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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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About banjos

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  1. hello! i am no expert but i believe you can have celiac with the one positive test. i had the same mildly positive blood test. my endoscopy showed no signs of celiac according to my dr's. my dr is saying that i don't have celiac but IBS and that i'm lactose intolerant. which is bizarre because i have no problems with dairy. BUT i have seen all of my seemingly unrelated symptoms disappear once going gluten free. since being gluten free i've accidentally consumed it twice and had awful reactions. that's enough proof for me! i believe that they consider the endoscopy/biopsy the "gold standard" for diagnosing celiac. but you may have negative biopsy results and they may not technically diagnose you as being celiac but it's possible that you should not be consuming gluten.
  2. i just want to second the idea that the endoscopy is not the final word. i had a mildly positive blood test and a negative endoscopy yet it is CLEAR that i should not consume gluten. i am on my third month of being gluten free and have consumed gluten twice and have gotten so very ill. my dr. doesn't considered me celiac (i got the IBS diagnosis with a dairy intolerance - even though dairy does not bother me!) but i know for a fact that gluten is not my friend. good luck!
  3. hi. i don't have much to add in terms of advice but i wanted to say that one of my symptoms from consuming gluten was/is anxiety (i was taking xanax prior to stopping gluten and was told to start lexapro but never did). i'm starting my 3rd month of being gluten free and while it has taken some time to see a resolve of my anxiety (stomach issues, migraines, skin problems were the first to go) i feel like a different person. and when i am glutened - which has been twice - the anxiety comes back. it's almost like someone has given me a weird drug. it's like this awful buzzing feeling with brain fog. it starts within like 6-8 hours of consuming and it takes a few days to feel "normal" again. i find it so interesting that anxiety and the like can be a symptom of consuming gluten. i've had anxiety for years and would have never put two and two together. so happy to have found relief and i hope you do as well.
  4. hi there. i had the blood test panel done and it came back mildly positive but my endoscopy was negative. i have responded so well to being gluten free and have been glutened twice since going gluten-free and it is awful. my symptoms last about three days as well. so basically for me i am not diagnosed as having celiac but i know that i simply cannot eat any gluten at all. i basically feel like i went through all of the testing for them to say that i don't have the disease but yet here i am thriving on being gluten free (and getting violently ill when i have eaten gluten) so that is enough for me to never eat it again. in hindsight, i personally don't think i could handle going back on gluten just to get the testing done. but that is definitely something you have to decide for yourself. i would maybe opt for the genetic testing if possible instead of going through the trouble of eating gluten again for months on end. good luck!
  5. hello! I was given the blood panel for celiac and one of the test came back "mildly positive" and had an endoscopy and it came back negative (everything looked fine). but i wanted to post an update on myself since going off of gluten thinking maybe it could help someone else. before having the blood test i had all of these seemingly unrelated symptoms. once i had the endoscopy i immediately went off gluten (my dr. told me to try gluten free for 3 months and see how i do) after about a month of being strictly gluten free (and seeing a clear up of almost all of my symptoms) i decided to eat four bites (FOUR BITES) of my sons cereal. i thought "oh gee, technically i wasn't diagnosed with celiac so what's a few bites of cereal gonna do..." oh wow was i wrong! i got so sick for three days. it was so awful. i new instantly that i should never be eating gluten again. and then the other night i accidentally ate something that i thought was gluten-free but it turns out it was not - same thing - so very violently ill. so i know absolutely that the first time was not a fluke. i am literally in awe that now when i ingest gluten that it is this bad. before when i was consuming gluten on daily basis with no care in the world, it was never like this. so i guess i just wanted to say that even if your dr. says that you don't have celiac but you respond to the diet - please listen to your body!
  6. thanks everyone. i guess i don't *need* a solid diagnosis. the only thing that concerns me is that celiac is genetic and i do have a son. although he eats a gluten full diet and has no problems that would warrant concern. part of me wanted them to say yes, it's positive because then it makes it a little more real. but i am absolutely going to remain gluten-free for 3 months and see how i feel at the end of it. the probably negative was based on the two samples they took from my small intestine. i haven't actually seen the report or even talked to my dr yet - the nurse (who didn't really seem to know much about it and just read the results off of a sheet of paper) let me know. so we will see what my dr says, i'm really curious as to why she is recommending no gluten or dairy if the test was negative? also, with the blood tests - is it possible to have a complete zero of gluten antibodies? or does everyone have a little? i'm just wondering because my test was mild positive and maybe that's not that big of a deal?
