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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About Judithg

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  1. I just read this post about bacterial overgrowth and antibiotics. I had the same experience 3 times in the past year where my symptoms lessened or disappeared while on antibiotics (of course, I was not eating gluten before, during, or after the antibiotics--bad GI symptoms had developed despite my best efforts at avoiding gluten over the past few years). My GI doc has not been able to explain it. My alternative doc believes I have had an ongoing problem with bacterial overgrowth which has contributed to my various symptoms.
  2. I had pretty good luck with an elimination diet that worked as follows: Cut out all of the common allergens (wheat/gluten, dairy, eggs, soy, corn, peanuts, shellfish, chocolate). I'd probably cut out strawberries and tomatoes as well, because they're fairly common. Cut out any food that you normally eat more than twice a week. This usually means finding new foods to eat. Stick with this diet for at least 2 weeks to make sure you get any allergens completely out of your system. (I found that I felt really good when I was in this phase--none of my usual symptoms.) The particular diet I followed also recommended only eating cooked vegetables and fruits. Then add in foods one at a time, eat a lot of the new food for 2 days, and see what happens. Make sure you test foods individually. If you have a reaction to something, you have to wait 4-7 days before you add in another food (to clear the allergen out of your system). This takes some time, but I was able to identify my main problem foods within about 3 months. I've also read about a book that seems like it would be helpful in identifying food allergies. I haven't read it yet, but it might be worth a look-see: "The Food Allergy Survival Guide" at this website: http://www.food-allergy.org/books.html Hope this is helpful
  3. I've had a lot of problems related to bacterial overgrowth. In fact, I went on a regimen of antibiotics (Cipro) and probiotics for a week, followed by daily use of probiotics. This seems to have helped a lot. At the very least, take the probiotics--can't hurt.
  4. Okay, I had blood tests for antibodies and small bowel biopsies done 8 years ago before I was gluten-free and they were negative. Recently I had the tests done again--still negative. But I was gluten-free at the time, so I'm not sure they were accurate. Now I've had HLA tests done, which I believe detect the gene for Celiac. Those were negative. So does this absolutely mean that I am not Celiac? And since I still know that I am gluten sensitive, does that mean I just have an intolerance? Will it develop into celiac disease? Or is that impossible since the HLA tests were negative? I find that doctors are not good at explaining any of this stuff, and I'm so confused. And I'm still sick much of the time. The doctors now just want to say it's IBS, but I feel like IBS is a symptom, not a diagnosis. I'm considering the Enterolab tests, but I wondered if it's worth it based on my previous test results. Any advice would be appreciated!! Thanks, Judith
  5. Firmly Gf With Continuing Symptoms

    Terri, I thought Splenda potentially had gluten in it. Is it for sure gluten-free? Thanks, Judith
  6. Hi, I recently got back blood tests, and my cholesterol and triglycerides are high. They've been high off and on since my early twenties. Last year, I finally got cholesterol down to a total of 179. Now it's up to 241 again, my triglycerides are way up, and my fasting glucose is a bit high as well. The doctor thinks it's strange that I continue to get high readings over time, especially since I currently eat pretty well. Obviously I don't eat a lot of pastries and such, and because of my IBS symptoms, I tend to be careful about red meat, dairy, fat, and other triggers. I mentioned this on an IBS board, and a couple of people said that if you have an autoimmune disorder, including celiac disease, you can get false readings of blood lipids. Anyone here know anything about that? Thanks!
  7. Thanks for all the interesting responses! I can see that several of you have had similar experiences. I think I may be testing negative because I was gluten-free at the time of testing--or, maybe I haven't developed full-blown celiac disease as yet but will if I'm not gluten-free. Like Isabellamac, when I didn't get a celiac disease diagnosis years ago, I felt like I could cheat once in awhile and it wouldn't kill me. I know people who have mild allergies to certain foods and they can eat them once in awhile without getting really sick. So I figured I could do the same. In the past 6 years, however, I kept getting worse and worse digestive problems. If I am more careful to be gluten-free, they seem to get better (though not immediately--sometimes it takes a few weeks or so). I just went through a horrible year of stomach problems with the doctors thinking it was IBS, IBD, Crohn's, cancer, stress, etc. I tried being truly gluten-free, but I kept having digestive problems. However, I think I was eating some stuff that I didn't realize was not gluten-free, including some medications. Plus, it seems that it can take time to heal once you're completely gluten-free. I had a colonoscopy a few weeks ago, and I determined that I was going to be totally gluten-free from that point forward (just seemed like a good starting point, especially since it showed no disease). I have been super careful. Then on Friday, my husband and I went to a restaurant--first time in quite a while. I asked the waiter about every single thing. I sent him to ask the chef questions, and he told me the spring rolls were gluten-free (rice wraps, rice noodles; fresh veggies; no soy sauce). He brought them to me, and I started eating. About halfway through the plate, he swooped in, took the plate and said, "Sorry, I double checked, and the chef said the noodles have wheat in them. Good thing I double checked." I was livid! "Good thing" indeed! I hoped that it was a small enough amount not to cause a major problem, but by the middle of the night on Saturday, I had horrible gut pains and by Monday I was really sick. This is the first time I've seen this kind of clear action/reaction. Now I feel like I have to start all over again. Anyway, I'm going to stick with gluten-free and skip re-testing. I don't want to eat gluten for 3 months just to get an accurate blood test! One thing that confuses me still: if someone is gluten intolerant and they eat gluten, will they always eventually developed celiac disease? Or can gluten intolerance exist as its own problem separate from celiac disease?
