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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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere 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 MTsky

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    1. MTsky added a post in a topic Gluten Free Menu Vs Without Gluten Restaurants   

      We have a completely gluten free deli in our small town and it is doing amazingly well! They started out kind of slow, but now they are always packed. They do not allow outside food into the restaurant to maintain the gluten free environment. They are not other allergen free, however. I am just so thrilled that it is here!
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    2. MTsky added a post in a topic Birthday Cake   

      I used this cake recipe with good results

      I also made cupcakes with this recipe that everyone loved at his birthday party.

      I used Gluten Free Mama Almond flour blend for both.
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    3. MTsky added a post in a topic Gluten Free In Big Sky Mt   

      I live in Bozeman and our town is amazing when it come to gluten free dining. I have not spent time in Big Sky since going gluten free, however. Yellowstone is terrible! No one has a clue what you are talking about in reference to gluten free food there. We spent the weekend in West Yellowstone this past winter and I starved for two days and finally risked a salad with ranch dressing and was somehow glutened from that! I would imagine that Big Sky would have some decent options, however. Be prepared to bring your own food with you into Yellowstone, though.
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    4. MTsky added a post in a topic Kids Birthday Parties   

      For my son's 5th birthday party last week, I did a big fruit salad, corn chips with a cowboy caviar type of dip and caprese salad skewers. Not typical kid food, but the kids all loved it! I was actually kind of catering to the adults, but the kids really enjoyed the food!
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    5. MTsky added a post in a topic Products For Curly Hair   

      I am so glad to find this! I had fallen in love with Mixed Chicks products and couldn't figure out why my head kept itching. Finally read the label on the leave in conditioner and it had wheat listed. I haven't found anything I love since then. I will have to try these out!
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    6. MTsky added a post in a topic Pediatric Use Of Miralax   

      No our GI did not tell us to go gluten free. She told us that he was fine and needed no special diet. I decided to try him gluten free on my own. If it makes a difference, his tTG was only a "weak positive". He did NOT get the full celiac panel done. Just the tTg and IGA. I tried to fight our ped on that one and he felt it was unnecessary to run the additional tests. I didn't push it because we had the biopsy scheduled and I figured that was more important. I am beyond frustrated by it now that his biopsy is negative and he is showing so much improvement being gluten free!
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    7. MTsky added a post in a topic 2 Year Old With Speech Delays   

      My son is almost 5 and has childhood apraxia of speech. His speech therapist is convinced there is a connection. She says that she sees two other kids just like him who are celiac, small in size and have similar speech problems. I am really hoping to see an improvement in my son now that we are gluten free.
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    8. MTsky added a post in a topic Pediatric Use Of Miralax   

      He is currently just taking 1/3 capful daily. I haven't tried weaning him off of it or stopping it yet. I am leery of stopping it because when he has missed more than a dose or two in the past, he starts vomiting, and then he finally poops and all is well. I am thinking of maybe weaning down a bit and seeing how he does.
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    9. MTsky added a post in a topic Confused After Endoscopy!?   

      Wow, sounds a lot like what we are going through. My son had a positive blood test and normal biopsy. His primary symptoms were very poor appetite, very small size and chronic constipation. I decided to take gluten out of his diet anyway and I have seen dramatic difference in his appetite and he has put on 2 lbs and one inch in just 4 weeks. I am almost more confused than ever. I completely understand where you are coming from.
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    10. MTsky added a post in a topic Pediatric Use Of Miralax   

      So those of you who have kids with celiac who had constipation, how long after going gluten free did it take for them to be normal? And did you just stop using miralax? At what point? My son was blood test positive, but biopsy negative. We took him off of gluten immediately after the biopsy, 4 weeks ago. In those 4 weeks he has gained 2 lbs and one inch. I am still giving him the miralax daily, but I am really hoping that his constipation will resolve being gluten free.
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    11. MTsky added a post in a topic Conflicting Doctor Advice Regarding My 4 Year Old   

      I just wanted to update this. My son had a biopsy done that came back as normal. It was done two weeks ago and we immediately took him off of gluten. I am very interested to see what happens now. In the past two weeks he has gained a little over a pound. In the 10 months prior to that, he had not even gained that much. I know that one pound is not telling, but I am guessing that the number will go up over the next few months. In any case, we are thrilled that it appears that he does not have celiac, but if he does better on a gluten free diet, then we are just happy he is feeling better.
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    12. MTsky added a post in a topic Conflicting Doctor Advice Regarding My 4 Year Old   

