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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 ldslara

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  1. It hard to say how long I had it before diagnosis. About 6 months before I started having itchy eczema in my scalp that began to spread all over my body, my tongue was very sore and irritated, and my iron dropped very low. I also started to have hair fall out. I was reading an article about the low iron and it mentioned celiac disease as a possible cause, and I remembered my dad had been diagnosed shortly before he died, so I went and got the test. I've had low iron and tongue problems for years (doctor said it was geographic tongue) just during pregnancy though. Those symptoms are both more frequent during pregnancy, and they went away when I wasn't pregnant. So it's possible that I had problems before 6 months ago, but 6 months ago is when the symptoms got really bad. I've been careful on the diet, no cheating, but I still go out to eat and I have thought at times there was some cross contamination symptoms (my eczema flared up) My symptoms have improved, but the eczema isn't gone on my scalp, and I'm not sure if I'm still losing hair (but some has grown back too). Things are much better, but I hoped all my symptoms would be gone when my (TtG) IGA was normal. (My iron is up too, BTW, though it still on the low normal side.) I had my TSH checked to make sure it wasn't a Thyroid problem but that came back normal too.
  2. Hi! Hope someone can help me with my blood test results. I've been gluten free 4 months and I had my (tTG) IgA checked to see how it was going. 4 months ago it was 94 (above 10 was positive). Now it is 3 (0-3 is negative). Is it even possible that my score has gone down that much? I though it would have gone down by half at the most. The reason that I'm skeptical is that my son had a low positive at this lab before he was diagnosed (a 4, a weak positive according to their scale). Our pediatrician had it checked again at a different lab and the score came back 51 (which was a much higher positive. The doctor was shocked that there was such a difference between the two scores, and thought it really shouldn't be possible, but we kinda shrugged it off, and the kids are going to the other lab. My doctor wanted me to stick with lab for now so the results would be comparable, but I really am skeptical I could go down that much.
  3. Thanks for your replys. His EMA was negative, and his Iron level was fine, but I don't think they checked his Vitamin D. For now he's decided to go on a gluten free diet to see if his TTG go down to normal levels. He wants to avoid follow up endoscopies (GI said he would need to do them periodically to check for damage, probably every few years) and symptoms that his family members have, including any increased risk for other autoimmune disorders. If his TTG goes down we were thinking that would indicate celiac really was the problem, even without fining anything on the endoscopy. I haven't ever heard about an infection causing high TTGs as toworry mentions. If thats true I'd like to read some more information on that. I had understood that the high specificity of the TTG would make celiac very likely for him.I know that the specificity depends somewhat on the level too - his TTG was 51 with less than 20 being negative, which our GI said was a moderately high positive on the test. If his level goes down to normal while he is off gluten, and he then does a gluten trial and it rises again, would that indicate the problem was indeed celiac disease? I guess my question is, if it appears that his TTG levels do rise and fall in reaction to a gluten free diet, would it really be fine to stay on gluten even if they found nothing on the endoscopy? It seems to me just the high TTG is a risk, but maybe I'm not understanding what the TTG really represents.
  4. I have some questions on testing that I'm hoping someone can answer for me...Can a person have a positive TTG blood test for no reason? If a person has a positive TTG, and 1st degree relatives that have celiac disease, but has a negative biopsy and no apparent physical symptoms, is it really safe for him to remain on a gluten diet? Are just the elevated TTG antibodies a concern, even if no damage can be found? If the person did a gluten free trial, and his TTG returned to normal levels, would this indicate that he did indeed have celiac disease and should continue to avoid gluten? Thanks for any insight you can provide!
