...
Mydoggielovesme2 Posted October 23, 2013 Report Share Posted October 23, 2013 Tested positive through biopsies, no DNA. Have been gluten free for 7 months now. Probably one of the best things for my POTS symptoms. GI problems resolving, migraines 50% better, brain fog better, more energy. Just had follow up endoscopy a few wks ago, and Dr were impressed with how well my stomach has healed itself. Going gluten free was not easy. In fact it was down right hard. But the results has been worth it. Quote Link to comment Share on other sites More sharing options...
badhbt Posted October 23, 2013 Author Report Share Posted October 23, 2013 Wow this is encouragement! I happened to have a dinner to go to tonight. I was surprised that the restaurant had a gluten free menu. I was so relieved. I have a lot to learn, but I am hopeful that this will help. I really think my diet and intense workouts is what got me into this mess. Quote Link to comment Share on other sites More sharing options...
Chaos Posted October 23, 2013 Report Share Posted October 23, 2013 Had biopsy, DNA test and one other test all of which were negative for gluten problems. Apparently you can have varying levels of gluten problems however from celiac (which they can test for) down to gluten sensitivity (which I don't think they can test for at least in a regular doc's office). Quote Link to comment Share on other sites More sharing options...
margiebee Posted October 23, 2013 Report Share Posted October 23, 2013 I was told I was "tested" for it but I've been reviewing my testing records and I don't see any test that could definitively show if I have it or not. Too much work to try to push for the proper testing from any of my doctors so I've been thinking about just trying the diet anyway. Its just such a daunting thought to think of adding a restrictive diet on top of all of the other issues I deal with as far as my health Quote Link to comment Share on other sites More sharing options...
Mydoggielovesme2 Posted October 24, 2013 Report Share Posted October 24, 2013 Just a few pointers for those going gluten free. First of all, PLEASE, give yourselves time to adjust. It is a very daunting task, and can get pretty overwhelming, but is so worth all the effort. Second, gluten is in sooooooo many things, from meds, to the glue on stamps, so be diligent in your research. A great web sight for meds is: glutenfreedrugs.com. A GREAT book to help with shopping is: The Gluten Free grocery guide by Triumph Dining. If anyone has any questions, feel free to PM me.Shona Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted October 24, 2013 Report Share Posted October 24, 2013 When I had my personal genome done, the service does report on Celiac, and I'm negative. However, my GI doctor still has me avoid gluten as I may have an intolerance or allergy to some grains. I've also had the blood work and gut biopsy done but at the time, I wasn't eating much in the way of gluten for many years and was supposed to be at least 14 days with lots of gluten... think I made it to 5 or 7 days before I was too sick to continue eating the stuff. Doc told me to stop. I was having other gi testing so they did the biopsy during that just in case but doc felt I wasn't exposed to gluten long enough to see changes that would indicate celiac even if I did have it. Quote Link to comment Share on other sites More sharing options...
badhbt Posted October 30, 2013 Author Report Share Posted October 30, 2013 MightymouseAre you gluten free now? Did that help your symptoms? From what I read it can be pretty tricky to get diagnosed with Celiac disease and even tricker for gluten intolerance. Quote Link to comment Share on other sites More sharing options...
TCP Posted October 30, 2013 Report Share Posted October 30, 2013 I had a few caeliac tests and I have always shown up negative. I have always had issues with the grains and IBS and decided to go gluten-free and it's helped a lot. No more bloating and pain. Quote Link to comment Share on other sites More sharing options...
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