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Got Test Results, Still No Answers



I have been sick for 15 years now. I know how long it's been because I was 14 years old and starting my sophomore year of high school when it started. I have chronic nausea, fatigue, and a bunch of other symptoms that are annoying. My main complaint is nausea. I have had so many tests done over the years and they all show that nothing is wrong with my and I am healthy. It wasn't until a few years ago that my GI Dr. sent me to have a test done to see if my gallbladder was sick. I was very surprised when the Dr. told my me gallbladder was not functioning properly and needed to be removed. I thought I was finally going to get well. I had my gallbladder removed and instead of feeling better I now had a new discomfort (bile dumping) to deal with. So that wasn't the answer. I continued to search. In the beginning of the year my Dr. referred me to a OBGYN who specialized in endometriosis. I saw the OBGYN and she felt I had endometriosis and this was what was causing my nausea. I went ahead and had an exploratory surgery. The Dr. found that my uterus was enlarged and my body was pumping too much blood to it. She said she had never seen this before and couldn't tell me if it was causing my symptoms however she felt the best way to treat it was to put me into a medical menopause and see if that helped. So far I am sicker now then I was before. She is pushing me to have a hysterectomy. Hello! I'm only 29 years old and she doesn't even know what this thing is or how to treat it. I'm definitely getting a second opinion on that one. Last week I started seeing a new Internist. When I told her about my nausea and fatigue, she asked if I had my gallbladder removed because it was sick. I told her that was it and she said I know exactly what is wrong with you. She said she thinks I have Celiac Disease, because of my symptoms and the gallbladder situation. She had me do a blood test. I picked up my results today and it shows a negative result for Celiac. So now I am lost again. I see the Dr. again on Friday so she can tell me the results of that test which obviously I couldn't wait for and already know. I have a feeling she is going to want to send me for an endoscopy to confirm that I don't have Celiac. I just don't know if I want to go through any more tests. I feel like giving up. Has anyone else tested negative on the blood tests and then tested positive with the endoscopy? I would appreciate it if anyone has some advice for me. I researched Celiac Disease over the past week and was convinced that it was what I had. Please help.



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Hi Chrisco,
First, have you been eating gluten free? If you have been eating gluten free, you can test negative for Celiac Disease. Second, yes, you can test negative and still have celiac disease. So PLEASE!!!!!....DO THE ENDOSCOPY!!! It is painless. The worst part is, of course, the 'preparation' for the test the night before. The endoscopy should PROVE if you do or do not have celiac disease. So, my advice is.... do the endoscopy....set it up asap and hopefully it will show posative for celiac disease and you will soon be on your way to a healthy life. If you can, go to the library and take out 'The gluten-free Diet' by Elisabeth Hasselbeck. She suffered for years until she was a contestant on 'SURVIVOR' when she realized that she felt GREAT even though she was starving! So, GOOD LUCK and let us know how you make out!

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Hi -I have been eating gluten free for years, and I have not tested postive for celiac because the testing is so unreliable for me and many others. I just know I feel a lot better eating gluten-free!

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Thank you for your comments. I have not started a gluten free diet yet. My doctor wants me to wait until my tests are done. I am going to see my doctor on Friday. I am hoping to set up the endoscopy right away. I was so disappointed yesterday because my doctor was so sure that I have Celiac and although it is going to be so hard to give up wheat I was excited that I may finally have an answer as to why I don't feel well all the time.

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I also have the same question - can you have celiac when the blood teat comes back negative? I have already started the diet and my chronically irritated gut has calmed down and the diarhea has lessened. I want an endoscopy, but would this be counterproductive considering I have been on the diet for 2 weeks already and don't see the GI until the 20th? I would love to hear if your endoscopy shows what the blood tests didn't reveal.

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