  5. My 14 year old daughter tested negative on the celiac disease blood test panel, but has always had skin rashes including Keratosis pilaris on her upper arms for several years. She also complains of aching joints. Since both her brothers and I tested positive on the celiac panel and have been dx with Celiac disease, and our home is now gluten-free, I convinced her to do a month long gluten free trial. After the month the Keratosis pilaris is almost completely gone, but her aching joints haven't changed much (sometimes she thinks its better, sometimes she's not sure). The plan was that she could go back on gluten this month, so that's what she did, mostly at school, to see if she had any reaction or if the rash returns. She hasn't really felt different so far, but is considering another trial, especially if her Keratosis pilaris returns. Any suggestions on how long the trial should be to see if it really helps with her joint pain? Also, are there any different testing she could do outside of the celiac panel that you'd recommend? She says if she had a positive test she'd be willing to go gluten free for good, but is reluctant just to do it just to get rid of the Keratosis pilaris, which looks bad, but isn't uncomfortable really. I worry that this is just the tip of the iceburg, and even if she still tests negative, getting off gluten now would be the best for her long term health. Thanks for your help!
  6. I can see how doing the endoscopy would be good to know a little more and provide a baseline, and has a small chance of being useful if his numbers don't go down on a gluten free diet, but the expense, discomfort, and uncertainty about the meaning of the result makes the whole procedure seems more trouble than its worth right now. Plus I just read a study that talked about the increased risk of other autoimmune disorders the longer the delay is between start of symptoms and start of a gluten free diet, and a negative biopsy result would provide more disincentive to begin the diet. He really needs to do the diet, having a gluten free diet now is much better than risking getting diabetes, MS, or Lupus down the road. If at some point his attitude changes, and we have a hard time getting him to stay on the diet, we can do a gluten challenge and he could get it then still if we felt like that would help him with compliance. That's the biggest reason I see to do it, better compliance. Hopefully he will find he feels better on the diet, and won't need extra incentive.
  7. So he had his Pediatric Gastroentronologist appt yesterday. The doctors said he felt the odds were 50/50 that they would find damage if they did do the endoscopy. He recommended we do one, becuase it would help us to be surer that a gluten free diet was really necessary. He is willing to dx him offically - write letters, or whatever is necessary, to get him any accomidations needed, without the endoscopy, but he says that since a gluten free diet is difficult, he feels like having more evidence could be important to him later, and he'll be more likely to cheat or return to a regular diet without it, and that if there is no damage found there is no reason for him to be on such a restrictive diet. He said people could have a high score like my Son's indefinetly, and don't necessarily ever develop "full blown" Celiac disease. I'm torn - I don't want to make life more difficult for my son, so of course I wish he didn't need to go gluten free. Even though he will be gluten free either way at home, school will be a challange, and he's going into Jr. High next year. So on one level it seems like an endoscopy, if it turned out negative, would be a good thing. We would continue to monitor him and watch for damage, and he wouldn't have to live on such a restrictive diet right now. So I see the logic in what the doctor is saying. On the other hand, even if we go ahead and do the endoscopy and no damage was found, as I described before, I would worry. As I said, they could miss something. Even if there was really no damage, I'm not convinced that small intestine damage is the best thing to rely on to know if Celiac disease isn't really hurting him - especially now, when he's going through puberty, and alot of critical changes are happening. And I'm not convinced that the endoscopy would reduce the chance that he would cheat or revert back to a gluten diet at some point anyway. It would be more evidence, but I think compliance probably relates more to symptoms than anyting else. With or without the endoscopy, I suspect he may cheat. And if he cheats and doesn't have symptom, he's more likely to continue. Symptoms might convince him to stop, but I'm not sure that having an endoscopy is really that convincing. From what I understand, if he really didn't feel any better on the diet after a year or so, and wanted to eat gluten again, he could then go on to do a gluten challenge for 6 months and test again, doing an endoscopy if his blood test was again positive. I'm leaning that way. It's seems like the most sensible course. And my son is on board with it. He's a great kid! I just wondered if anyone saw it more like the doctor does, that damage to the small intestine was what is really important and convincing, and no damage there would mean a gluten free diet was unnecessary, and it is better to do the endoscopy sooner rather than trying the gluten free diet first. The doctor said it was our decision, but he gave me the impression that having my son go gluten free now without the endoscopy would be over reacting and I would regret it. Does he have a point?
