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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

Jules22

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  1. Got the results back--partial villous blunting-definitely celiac. Now we can move on.
  2. That makes sense--got to stop worrying and thinking about this. It will be what it will be.
  3. Thanks--I understand. I guess I have never been a very patient person--Lol!
  4. Does a biopsy coming in quick mean anything? My daughter's GI called today to say that the results are in and asked if she could come in tomorrow---sadly she is working right now and scheduled to work tomorrow and I didn't think I could make that decision for her! But of course I'm anxious to find out the results--and we weren't scheduled with the GI until next Friday! Also, I came across a video online by a Dr. David Johnson who was talking about celiac biopsy protocols and he said that in a group of people the only atrophy that is found is at the duodenal bulb. And that should always be a place to be biopsied--along with others. Looking at the sheet I was given after her procedure--it was noted that she had possible erythematous mucosa at the duodenal bulb but no biopsies were listed as taken. Other areas had the mucosa found and biopsies there were done. Several in other areas. Does this mean that her biopsy might not have been done correctly? This is such a frustrating diagnosis--and I just need to find out to move forward.
  5. Thanks for the responses raven and cyclinglady! I guess we just have to wait. Is it wrong that I want there to be no question that its celiac? She has had so many symptoms for awhile now--seemingly increasing--but I want there to be no question in her mind that she needs to be gluten-free--you know? For now we are working on eating gluten-free but I haven't really tackled the whole cross-contamination thing yet and looking into my freezer, fridge and pantry I have a decent amount of gluten that the rest of us will eat. Then I guess I'll decide how gluten-free the rest of us should be. On a side note--the gi ran a bunch of tests prior to the biopsy--I haven't seen the results--but they mentioned over the phone that her white blood cells were high--maybe due to celiac?
  6. So my type 1 daughter had her biopsy today and the gi afterwards noticed some redness/inflammation (gastritis?) but also saw the villi. I guess I was expecting that with her blood test result of her transglutinminase ttg iga of over 100 that she would definitely see some damage. Her symptoms seem to be ramping up as well. She took multiple biopsies in several locations and now we wait. Do you think that there is a chance that with a very positive blood test result she could have a negative biopsy? My daughter was saying that she would like the positive biopsy to know for sure and to make it easier to stick to being gluten free forever. This is really hard waiting
  7. Thanks raven and awol--I think she will feel much better hearing that these pains could be due to her celiac. I don't know about the Epsom salts-never asked-so I definitely will. I think further compounding it right now is that the doctor did not want her to take ibuprofen for 7 days before the procedure and not sure if Tylenol is allowed but she can't take it because it messes with the continuous glucose monitor that she wears. Only 4 more days. I will try to see if my primary can or will run a full celiac panel for me. Left him a message asking why he didn't test my immunoglobulin a and whether we should be running the full panel. I have encouraged my husband to test as well--he did just have a colonoscopy and endoscopy last fall--looking for other things but would they have been able to see celiac if there? He has bad acid reflux and they were just doing the colonoscopy since he turned 50. My other daughter-who has Hashimoto's-was genetically tested for celiac through Prometheus labs about 6 years ago due to our family history of autoimmune and she was having bad stomach issues--that came back negative. So I think (hope) she's good?
  8. It's so frustrating how they don't order all or the right tests and then if something comes back not right--just ignore it. With my daughter I knew something was off for some time but her blood tests -of course it was only a ttg iga and immunoglobulin a that were run-came back negative. But in looking at previous blood tests-she had a cbc run about a year ago that showed that her MCV was high and there was no mention of it. Makes me wonder if that along with a deficiency in her vitamin D levels can be attributed to celiac. On a side note--she has been experiencing lots of leg pain-to the point where she is sometimes in tears because they hurt so much! She had her endocrinologist appointment yesterday and mentioned that and he didn't think that this could be attributed to the celiac. Is that true? As I stated before she is having the biopsy this Tuesday but I think she is hoping that this is a symptom of the celiac so that it will resolve going gluten-free. Any thoughts?
  9. I started a topic a couple of weeks ago about my type 1 daughter with a ttg iga result of greater than 100 being suspected of having celiac. She saw the GI and has her biopsy scheduled for this coming Tuesday. Seems like there is no doubt that it will show celiac but we will know soon. I have started thinking about some of the symptoms that I have had and before my house goes gluten-free would like to test and make sure that I am not testing positive for celiac as well. My symptoms are always tired--easy to write off--been really constipated and bloated which is a relatively new phenomenon for me. Sometimes I get tingling in my legs/feet but that hasn't been too bothersome. My primary care doctor tested my ttg igg which was 3 (<6 is negative) and ttg iga was <1 (<or =4 positive) It doesn't look like he ran an immunoglobulin a test to verify that I am not immunoglobulin a deficient He ran a cbc that showed that my MCH was high (34) indicating that I could be deficient in B12 or folic acid--I rarely drink so I don't think that could have skewed the results. Could this be indicative of anything? My doctor just said all my labs are good. Do you think this rules out celiac for me or would you try to do further clarification/testing? Thanks!
  10. It looks like a value of <7 constitutes a real deficiency according to that article so I guess she's not? I should have gone to med school!
  11. Thanks for the responses- I'd be lying if I said I wasn't hoping for another possible explanation.
  12. My type 1 diabetic daughter has an appointment with the gastro next week but something I'm wrestling with in her test results her immunoglobulin A was 78- lower than range which is 80- up her transglutinminase TTG IGA was > 100 Is she immunoglobulin a deficient? If she is, doesn't the deficiency only rule out negative results and since she is very much positive then she is definitely headed toward a celiac diagnosis? Thanks!- I'm having a hard time waiting for this appointment
  13. My type 1 diabetic daughter has an appointment with the gastro next week but something I'm wrestling with in her test results her immunoglobulin A was 78- lower than range which is 80- up her transglutinminase TTG IGA was > 100 Is she immunoglobulin a deficient? If she is, doesn't the deficiency only rule out negative results and since she is very much positive then she is definitely headed toward a celiac diagnosis? Thanks!- I'm having a hard time waiting for this appointment
  14. Thank you! I'll check it out.