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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 shelbysmom

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  1. Thanks to everyone for their input. I have decided to see an allergist and get allergy testing done. If it all comes back negative, I am going to demand to be directed to a nutritionist who can develop an elimination diet for my daughter. I think with some professional guidance, I can finally figure out which foods are causing the problems, even though the gi doc says food is not the issue, yeah right doc! Time to go with my gut and find the culprit through elimination!
  2. Yes she was on gluten for most of that time. I tried trials but kept stopping because of the doctors advice and my husband kept talking me out of it. I know that sounds bad, but the doc wanted her on gluten for accurate future blood work and has insisted many times over and over that gluten was not the problem and that I needed to move past it. That is when he ran all of the other tests which all came back normal. He agrees that something is wrong but says food is not it!
  3. Maciemay how did you get the gluten intolerance diagnosis? I am been consulting a new doc that is a pediatrician but also a specialist in food allergy and intolerance. She wants her to get the intolerant test for 96 food intolerances, but I have read that it is not very accurate. Also, I am trying to do the best thing and follow the advice of all the doctors and respect my husband and strive to find the answer. So I understand that I can just go to the store and stop gluten, and upset the spouse, because I am not being held hostage obviously. I am just seeking other peoples opinions and fresh input as I try to fit the puzzle pieces together.
  4. Her first panel was done in Jan 2010. Results: Antigliadin iga < 1.2 antigliadin off 5.7 Endomysial indir iga positive Ttg 12.0 Her next panel done in may or June was all negative. Her genetic test was positive Her biopsy was negative even on special slides
  5. She was ttg positive and ema positive and gene positive. The doc called it false positive because biopsy was negative. On repeat celiac panel,she was negative. I will have to hunt down the results.
  6. My 3 year old has been struggling for a long time. She had a positive ttg and positive ema a year ago after a five day hospital stay for a 15 day stomach virus. Her biopsy was negative. She was positive for the gene. She was retested for celiac in June and it came back negative. She alternates constipation/mushy poop, sometimes normal. She is doing a little bit better since we took her off lactose. She recently started complaining of tummy aches again all the time and now constantly tells me her legs hurt. She is irritable, tired all the time, pale and has the dark circles. Her hemoglobin was low before but is normal now. She has had a million blood tests,stool tests, ultrasounds, X-rays all normal. She is not a healthy child. She has reactive airway disease, and is sick all of the time. I am going to have the food intolerance panel done to see if anything comes up. My husband does not support going Gluten free without diagnosis. He thinks I should listen to the go doc who is convinced she does not have gluten issues. Pretty sure the doc thinks I am crazy. For all you parents out there who are dealing with similar issues, please help. I would just kick all gluten out of her life, but that is pretty impossible without my husbands support. I should add that she is gaining weight again and growing. She does bloat sometimes. Also i have autoimmune hashimotos thyroiditis but her thyroid is normal. Is there other things we have missed testing for? I can't take much more of this. She is so tired, there are times that she just lays around when others around her are playing and going crazy. Help!
  7. I need some opinions from all you parents out there! My 2 year old daughter was given a celiac panel when she was in the hospital in January with a 15 day long stomach virus. The TTG came back "slightly high positive" and the EMA came back positive. She is also DQ2 positive. Her pediatric GI did the EGD the following week, and the biopsy came back negative. He says that her small intestines look perfect, he even did the special stains that there was absolutely zero damage! She is very symptomatic, with alternating constipation/mushy, stinky stools, stomach aches daily, mild bloating, small chest, low weight, irratability that I would call extreme at times, Reactive Airway Disease, and sick all of the time. Not to mention, the two stomach viruses that she has had in her life have lasted 10 and 15 days, with the rest of the family sick for no more than 36 hours! The docs explanation for the positive blood, but negative biopsy is that it could be a false positive blood panel. When I asked him, yesterday, how often he has seen a false positive TTG, he said just a handful of times. When I asked if how many times he has seen a false positive EMA, he said never! No diagnosis yet though! He wants to recheck her blood in May, and says if she is still positive, then he will diagnose her a celiac without another biopsy, as he would consider two positive blood panels a positive diagnosis. But why? Why do we have to wait if he has never seen a false positive EMA!!! He says I could put her gluten-free, as that is my choice, but if I can just wait it out a couple more months, we will have an accurate reading and diagnosis. He is sending me for a Celiac panel, as I already have autoimmune thyroid disease, and claims if I am a Celiac, then most likely my daughter is going to come back positive for sure. Did any of you have to go through months of waiting and giving your child gluten, before being diagnosed? Also, has anyone else here had a positive blood, negative biopsy child diagnosed a celiac.