  8. In November both my 8 yr old son and I were diagnose by Gastroenterologists with Celiac disease based on TTG Iga blood tests of above 100, positive Endomysial AB IgA tests, family history (1st and 2nd degree relatives with dx Celiac), and moderate symptoms (no endoscopy). My 11 yr old son had a weak positive score on the (tTG) IgA of a 4 (the scale said Negative was 0-3, Weak Positive was 4-10, and Positive was above 10) and no symptoms besides mild environmental allergies. Our Ped GI ordered the full panel and some other blood work for him . Upon getting the full panel, through a different lab (the first lab lost some of his siblings tests for a time so we decided to go elsewhere) he received a stronger positive result of 51 on the Tissue Tras. AB, IgA (the scale was Less than 20 negative, 20-30 weakly positive, and above 30 Positive), negative Endomysial Ab Iga and negative Tissue Tran AB, IgG (score of 5 with above 20 being positive). My questions are as follows: Is an Endoscopy the best thing to do next? I believe my son's Ped GI will let us decide if we go forward with one or not, and would be willing to diagnose him based on his TTG IgA score and family history alone. A part of me would like to to the Endoscopy, just to make a stronger case for him gluten free, since I realize it will be difficult for him and he might question the diagnosis as he ages, but if no damage was found, would it really be wise to keep gluten in his diet with his blood work and our family history? I would be concern that either the doctor or lab missed something or that it was only a matter of time before his situation got worse. Is there any indication that a moderate score like his, without intestinal damage, would remain that way indenfinetely? Or is it certain to do damage eventually, even if he has none now? If he was your son, what would you do next? I guess I am having a hard time judging the pros/cons of going forward with the Endoscopy and if it is worth it. It is an expensive test to do and I'm not sure if it should change our course of action. For a little more background, my son seems to expect that he will have to adopt the gluten free diet soon, and is largely OK with that. Whatever happens, he will be eating largely gluten free since we are doing that at home and for family meals. Thanks in advance for any advice or insight you can provide.
  9. Hi! I started eating gluten free about a month ago and have some questions about avoiding gluten in processed foods. I know, avoiding processed food is a good idea in general, but when I do partake, is a food safe if it doesn't say "wheat" "barley" or "rye" in the ingredient list, or is it really more compicated than that? My understanding is that any product with wheat MUST include in on the ingredient list on the label or with a "contains wheat" or, if cross contamination is a concerned, a warning to the effecgt that it may contain traces of wheat. And though I understand that barley and rye don't have to be listed so clearly, they typically are. Does that all sound right? With this in mind, two products have me wondering in the past few weeks "Where's the gluten": I read that Resse's peanut butter cups are gluten free, but holiday items (like the trees) have gluten. I bought some of the trees for my kids stockings, and I don't see any wheat in the ingredients or warning that it is there. Is there really gluten there, and if so, where is it hiding on the label? It's bothering me that I can't identify it... I liked to eat oatmeal for breakfast, but I heard cross-contamination is a problem with most brands, so I've been planning on getting some that was certified gluten free. But I have noticed that there is no warning on regular containers of oatmeal, not even a statement saying it may contain traces of wheat. If cross-contamination is so common, how can they not say that on the label? When I mentioned this to my Gastroentronologist a couple week ago, he said that oatmeal was fine and I shoudn't worry about it at all. Is that right? Is croos contamination of oatmeal just a concern for people super sensitve to gluten? Or is my gastroentronologist misinformed?
  10. Nope, we didn't have the DGP. Maybe the pediatric gastroentronologist will order that next? Really, I think he'll want to do an endoscopy now with him. With my other son he said he was fine skipping it since his IGA was over 100, that we could dx based on the blood test alone if I preferred that. But wiith these results for my older son I think the only way to be sure is the endoscopy. The thing is, even if the endoscopy is negative, with my dad, me, and my younger son being diagnosed now, I am not sure I'll really feel comfortable with my older son staying on gluten if the biopsy is negative. Seems like even if they don't find damage now, there will be soon.I'm not crazy about waiting to see damage, even if he's essentially asymptomatic right now(the only thing that could be a syptom is he has mild eczema and skin rashes). Can anyone explain to me why the two IGA tests would be so different? I understand that the scales are different, but still his first was barely a weak positive, then a test just a few weeks later shows a score that is a moderatley high positive. I though the test was more standardized than that. It made me question my other kids who scored negative on the first IGA test, so I ended up doing the panel over for them as well. I think our pediatrician thinks I've gone a bit crazy!
