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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 NeedAVacation2

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  1. Hi again. I'm back with my younger daughter's blood test results. (I started a post a few weeks ago about our older daughter who had very positive blood test results but a negative biopsy and negative results for the DQ2 & DQ8 genes). We decided to go ahead and ask the pediatrician to do a Celiac panel since our house is quickly becoming gluten-free due to my husband also finally accepting that he has a gluten problem. Also, I read Wheat Belly and it scared the daylights out of me. Anyway, this daughter seems asymptomatic except that she's never had as much energy as it seems she should, occasional headaches, PMS, and her iron level is now just a tad below normal. We got the test results today and here's how they look: Celiac Disease Ab Evaluation: tTg Ab, IgA: 22.4 (<20 negative; 20-25 Equivocal) Gliadin Peptide Ab, IgG: 10.3 (<20 Negative) Gliadin Peptide Ab, IgA: 28.3 (<20 Negative, 20-25 Equivocal, >25 Positive). So even after all the reading I've done, I'm still confused about the Gliadin Peptide tests - if these are the old ones that really aren't accurate, or if they are useful. Can anyone tell me?? Any thoughts on the above test results? I'm waiting for the pediatrician to call me back to discuss whether or not this daughter should see a pediatric GI or an adult GI since she'll be 18 in a few months. I'm actually feeling conflicted about whether or not she even needs to see a GI except that she'll be going away to college next year and will probably need some kind of doctor's orders for gluten-free dining. (Dh is worried though that giving her a Celiac diagnosis when she might not have it will come back to haunt her when she tries to get life insurance or disability insurance. I guess that's a question for another post.) The GI older daughter saw is the one who said not to bother having siblings tested unless they were experiencing obvious symptoms and who, after the negative biopsy and gene tests, told us that she probably does not have Celiac Disease and so not to worry about cross-contamination anymore, though she must be gluten sensitive. I'm actually not certain that we trust him now, though he's a nice enough guy. Again, after all the reading I've done, I know that it is possible to have gluten cause as many problems in a gluten sensitive person as it does in someone with Celiac Disease (minus the small intestine damage), so we feel the most important thing is to just go gluten-free if we know gluten is causing problems. So I'm floundering here. I guess my questions are: 1) can anyone help me interpret these blood test results? 2) any thoughts on a pediatic vs adult GI for an almost 18-yo? 3) do we just reject the endoscopy and genetic tests with this daughter and wing it? Thanks!
  2. The thyroid tests are the TSH and T4, correct? If so, her ped. tested those and both came back in the normal range, though on the low end of the normal scale. However, I have read that blood tests for thyroid are also frequently innacurate. The only other odd test result she had was for the Epstein-Barr Viurs Antibody Panel. The ped. didn't know what to make of it. I have to wonder if the GI doctor was just focusing more on the genetic test results. If he believes that all Celiacs must have one of those two genes, I can see why he might say she doesn't have Celiac. Maybe something was lost in communicating through a 3rd party....
  3. We picked up copies of her blood test results today. I find it rather confusing, but I'll type what's there. The tests originally done (when she had very recently still been consuming gluten and was still feeling quite ill)were "Celiac Disease Ab Evaluation": tTG Ab, IgA: 114 (>25 Positive); Gliadin Peptide Ab, IgG: 41.2 (>25 Positive); Gliadin Peptide Ab, IgA: 160.0 (>25 Positive). Also, her Hemoglobin was a bit below the low end of normal, where it's been for years despite taking iron supplements in addition to a multivitamin. Next came the endoscopy, which we were told was negative. However, at the time of the endoscopy, he gave us a few photos and pointed to where he thought he saw some very mild scalloping. I have no idea how many samples he took, etc. Results of the tests which were just done - after approximately 3 months on a gluten-free diet ("Celiac Disease Comprehensive"): Deamidated Gliadin Abs, IgA: 4 (Negative); Deamidated Gliadin Abs, IgG: 3 (Negative); t-Transglutaminase (tTG)IgA: <2 (Negative): t-Transglutaminase (tTG)IgG: 6 (Weak Positive 6 - 9); Endomysial Antibody IgA Immunoglobulin A, Qn, Serum: 192 (Negative). Genetic testing results for DQ2 and DQ8: Negative. The GI's nurse said the GI said that based on these recent results, she does not have Celiac Disease but that it would be prudent to stay on a gluten-free diet without worrying about cross-contamination. We are assuming, however, that unless there was some serious error in the first blood tests, that the dramatic drop in numbers means her strict compliance with a gluten-free diet is working. Does that seem to be a correct assumption? In any case, based on the dramatic improvement in her health and her desire to stay healthy, she has decided she will continue to avoid as much cross-contamination as possible and to remain gluten-free. She is interested in finding a GI who is more of a Celiac specialist in the future if that is possible. Thanks again for any insight into these test results.