  8. Thanks to everyone for all of your thoughtful responses. I went and had Shelby's blood drawn this morning for the genetic test, and now I will have to wait...I have been messing around with a gluten free diet, and have noticed that when I sneak gluten in, she immediately complains of a tummy ache!!! I feel like I know deep down that Shelby has Celiacs, but I am trying to trust the doctor, as he is supposed to be one of the best. When we get the results of the gene test, I feel I will know for sure if she is positive. That would be too many pieces of the puzzle fitting together, to deny a diagnosis. I have never felt so angry and frustrated in all of my life with all of the confusing, conflicting results. I am trying to calm my nerves and ride this out, as I am now aware that this process is going to be a long and tedious one.
  9. After talking with the GI doc again, I was able to determine exactly which blood work he requested. Of the blood work that he did, her TTG was slightly high positve, and her EMA was positive. Based on what I have read, EMA is Celiac specific, and has virtually 100% accuracy. He is still saying that because the biopsy was negative, he thinks that the blood work could be "false positive" due to being too soon out of infection???? I can't wrap my brain around this, as EVERYTHING I have read has stated that there is no false positive EMA! He wants me to keep her on Gluten, and retest her blood in May. In the meantime, he says I can get the genetic test done. I am having a really hard time deciding whether or not to keep gluten in her diet, as she is soooo symptomatic. Her behavior just keeps getting worse. Her tantrums are getting much more severe. She is hitting, biting, screaming, and just insane at some instances. She is waking up screaming at night. This all on top of the increased stools, tummy aches, bloated abdomen, lack of weight gain, darkness under her eyes, thin chest and arms,constant illness, etc. She is not a miserablly ill child. She plays and has energy. She has bad moments, yes, but she is overall a playful 2 year old. I know that her doc is one of the best, but I feel like he is just as baffled as I am. It is sooo rare for the EMA to be positive, and the biopsy be so negative. He says her intestines look PERFECT! I am so stuck in this middle, maybe, diagnosis. It is really starting to drive me insane! If I put her on a gluten free diet, how long before her May blood work does she have to be back on Gluten?
  10. He did mention the genetic test as the next step, but said most ins does not cover. I wonder if it is necessary to spend the money, when the blood work is positive, and the symptoms are right on with Celiac. I am sure we will go ahead with whatever he recommends, I just hate keeping the gluten in her diet in the meantime. He does not want us to remove it yet, as it could skew future tests, but it is really difficult for me to keep giving it to her if it can be making her sick. I have autoimmune Thyroid disease, which is another reason Celiac is really adding up for her. She is more likely to have an autoimmunce disease since I have one. I think I am going to be tested for Celiac as well. Is it possible that her biopsy came back negative because she is so young and new into the disease, or would damage occur this soon on in the disease? I know in my heart that something is wrong, and really want to fix it. I agree that I believe that we are headed for a gluten free life, I just wish I knew exactly what was going on!
  11. Hey, I am hoping for some answers. My 2 1/2 year old daughter has had chronic bowel issues most of her life. Since about 6 months, she has had chronic constipation issues, alternating mushy diapers. She is sick all of the time. In her short life she has had RSV, Bronchitis, Croup, Strep twice, multiple ear infections, continuous coughs/colds, and horrible stomach viruses (one lasting 10 days, one 15 when the rest of the family had it for a day). She has been diagnosed with Reactive Airway Disease recently. She has become much more irritable over time. She is complaining of tummy aches all of the time, and has bloating every day now. At this time, she is having anywhere from 3 to 6 stools a day, some formed, some mushy. She is hungry all of the time, and is begging for food nonstop. She has been 24 pounds for what seems like forever. With this last stomach virus, I took her to the ER on day 12 of sickness. They admitted her to the hospital and kept her for 5 days. She had multiple stool samples to test for bacteria/parasites. She also had a Celiac panel ordered by the pediatric GI she saw at the hospital. The panel came back positive for Celiac, so the GI set up a scope. The scope and biopsy came back negative. Before the scope, the GI was pretty convinced that she had Celiac, but now who knows. He says it is possible for the TTG to come back positive but not have Celiac??? He does not think I should put her on a Gluten Free diet yet, as she does not have an official diagnosis! Can anyone please offer any similar stories, advice, or help on this matter. I just want my child better.