  11. We consulted my younger sons gastroentronologist, and he advised us to get the full panel. He didn't seem to think the high immunogloubin was important (and he seemed doubtful that the weak positive meant anything either). We went through another lab, (the first one sent the results to be interpreted at as Labrotory Corporation of America, and they lost some of other kids tests, so we didn't want to go back there) The second set of labs he came up with a score of 51 on the Tissue Trans. AB, IgA (with a score of 19 or less negative and 20-30 weak positive, and 31 or greater Moderate to Strong Positive). So his was clearly positive this time. His IgG and Endomysial tests were both negative. So we're still not sure what to think. He's got another appt with the gastroentronologist on Jan 15
  12. My eight year old son received a positive blood (TTG) IgA test of >100 about a month ago after I called his pediatrician and asked he get the test due to our family history and some recent symptoms we had that led me to suspect we might both have the disease. When the results came in the doctor's nurse called me right away, gave me the number of a Pediatric Gastroentonologist, and instructed me to continue him on a gluten diet for now. I did so, and his appointment is tomorrow. Just last week I also tested positive. My nurse practioner had me make an appt to come in to get the results (mine was 96) and expressed her concern at the high number and it's potentional negative health effects. She gave me a referral for a gastroentronolgist (actually called and made an appt for me next week) and also wanted me to go get a full blood panel and a bone density test (which she also scheduled for me as I sat in her office). She just called and told me that my bloood panel showed my Iron was very low (10!) and prescribed an iron supplement that I'm supposed to start right away. My bone density test will be back in time for my appt next week with the gastroentronologist. I'm impressed with my nurse practioners response, and now that I've seen it, I am wondering if my sons pediatrician shouldn't have ordered similar testing (blood panel, bone density) for him before his follow up appt with the pediatric gastroentronologist. I am assuming the pediatric gastroentronologist will order the tests now, so I'm waiting to talk with him, but I'm a little annoyed, and wondering if I should be getting my son a new pediatricain. Am I being too harsh? It is more typical for general practioners to order folowup testing prior to the Gastroentronologist appt, as my nurse practioner did, or leave it to the Gastroentronologist as my sons pediatrican did? On a side note, my son's pediatrican actually has celiac disease! Which to me makes it more strange that she seemed to take the whole thing as seriously as my nurse practiorner has.
  13. Sorry megsybeth, didn't see your post about that last question. I appreciate that information. I am sure finding out is for the best, and think the diet will be good for us, I just wish we could just get the testing done with already! Guess I need to be more patient, I just hate waiting for tests and appts and having to continue on the gluten foods knowing that it is quite probably causing us all a bunch of grief.
  14. So why get a full panel with my younger son? His score is so high, I don't understand why he would need more blood tests. What more would they tell me? Maybe the endoscopy to confirm, but even then several studies have shown that if a score on the (tTG) IgA is 5 times more than normal it correlates at 100% with a biopsy. So I feel like I should push for Dx now - I don't need the biopsy to see he needs to go on the diet ASAP. Even if he somehow had a negative biopsy I would still feel like he needed to go gluten free, at least a trial. I want a Dx though, so if the Doctor insists on the endoscopy I would do it, I just hope he doesn't have to wait too long. With the other kids, more testing makes sense to me...not sure I can convince my pediatrician, but I think the Ped GI will probably order it if she won't. Can anyone tell me if the high Immunoglobulin A, Qn, Serum for my older son means anything? From what I understand a low score would be significant, not sure what a high score means.
  15. So, to update, my older sons score on the Immunoglobulin A was 287 and normal is 62-236, so again it was a little high.