      It is comforting to know that I am not alone in this. Thanks again for your input. I had not even considered thyroid. That is definitely worth inquiring about as well. My father is a physician and trying to get a hold of a ped GI to get their advice as well. Luckily, he seems to be doing just fine right now, even though for the time being we do not have him on a gluten free diet. This is still consuming my thoughts, but I feel armed with much more knowledge now and hopefully will be getting some straight answers soon.
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    13. MTsky added a post in a topic Conflicting Doctor Advice Regarding My 4 Year Old   

      Thanks so much! I will ask our doctor about testing them for DGP. That looks pretty promising as far as results are concerned. But, wow, up to a 20% error rate with a biopsy! That is part of my worry in doing it. We live in a fairly small area and there are no ped GI docs here and I am worried about someone doing the biopsy without having a lot of experience. I do think it needs to be done, though.
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    14. MTsky added a post in a topic Conflicting Doctor Advice Regarding My 4 Year Old   

      Thank you all for your insight. My gut is telling me that we need to do a biopsy on him. When I got the first phone call saying that he was positive I was initially shocked and quite upset by it. It just made me so sad. After that reaction wore off, everything just made sense. I guess I am still in a state of denial about it all. For his future I need to know that he has a positive diagnosis. For one thing, it will make it easier demanding that a special diet be followed, and for another, I won't have this doubt that I am doing the wrong thing. In kids, it seems that diagnosing can sometimes be inaccurate. Is a biopsy likely to give us a false negative result? Is it really more accurate than the blood test? And how accurate would a blood test be on his 2 year old sister? I want to test her as well. I don't know why I am so conflicted by this when I know what I would tell someone else to do! I can't believe how hard it is when it is my own child.
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    15. MTsky added a topic in Celiac Disease - Parents of Kids or Babies With Celiac Disease   

      Conflicting Doctor Advice Regarding My 4 Year Old
      I am new here and will try to keep this brief. Quick history: I, myself, have been gluten free since last summer. I had negative blood work, but due to my textbook celiac symptoms, my GI recommended me to try going gluten free. Within 2 weeks, I had put on almost 10 lbs and was feeling better than I had in ages. When I tried to add gluten back into my diet, I had very severe GI reactions. Since that time I have been in this limbo state of not really knowing if I have celiac or not, but assuming I do unless I can ever get myself to go back on a gluten diet to have a biopsy.

      Now onto my son. He is 4 1/2 and has had chronic constipation since he was 2 and I weaned him. He has been on miralax daily since his 2 year well baby visit. I have just gone on with it, hoping it would get better. I have been concerned about it, but just shrugged it away. If I miss more than two doses, he will go days without having a BM. He has had episodes of random vomiting, but I always could associate it to when he hadn't gone to the bathroom for several days. He has a terrible appetite, and getting him to eat is a struggle. He was 50th percentile from birth until 6 months. At one year, he was 20%, at 3 years he was 5% and now he is at the 2nd %. Finally, a couple of weeks ago, I had enough and made an appointment with our ped. He suggested we get blood work for celiac, which I completely agreed with. I got a phone call from the nurse saying that our regular doctor was out of the office for the week, but a different doctor read the results and that he had a "weak positive for celiac, but definitely positive." I guess since I never got a definitive result for myself, I was not expecting it. That doctor told me to immediately put him on a gluten free diet and that our regular ped would be calling us as soon as he was back in the office to discuss it with me. We did and he suddenly started eating a ton throughout the entire weekend!

      Then at the beginning of the next week, our regular ped called us back. He told me that his tTG was a 7, and that they do consider that a week positive. For a negative they want it less than 5. He then went on to say that although they couldn't say it was negative, it wasn't high enough of a number to say it was positive for sure, either. His advice was to keep him on a gluten diet for 3 months and to then retest him. If his numbers went up, then he would say that he definitely has celiac disease. He told me that we could do a biopsy, if I wanted, but that he did not recommend that at this time. So that is what we are going with, but I keep wondering if that is indeed that right thing to do. I hate to put gluten back in his diet if it is hurting him, but I just cannot label him as having celiac for life without having a sure answer. Should I push for a biopsy? Is that where we are heading, regardless? For the time being, while trying to talk to a few GI doctors about him, I have him now on an increased gluten diet. I just feel conflicted at what to do at this point. I also have a 2 year old daughter who I am wondering if I should have tested. She has a fabulous appetite, but is small as well. I was planning on waiting on her until I know for sure about my son, but I wonder if that is wise? Thank you for your input! You all seem to be very knowledgeable and helpful!
      • 11 replies

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