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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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  1. Well, I am disappointed again . . . I just came back from my doctor's appointment. He went over the lab results and everything came back negative. I was just about to ask him about the celiac panel when I saw him writing it in my chart. I was surprised to find out that he had done a celiac panel on my initial labwork and that was part of the negative results. I have not gone gluten-free so I know that didn't confuse the results. He scheduled me for a colonoscopy and still says that he thinks it is Krohn's or Ulcerative Colitis. I told him that I didn't understand how either of those could be my diagnosis since my only "like symptom" was the chronic "D" and he said that was all it took. This just doesn't seem right to me. The colonoscopy will include biopsies so we will see what that brings. I don't understand the negative celiac panel results when I met so many of the symptoms described.
  2. Thanks, Judy. They did start me on an antibiotic through an IV right before the surgery started. Now I am thinking that it was a silly question. LOL I could have had a ear infection and it would elevate the white count! Of course those results don't come with a diagram to give any indication of the source. LOL Thanks for your patience.
  3. One more question - good grief they just keep coming, don't they? In February, I had an exploratory surgery connected with my ovaries. Before the surgery, the anestheoligist (sp?) said that I had an elevated white count. Does anyone know if this is a general problem just telling you that something is going on in your body or if it is associated with celiac disease or any of the digestive disorders specifically? Thanks. One day my questions will run out - hopefully!
  4. I don't know how this can be happening, but I am reading so much that I actually answer a question. On some of the websites I have found, it says that other food allergies could be present along with the celiac disease. I can't remember if the reading said it was caused by the celiac disease. Lactose intolerance was mentioned several times though. I have another question, please. Can the doctor perform the biopsy at the same time that he does the colonoscopy or is that a different route altogether? LOL The website I read on the colonoscopy said that it stops at the end of the large colon, if I am not mistaken. But I spoke with a friend of mine who is a nurse, and she said that she felt like the doctors could do it at the same time, but they schedule it for different procedures so that the insurance can be billed twice. Does anyone know?
  5. I am going to be assertive. I would like the colonoscopy after 7 years of chronic "D" just for my own peace of mind. I plan on taking my notes to the doctor with me. If he is willing to discuss them with me, then great. If not, I will shop for a different doctor that is more willing to discuss my health. And I am going to look into the collagenous colitis. I am finally getting over my fear of wondering what is going on with my body and ready to do something about it. I have been looking at the gluten-free sites and I think that there are some great alternatives out there. At least they seem great if they taste well enough, but I would be willing to forego a little taste just to get out of the bathroom once in a while! I am preparing for the right mindset. I don't want to go gluten-free until after the tests but I am catching myself examining all foods. I have already gone through my pantry. I have scared myself about later eating anything besides salad with my own salad dressing that I will bring to a restaurant. Tonight I was on the phone with a friend who was telling me the dinner menu for the night. I was making a mental checklist in my head - Can't have that. Might be able to have that, etc. Just making my preparations.
  6. Thank you. That is my plan. On the 26th, I return to the doctor to get the results of the last bloodwork. When I go in, I am going to request the Celiac panel and take a list of what that entails to make sure he gets everything. I am sure that he will want to do the colonoscopy after chronic "D" for seven years, and I don't have a problem with that. I just want to make sure that he does the celiac panel, too. I am also planning on doing the genetic testing for myself and my daughter. Thank you for your response! Misty
  7. Thank you, Ianm, for the information on vaso vagal! I must not have made myself clear on that being separate from what the doctor termed a brain seizure. It is still good to have another answer. So the vaso vagal is not related to celiac disease? I am just happy to be getting answers. Thank you for your response!