  8. Hi, I'm fairly new here, and I continue to have confusion about my diagnosis (I posted some questions about this on the pre-diagnosis and testing page). I have tried to be gluten-free for years after being tested in routine allergy testing as allergic to gluten. At that time I had the blood tests and endoscopy with biopsy--all were negative for celiac. Blood testing has improved in recent years, so my doctor had me get tested again recently. But he didn't have me reintroduce gluten before the test--he said it wasn't necessary. Now I'm not sure that's right. I don't want to do any more tests. They're expensive and frustrating. I believe I feel better when I'm gluten-free, although I have had a year of not being well at all. However, I am now beginning to identify a bunch of products that I thought were safe that may not be after all. So that could be the problem. I'm now trying to be completely gluten-free to see if it makes a difference. I'm curious if there are others in this forum who have never received a definitive diagnosis, and are maintaining a gluten-free lifestyle anyway. Is there any point to pushing the testing issue to get a solid diagnosis? I think I have always felt that if I were just gluten intolerant, I would at least be able to get away with the occasional NGF food, but that if I knew for sure I had celiac disease, I'd be more motivated to stay completely gluten-free. Does this make any sense? Thanks! Judith
  9. I think it's easy to end up with constipation when you go gluten-free--unless you make sure you're still getting plenty of soluble fiber in the form of rice, gluten-free pasta, and other gluten-free products. All my friends who have gone on the Atkins diet, for example, have ended up with constipation, because they're not eating sufficient grains or soluble fiber. Same thing can happen when you're gluten-free. Someone mentioned the Tinkyada pasta, and it is fabulous. Lots of other options too. BTW, I went to an Italian restaurant with friends recently, and there was not one single gluten-free item on the menu. I just ordered tea. The owner of the restaurant was distressed about this and came over and asked me if the reason I wasn't eating might possibly be due to gluten intolerance. I couldn't believe it!! She had Tinkyada pasta just for this situation. I was amazed!
  10. Karen! Wow! I take a lot of Gas-X Softgels. I read on a list of gluten-free products that the chewables were not gluten-free but the Softgels are. Any chance that the Softgels are okay?? BTW, the list of gluten-free products I was using is from http://forums.delphiforums.com/celiac/ Does anyone know of another simethicone product out there that is gluten-free? I know sometimes the Immodium anti-gas product is helpful, and supposedly gluten-free, but I don't like to take it unless I have really bad diarrhea. Meanwhile, I've found that fennel tea is helpful for bloating and gas, but not always as convenient as popping a pill! Thanks for the heads up on this. Judith
  11. Yep, it seems that my doc didn't quite do this right. The day that he gave me the order for the tests, he said just to go ahead and have them done that day. I knew I hadn't had any gluten for quite some time, but he said it wouldn't matter. And the two tests were fairly expensive, even after my insurance kicked in their portion. This is so frustrating! I guess I either have to have the tests done again, or I just have to go forward not knowing whether I have celiac disease or not.
  12. Hi, I'm new to this board, but not completely new to living gluten-free. Several years ago I tested positive for gluten intolerance during some routine allergy testing. However, when I was tested for celiac disease (blood tests and endoscopy), the results were negative. I went on a gluten-free diet anyway, because I felt better without gluten. But because I wasn't celiac, I wasn't always careful. Whenever I would cheat a little bit, I didn't feel that bad. But if I started eating wheat everyday, I would get sick again (digestive problems, headaches, fatigue). So I was fairly careful but not strict. For the past year, I've had terrible digestive problems. When they started I realized that a couple of foods I was eating regularly had hidden gluten in them. I tried to be stricter with my diet, and I would get better than get worse again. Sometimes getting worse was directly traceable to eating some hidden gluten. Since there are more accurate tests now than there were when I was first tested for celiac, the doctor tested me again. However, he told me I didn't need to do a gluten challenge. Again I tested negative for celiac. Now I'm wondering if the fact that I was essentially gluten-free at the time of the test may have affected the results. I suppose I should just be as strict as possible about gluten and not worry about diagnosis, but I really would like some closure on the issue. So how accurate can the test be if you're gluten-free at the time? Do people test negative sometimes for years than eventually test positive? Should I just give up on finding the answer and maintain a strict gluten-free diet? Sorry this is long--I appreciate your feedback!!