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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 PLGW2012

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  1. Wow, thanks so much for the replies. This is so frustrating, because I start to feel like we have it down, then we learn about something new, like cross-contamination! We've been careful with peanut butter and jelly jars, but the pots and pans never occurred to me. I did stop using regular flour, because I read that it stays in the air, and now the whole family eats almond flour and coconut flour baked goods instead. But the other kids still eat regular bread and tortillas. The rest of us have all tested negative for celiac, but I that either my husband or I must have it because it's genetic. I'm glad you all replied, because now I feel more comfortable insisting on follow up tests. I assume if she's not improving, we need to be more careful, right? Or is there something else that would need to be done? Thank you all so much!
  2. About nine months ago my nine year old was diagnosed with Celiac disease during a routine blood test. She has no symptoms, except for scalp psoriasis which may or may not be related, according to her doctor. When she was diagnosed, her blood work was off the charts with every marker for celiac, according to the nurse (not sure if that's true). Her upper endoscopy showed stage 3-4 damage - the doctor said he was shocked for all of these results in a nine year old with no symptoms. My question is this: her doctor is not interested in doing any follow up tests, but I'm concerned - how do I know if she's improving? Everyone else in the family eats gluten. Is the risk of cross-contamination high? When I asked the doctor (celiac specialist) he said "don't go overboard" with trying to keep gluten away from her just keep her from eating it. Should I push the dr to retest and see if she's getting better, since we don't have symptoms as indicators? Thanks, sorry for all of the questions. Here are the original labs: IgA Gliadin = 63.1 IgA TTG = GREATER THAN 100 EDIT: I forgot to mention the IgG Gliadin = 53.7 The reference value says: Less than 20: Negative 20 to 30: Weak Positive Greater than 30: Strong Positive
  3. My 8-year-old was diagnosed last month and I just want to recommend the book "Eating Gluten-Free with Emily". My daughter loves it and it has really helped me explain what's going on. It inspired her to be a "gluten detective", which has been very helpful when friends are offering snacks or my clueless husband offers something she can't eat.
  4. Today was my 8-year-old's biopsy. The doctor brought out pics that they took during the endoscopy and showed me that her upper intestine was "flat" with "blunted villi", redness, and swelling. One dr already told ,e that with the positive TTG greater than 100, the positive titer (1:160) ema, the positive IgA and IgG, he is 100% certain she has celiac disease...but the doctor who did the endoscopy told me to wait for the biopsy results before we go gluten free. After talking to many of you I feel like this doctor is not giving good advice and we should definitely cut out gluten immediately. But I am concerned about the redness and swelling. Is that normal with blunted villi from celiac?
  5. Thanks for all of the info. I can already tell this is going to be a challenge. Last night at dinner at a restaurant (after I'd researched what she could eat) my husband handed her a breaded mozarella stick and she ate it before I could stop her. My husband and friends were saying, "Oh, it's  a process, we'll get used to it."   But after the dr told me to look at it like it was poisoning her, I don't think it should be a process, I think we should just get rid of it all now and never let her have it again! I think the hardest part will be teaching her and the rest of the family to watch for gluten.
  6.   Thanks for the suggestions, I feel more confident now about starting to go gluten free immediately after the procedure.   I'm glad you mentioned Eosinophilic Esophagitus because they are doing some kind of procedure that I am still reading about at the same time of the endoscopy Tuesday to check for that. The doctor keeps referring to it as EoE and says that it's really important to check for it, but he hasn't gotten back to me about why it's important. So I'm glad to hear that it's a legitimate thing to be concerned about and they aren't doing unecessary testing.   I also didn't know that the endoscopy could tell us how serious the damage is. I thought it was more just to confirm the celiac diagnosis. All of you on this forum are much more informative than the GI doctor, who takes days to respond to general questions!
  7. Wow, thanks so much nvsmom. Every time I read this forum I learn something new. I never thought to check vitamins! And thanks for explaining all of's crazy that a kid with those blood tests could be mostly without symptoms!   That is very valuable input. I think we will do a "last oreos" and "last pizza" and that's it. I was getting really confused, but I think going gluten light until the biopsy is a good plan, and then gluten free right after the biopsy.