  4. Thanks for all the quick responses. She is going to call to try to get copies of her test results so she can compare and have them for her medical records. We were not given numbers, but I got the impression from the pediatrician that the first blood test came back solidly above normal. I was told there was no question. This most recent one was "just slightly above normal" according to the nurse, so I have the impression that the number decreased from the first time, but I could be wrong. The nurse called back this afternoon to say the doctor came in to the office after all and just said for her to continue on a gluten-free diet "for now", not to worry about cross-contamination, and that he doesn't feel she has Celiac based on these test results. On her first visit, this doctor also said that family members don't need to be tested unless they are having symptoms. Regarding the number of samples during the endoscopy, I'm not sure how many he took. (Also, it is my husband's family, not mine, that has so many members with problems with gluten. My husband did ask his doctor about being tested even though he has had a very low gluten intake for months due to a low-carb diet. His doctor did the test anyway and told dh that it didn't matter that he hadn't been consuming gluten - that if he had Celiac it would come back positive regardless. Not a surprise that the results were negative.) Unless it was just a coincidence, it seems pretty clear that the gluten-free diet led to a huge improvement in dd's health. She's only had mild stomach cramps the day after eating out a few times plus one big headache, and no reaction after eating at other restaurants that are known in local gluten-free circles as being safe. Her headaches, dizziness, joint pain, brain-fog and excema have pretty much gone away. Her color is good now. Her fingernails had been developing pot marks and they are growing in normal. After a couple of weeks she went from wanting to sleep all the time and barely having the energy to walk up stairs to being strong enough to work a full-time, demanding internship plus extras plus strenous walking and exercise. She was able to live in an apartment over the summer and cooked for herself most of the time, though her roommates (random assignment) were not particularly careful about cross-contamination and cleaning. She will be in an apartment this year and will cook for herself and also with roommates she knows well and who will be more careful, so it won't be difficult to remain gluten-free. I guess it's just frustrating to be told in the beginning, "she definately has Celiac Disease and you're lucky to get such a quick diagnosis" to having this mix of test results and now being told she doesn't have it after all. I'm also afraid of the long-term consequences if she starts questioning the need to be so strictly gluten-free and giving in to all the gluten temptations around her. The other worry is that if it's not the gluten, then what is/was it?? Thanks again for your responses.
  5. Hello. This is my first post though I've read a few before registering. We are baffled by my daughter's test results and getting quite frustrated. She's 19, and after getting very ill last semester, her doctor ran a bunch of tests. The only one that came back positive was for Celiac. I don't have the numbers, but apparently it was convincingly high (blood test). She was sent to a gastroenterologist who conducted a biopsy almost immediately due to her impending departure for a summer internship. Results were negative. She had started reducing gluten from her diet by that time but had only been gluten free for less than a week before the biopsy. She improved greatly and rapidly on a gluten free diet with only a few mild flare-ups after dining at restaurants (even though she did her best to avoid cross-contamination). GI wanted to see her again at the end of summer before she left again for college. He said he wanted to run the celiac panel again and also do the genetic testing due to the negative biopsy. We just got the results. The test for the genes was negative, but the tTG was "above normal". The nurse called us with the results and said the doctor said for her to continue on the gluten-free diet, but we are left with many questions. The nurse is going to ask the doctor a few questions for us (he is out of the office today) such as, "What exactly does this mean? What are the consequences of these results? Does she not need to worry about cross-contamination anymore?" I was taken off-guard and that's all I could think of at the time. We're left wondering now if she doesn't have Celiac after all. Is she just "gluten sensitive", and if so, what does that mean long-term? From the quick bit of research I did after that phone call, I'm left with the impression that even if gluten isn't causing damage to her small intestine, it can still wreak havoc on many other parts of her body/systems. However, much of what we read says that it doesn't. This is all so confusing! By the way, 3 or 4 of my husband's 6 siblings are on self-imposed 'low-gluten' diets. They all say they are "sensitive", but none have been tested. They continue to eat small amounts of obvious gluten and don't know or care about hidden sources or cross-contamination. They all insist they can have some gluten and be ok. One has long believed she is lactose intolerant. The child of that one has thyroid problems. Their father died of esophageal cancer and had been diagnosed with diverticulitis. Have any of you have any insight on this combination of test results, etc? Thanks so much in advance!