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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 brit16

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  1. MitziG - thanks for the reply. The reason I haven't updated is because we are in the middle of our gluten challenge. We are having more blood test ran at te end of Jan, and feb 6 we have an endoscopy and colonoscopy scheduled. Our first GI pretty much went straight to getting the biopsy, after the ttg igG was positive from our ped. He didn't even run any blood work. So we went to a new GI after months of gluten free without a real obvious improvement. The new dr is good. She is running quite a bit of blood work ttg igG, DGP igG, some more test, but I'm not sure if it includes EMA? Should I request this as well? He is also iga deficient so it is making things more difficult. He was negative for the DGP test, when the ttg came back even more elevated, that is what seems confusing. Thanks for your help.
  2. Thank you so much for the input. The things you are saying (too young to be growing that slowly, the test results not being "normal", are the reasons I still feel concerned.) I guess it is hard to trust your instincts when you have so many people (including doctors) saying everything is fine, we will just wait and see. When I express my concerns to others they say things like "he doesn't look small"..... He doesn't look small, but that doesn't change the fact that he is growing VERY slowly. I guess my other question is how long does he need to be "gluten free" before we could determine if it is making a difference? Am I jumping the gun trying to determine "improvement vs no improvement"???? (We went gluten free July 8th - of course there is a learning curve and there have been a few mistakes along the way.) I am seeing a new pediatrician tomorrow who seems pretty knowledgeable (had a chance to speak with him outside the office about my son). If I don't feel comfortable with his "plan of action" then I will look into Mayo further. Thanks again.
  3. Wow, every clinic should be ran that way! I know Texas Children's is supposed to be a great hospital, but that is part of my complaint, they don't seem to be getting the whole picture. When he told me about the low IgA he basically said that he didn't know much about it and that I may want to see an immunologist. But couldn't even tell me if I needed a referral and basically left it up to me whether or not to see one. Of course we would spend anything on my sons health, but expenses are an issue for us. We would have to fly to Mayo, we are in Texas. I still feel like maybe he is fine, and I am making something out of nothing..... He is happy, seems healthy, and still appears to be normal size. His weight is normal, he is just a little short. But then again, I think about the fact that he has only grown a little over an inch between 12 months and 22 months and that just doesn't seem right to me. I would like to think that he could get the care he needs here, but it is so hard to know when to move on. How do you other parents know how long to "wait and see" and how quickly to go to other measures??? Thanks again everyone.
  4. Thank you. I hear people talk about the "Mayo Clinic" all the time, but I guess I really don't know what it is or where it is located. I will look into that. We are currently going to "Texas Children's" which is a hospital that people come to from all over, but honestly I have not been impressed with my particular doctor. You are the first person that mentioned the total IgG, I didn't know to suggest that. He wasn't even going to run the total IgA until I requested that he do so. Thanks for your help.
  5. When you say explore additional food intolerances what exactly are you referring to? Thanks! He has not had any allergy testing done, is that something we should be looking into?
  6. Thank you for the links..... I read through each one of them. Just wish I knew if I was "reading into things" or if there is a real reason to be concerned. Everyone seems to think that he is happy and looks "normal" so he must be fine, but I am not a paranoid mom at all, and I feel like there is something going on.