  8. Thank you all so much for responding. I was going to say that none of you would know how much that meant to me, but then again, if someone stumbled across all of this as I have, then you would! I don't know proper ettiquette for these boards, so feel free to correct me. I am including questions and responses to the whole thread. Kaiti, thank you for the list of tests to request from the doctor. I've only seen him once so far, so I am not really sure how he will take my request, but I will be assertive! Laura, why was the testing not a good experience? Is it not just bloodwork? At this point, I am thinking that I will undergo almost anything. I have been grieving for my previous life for the past 7 years - the pre- chronic "D" era. I met and married my husband after all of this started so he is amazed when we talk about things I used to do in terms of being active. The first website I came across seemed like I could just do this on my own without going to the doctor, but then I started thinking about my daughter. If I do have celiac disease, I would like to know so that I could do something about my daughter? At this point, I don't know what. She doesn't have any symptoms - she's 4 - but neither did I. I just don't want her to end up like this. Richard, I did try a prescription of Paxil to help with the anxiety, but discontinued its use after about 5 months. I finally decided that I wanted to treat the problem. My anxiety was a secondary symptom to the other problem. I have always been high strung, but not anxious about leaving the house. And Deb, thanks for the additional support through email! I might take you up on that. I thought of one more thing after my original post that I hadn't thought of before. I don't know if any of you are into alternative medicine but I had gone to a kinesiology specialist. I won't go into the process because I realize how much like quackery it sounds. This was a year ago. After the testing, she told me that my body was full of toxins as a result of a digestion problem. She is not a medical specialist so she didn't mention any condition in particular. The interesting thing, besides saying that about toxins and digestion, was that when she went to plan my diet, she said that I could not have anything with wheat, etc. because my body doesn't like it! And I didn't tell her any of my symptoms before doing this. I am excited that I might finally have some answers. I keep thinking - how hard can changing my eating habits be, as opposed to what I am already going through? Then I realize how much processed food I eat! I am not even going to think about vacations and restaurants at this point. Thank you all so much!
  9. Hello All, I have been lurking for a few days now, but since I am more confused than ever, I thought I would make that big leap. I was looking for a comprehensive list of symptoms but I am reading that they are so vast depending on the individual. I hope none of you mind my adding my own story to this mix in the hopes that someone will say, "Hey, I did that!" This is a big jumble because I never paid attention to when anything happened. I'll start with nerve damage in both of my feet. I've had surgery on one but not the other. I have no idea if this is in anyway related and as such, I feel silly bringing it up. After the surgery, the doctor stated that he didn't know how I was walking, other than building up a high pain tolerance, because I have almost no fat pads on my feet. I do know that my grandmother had the same problem so maybe this has nothing to do with it. I don't know when this started - years back - sometimes when I stand up, I have to "wait it out." I feel like I am going to collapse. It is a strange feeling and I don't know how to describe it other than to say that I feel like I am going to collapse. Up until I had my daughter, I would refuse to sit down. It passes within a few minutes, but it is a dizzy, incredibly weak feeling. I also have severe joint pain during these episodes and also times without the feeling I am going to collapse. About 10 years ago, I went to a doctor who said I was having "brain seizures" and I needed to relax. My jaw would lock and I would start trembling. People wouldn't notice unless they were talking to me. I would try to talk back - and actually thought I was pulling it off quite well - but then I was told that I was mixing up my words. For instance, I could put a sentence together but instead of saying "car," I would say something like "butterfly." As I would start coming out of it, I would have these intense cravings for Whole Milk and/or Liver. The doctor didn't even run any tests on me. He just said they were brain seizures and my body's way of telling me that if I didn't learn to relax, it would do it for me. By the way, I am extemely anxious, perfectionist, and all of that. In other words, I stay stressed out. Then I had to have my gall bladder removed. Three days after the surgery - and this is so embarrassing to say - I started the "chronic diarrhea" phase of my life. It has completely taken over my life. I had just started my final semester of my Bachelor's degree with one week into the semester when I had to have emergency surgery. I had just moved. In other words, I was stressed more than normal. I am writing all of this because I have finally gotten the nerve to go to the gastro doctor. I didn't know where else to go. I have been dreading any type of exams, as well as the colonoscopy, but finally decided that my days have got to be planned around husband and daughter - and not the bathrooms along the route! The doctor tells me after a 10 minute talk, that he suspects I have either Crohn's or Ulcerative Colitis - both of which I researched to discover have been misdiagnoses of celiac disease. I only have one symptom - the major bathroom problem - for both of these conditions. But in looking at some of the lists for celiac disease, I have more than a couple. I should also say that I am not losing weight. I have never been a tiny person, but after the birth of my daughter, I gained something like 60 pounds. I only gained 15 during pregnancy. The doctor said that it was just taking my hormones longer to catch up with the birth. I guess at this point I am venting? I am just ready to move forward with my life. I put so much hope in going to this doctor thinking that he could "fix" me, and now he is suspecting me of conditions that I don't even two symptoms for. Can someone help me? I am supposed to go back to him in two weeks, at which point he will schedule a colonoscopy. I have already done the labwork so I will get the results then. When I first found this site, I was going to just go gluten-free and see if that improved anything. Then I read here that I shouldn't do this until testing is completed. Could someone offer any sage advice? I would appreciate any suggestions. And I apologize for such a long post. Thank you!