  7. just spoke to my dr's nurse. and i have to say i'm a little frustrated. they said that based on my endoscopy i am probably negative for celiac (which is fine if i completely believed them). she said that i basically have ibs and shouldn't eat gluten OR dairy. obviously, i need to talk to my dr. i also asked for them to send me a the diagnostic report. i'm just feeling so confused! i feel like i've been thrown into this - i was tested on a whim from my dr and then to get a mild positive blood test and have the visual scalloping - i would have never thought that i was gluten intolerant before getting the testing done. but now that i am not eating gluten i am already seeing a difference in symptoms. i feel like i didn't realize how bad i felt until now. so this kind of feels like one big mind game - like is something wrong with me for real or am i just imagining things? also, i asked how many samples they took from the endoscopy and she said two. from what i've read that doesn't seem like enough to definitively diagnose positive or negative. i'm not going back on gluten and will be going off dairy as well (although i'm not exactly sure why yet - at least with the dairy). but i feel like after reading what so many others have gone through trying to get a proper diagnosis that i'm dealing with dr's that aren't as up to speed or educated on diagnosing this. like maybe another dr. might interpret my results differently. and that's another thing - aside from the gene testing it seems as though diagnosis is left up to the dr's to interpretation - like there is this huge grey area in diagnosing.
  8. i'm curious if it is possible to have scalloping yet the biopsy be completely normal? has anyone had that experience?
  9. just had my endoscopy earlier today. wasn't as bad as i thought it would be. i'm still a little loopy and tired but i feel ok. i got the initial results that say: 1. irregular z line 2 mild scalloping of the mucosal folds in the second portion of the duodenum - biopsied they said i need to await pathology results and wouldn't confirm or deny celiac. so it looks like tho that scalloping is an indication of celiac?
  10. thank you all for your replies. it's making more sense now. i've decided to go ahead and get the biopsy. i have it scheduled for next week. i also think that regardless of the results i will be going gluten free.
  11. thanks for your reply! i understand that you can't have the endo once gluten free or rather you would have to go back to eating gluten to get the correct results from the endo. but what i mean is that i would go gluten free to see how i feel - if symptoms subside then i would remain on the gluten free diet. but you are pretty much saying that even the weak positive test indicates that i should be on a gluten free diet?
  12. the only time i was ever off gluten was for a week when i did this clean eating cleanse (i basically ate protein, veggies, fruit) no dairy no bread. i do actually remember feeling kinda crappy for the first two days but then felt amazing the rest of the week. (ha! maybe that should be a good indicator!) but then went back to my normal eating after that. i would say that was like the first week in march.
  13. oh and i just talked to my dr.'s nurse and she said the test that was weak positive was the Deamidated Gliadin IgA. i have a 21 and 19 or less is considered negative. is this a pretty sensitive test?
  14. thank you for the replies! my thinking is that regardless of the endoscope i will go gluten free for 3 months and see how i do. i feel like i've read so many experiences where people have had the endoscope and it turns out negative yet they go gluten free and feel so much better. i almost feel like the weak positive blood test and my symptoms are enough to warrant going gluten-free yet maybe if i get negative endoscope it would deter me from going gluten-free (i hope that makes sense!) i actually have a best friend who is gluten intolerant and has been telling me for a while that she thinks something is up with me and gluten. she and my dr. both have said how you feel off gluten as opposed to on is probably the biggest indicator of what you should do. also, i feel like not all of my symptoms are exactly what you would see on the celiac list of symptoms. so i think it's been hard for me to actually admit that maybe this is what's going on. and maybe i think i feel better than i actually do? like once i go gluten-free i will actually feel good and realize how bad i am feeling now. kind of like how you get used to feeling bad?
  15. hi everyone. i am new to all of this and looking for a little advice. i was tested for celiac, my dr. said it was a three panel test and two were negative but one was mildly positive. she said it was a 21 and negative is 19 and below. i've been searching the forum for others experiences with having tests come back as mildly positive or weakly positive. most seem to know the names of the tests (igg iga etc) but i didn't think to ask her. so she said that while she doesn't think i have celiac disease she wants me to get the biopsy done because of my very consistent low vitamin d levels (i'm on and off of very high doses to keep it up) so it seems a little extreme to go through the biopsy for a weak positive. i'd be interested to hear other more experienced peoples opinions on if i should bother with the biopsy or maybe just try going gluten free for a little while? i'm pretty confused. thanks in advance!