  7. I posted a few months ago, concerned about my then 18 month old. He was having chronic diarrhea and did not seem to be gaining weight. We went through a lot of testing, with no real answers.... Test completed: IgG ttg --- 7.5 below 6 was negative (considered slightly elevated) total IGA --- low (can not use IgA based test) reducing substances --- positive (lactose intolerant) Celiac DNA test --- positive Upper GI --- normal We were told no celiac disease (at the moment) but that we could choose to go gluten free if we would like and that we would repeat the upper GI in a few months if symptoms persisted. We chose to go gluten free (and dairy free), honestly hoping that after a few months the symptoms would clear up and that it would have obviously been gluten issues. But that is not really what is happening. We have been gluten free since July 8th (2 and a half months now), and there is no clear answer for if it is working or not. I know it can take a couple months or even longer for symptoms to resolve completely, but I honestly expected something (especially with the poop) by now. At the time he was having pretty much all green and yellow poop (loose every single time). Since going on the diet we have not seen much of the "green poop" anymore, but it still is not "normal". Pretty much NEVER brown and only occasionally firm at all. But I can say that there has been no more bad stomache cramps that he clearly had before accompanying the loose stools. I also thought there would be some obvious reactions when there was a slip up with gluten. we have had a few slip ups and it has not been real clear if they affected him or not. The other symptom he was having was the slowed growth. During the time of the testing (BEFORE going off gluten), he actually started gaining weight again, and is continuing to. BUT he is not getting any taller.... at his 12 month check up he was just under 31 inches which put him close to the 60th percentile I believe, now at 22 months he is right at 32 inches putting him in the 7th percentile. I just don't know what to think now? I am afraid that focusing on celiac could be causing me to miss some other problem. From you experienced folks, if he was your child what would you think of everything, what would you do next????? Thanks in advance!
  8. Who would I asked for these test? The GI or ped? The GI has said he has ran everything he can run, now we just wait ad see. We already took him off gluten, but it has only been a day and a half.
  9. I don't think so, I know there was a white blood cell count, the total iga (which I asked for), the celiac DNA test, and numerous stool test looking for malabsorption. What do these test tell you, sorry for the ignorance?
  10. The GI will not repeat the biopsy for six more months. For us as parents, six months just seemed like a long time to do nothing. We were also thinking if there was an obvious change maybe he could be diagnosed without having to go through another biopsy.
  11. No, no explanation. He just says that test isn't specific, and it could be just an infection.... If he had some bad infection shouldn't it be treated? I just don't get why he is blowing off that result?
  12. Thank you so much for your thorough response. It was very helpful. I'm not sure why he seems to not be taking the igG test to mean anything, I think it is because it was a low positive. He told me he was going to repeat the test, but ended up doing the iga instead. ( before we knew he had low total iga) I was hoping he would repeat the ttg igG but when I asked he said " we don't do that test because it's not as specific to celiac" which doesn't sound like it is true. He gave me a picture of the biopsy, but no, I don't have a copy of any results. He just said they were "crystal clear". I'm not sure if he would do that get or not. Is it something I could ask my normal pediatrician to do? We have decided to go ahead and try the diet for 2-3 months and see what happens. I went and had him weighed today and he had gained weight, but t wasn't the same scale they used the last time, so I'm not real sure if he actually gained weight, or it was just difference in scales. Thanks again for all. The help!
  13. All the results for our 19 month old son are in, and we are still left with no answers. His symptoms are no weight gain for about 6 months ( but no weight loss) and on and off diarrhea, green stools, etc. Test results: - ttg igG 7.5 with less than 6 being normal ("borderline positive") - total iga 19 normal being above 24 ( low iga) - reducing substances positive ( lactose intolerant) - biopsy negative ( took 4 samples - said everything looked clean) - celiac DNA test positive - ttg iga negative ( not accurate because of low iga) So now we are told to wait six months and repeat biopsy. In the meantime we were told we could try the diet now, for a few months, then put him back on leading up to biopsy, or just wait and do nothing. It seems like a long time to just wait..... Dr says he is not celiac because of the clean biopsy and that the high igG could have just been an infection. Any opinions?? It is hard to go through all the testing and still not know anything. Also, he did numerous other test which all came back normal. ( parasites, white blood cell, cystic fibrosis....)
  14. Thanks! I do plan on giving the diet a try at some point - just want to make sure we are done running any test first. He already had the endoscopy done and it was negative.... The thing that confuses me is that the GI doesn't seem to take the positive on the ttg igG that serious.....says it could have just been an infection or something that caused it?
  15. Don't have answers for you - just wanted to tell you that we are going through the same exact thing right now. He is 19 months - constant diarrhea and although he weighs a "normal" amount (24 pds) he has not gained any weight at all in about 6 months. We are also trying to get answers through Texas children's. Who is your dr - we are seeing a GI specialist named Kitagawa. Good luck you - hope you get answers for your little one soon.