  8. My 8-year-old just had blood tests and the doctor told us that based on her blood work he wants her to limit her gluten consumption to 1 piece of bread per day before her endoscopy Tuesday. I've read conflicting information. Most of what I read on says that she should eat the same diet she always has and then go gluten free right after the biopsy, but the doctor is saying to cut it down based on her blood test results.   I'm even getting conflicting information from the GI office - one nurse says to plan to go completely gluten free as soon as we are home from the biopsy, but another says she tells people to wait until they get the biopsy results just in case it's not celiac.   What do you all think?   These were her results (I don't know if this matters, but I thought I'd put them up anyway):   Immunoglobulin A:          74      Normal (Range 28-180)   Endomysial Abs, S (IgA):    High  Positive Titer 1:160 (What does this one mean? I don't even know what a positive titer is )   IgA TTG:      Greater than 100  (Greater than 30: Strong Positive)   IgA Gliadin: 63.1 Positive (Greater than 30: Strong Positive)   IgG Gliadin: 53.7 Positive (Greater than 30: Strong Positive)   Also, how do you recommend jumping in? Should I get rid of all of the gluten in the house? Should I let her have one last pizza, etc., before the biopsy? It's hard to let her eat anything with gluten in it now because I feel like it's poisoning her.   I've posted a bunch here in the past few days, and I'm so thankful for everyone's help.    
  9. Oh my gosh, gluten free soap? It looks like diet is only part of it then. She loves lip balm and Chapstick (I shouldn't have said "gloss", she's only 8 so it's not like she's wearing makeup. So I'm gathering that basically anything that could potentially get n her mouth could cause problems, right? Her dr is a self-proclaimed "celiac expert" but he only mentioned diet, not soap or anything else!
  10. Thanks so much for all of the info! I'm so glad I found this forum. I'm especially curious now to see if there are symptoms she is having that we haven't recognized that may become more obvious as we start avoiding gluten. Is celiac disease the same as gluten intolerance? I was mentioning to a friend that my daughter was diagnosed with celiac, and they said that one of their kids has a gluten allergy. I'm just curious if this are the same, or if there are differences.
  11. My 8-year-old daughter was just diagnosed with celiac disease, and I'm overwhelmed (which I'm sure is very common). How careful should I be? Do we need to keep food separate, use different utensils, avoid French fries that may have been contaminated in a fryer, etc? She doesn't really have symptoms, so I don't think it will be super obvious when we accidentally give her gluten. But is a basic diet good to start with, or do I need to start checking her lip gloss ingredients? It just kind of hit me last night - we web to Applebee's for 99 cent kids night, and there was nothing on the kid's menu that wasn't full of bread and/or breaded. It was like a kid's gluten free for all. I know I need to learn where it is safe to eat and where it isn't , but how careful do I need to be in other areas?
  12. OK, sorry, I have more test results!   Endomysial Abs, S (IgA) Positive Titer 1:160 (high)   and   Immunoglobulin A 74 (The range says 28-180, so I assume this one is OK).   My doctor is a little hard to get ahold of; does anyone else know what these mean? Do ALL of these tests measure gluten intolerance? And is gluten intolerance the same as celiac disease? Thanks!
  13. Thanks everyone! We are going through a local Children's Hospital. I will make sure I mention the 6-sample thing for the biopsy.   The allergy doctor was kind of excited about it, and kept saying, "Wow, we test for this all the time and we rarely get kids with results like this." He also said he would be stunned if she doesn't have Celiac. I'm glad he's so interested but it's not very exciting for us.   One thing that I am stressing about is that my daughter is asymptomatic, except for one thing - she has gotten terrible mouth sores for years. We haven't been able to figure it out, until I read on one of the posts on this forum that mouth sores could be a sign of celiac. Now I'm wondering if she's had this for years and how much damage has been done? Was I permanently injuring her everytime I fed her something with gluten in it?
  14. Sorry, one more question: Is there a strong likelihood that the biopsy will show that she doesn't have celiac? Or is the 100+ result a good indicator that she does have it?
  15. Thanks, I appreciate the info! Does it matter that the numbers are so high? Maybe they are not that high, but if greater than 30 is a strong positive, does that mean 60+ & 100+ indicate something serious? Also, is there other testing aside from the biopsy that I should request?