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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 worriedmama

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  1. Allergy Testing all came back negative. No Food allergies. So we can mark that off the list and move on. Last night and this morning were bad. She didn't sleep much last night because her stomach hurt so bad: burning, gas, lots of bloating and cramping and "d". I could hear her gut just sitting next to her. I kept her home for a while this morning until she was doing a little better. The interesting thing is that last night is the first time since we started gluten-free over a week ago that I didn't prepare or supervise the preparation of her food. My older DD made gluten-free cornbread and when it was put on the table I thought to myself "Uh oh. I think there is probably a chance of CC from this." I forget to tell her to use paper wrappers and to wash the pan completely before using it. Maybe I am reading way to much into it, but it seems very interesting that after the first time I suspect there could have been cc she takes a turn for the worse after doing better. I need to keep her gluten-free for at least another week or two before putting her back on gluten and see what happens.
  2. Saw the allergist today and are going to have Food Allergy testing on Monday. We aren't really expecting anything to show up positive, but then again I am not really sure what to expect at this point. I love my allergist though and she agreed that this is the best place to start to begin to rule things out and narrow down the options. She is the first Doctor to really take me seriously and to completely empathize with how hard it is to see my baby in so much pain and misery. Interestingly she is going to test her for the "Top 8" and for a beef/mammal meat allergy. She said there is new research on this type of allergy with many of the same symptoms. Today is one full week gluten-free and she ate breakfast this morning for the first time in several weeks. Said her stomach hurt when she woke up, but she said it passed quickly. And she had a normal BM this morning. A girl in her class is gluten-free and it is her birthday today. DD was so excited because her classmate brought 3 gluten-free cupcakes to make sure that DD could have one (and said she would share the 3rd one with her!). She was very eager to make it back to school before lunch so she could have that cupcake!
  3. Really??? I hadn't seen anything about that and was actually worried that since she is mostly the sickest in the mornings that wouldn't mean it is food related. And of course the drs just say that means she is just trying to get out of going to school (already been told that several times ). But I know my child and I know that she loves school and hates staying home and doesn't "fake" being sick. And no child wakes up in Disneyworld and "fakes" being too sick to go to the parks-- she was sick most of the week we were on vacation the beginning of the month, as well as much of the summer. This child broke her toe this summer and didn't tell anyone for over 8 hours because she didn't want to have to end her playdate! She is tough and if she is crying because she doesn't feel well then it is serious. It sure seems like more and more pieces of the puzzle keep falling into place. Thank you all so much for your input and support. It means so much to me right now.
  4. YIKES! That is crazy. Thanks for telling me! We will definitely skip the DNA thing. Sometimes I really wonder about doctors. I am finding it very interesting that it seems that Food companies are more aware of Celiac/Gluten Free needs than the medical community! Even a few obscure things that I have looked up online say whether it is gluten-free or not. We have another dr appointment tomorrow. I was getting my allergy shots yesterday and mentioned her problems to the nurse/staff. They said that the Dr. should see her so we are going in. She saw her for general allergies (nasal symptoms) last spring but I don't think that I mentioned all the stomach issues. I really like this dr and she seems to really stay on top of current research and has a lot of in depth knowledge, always answers all my questions, and offers all options so I am being very optimistic. Obviously if she does want to order any tests for Celiac (can/would an allergist do that?)we will have to drop the gluten-free and go back to gluten earlier than I had planned. Her symptoms are still kind of up and down. Not the can't get out of the bathroom type of diarrhea, but still the cramping, must go NOW stuff, headache, and the tummy upset waking her up. But I wasn't expecting a quick miracle! Going to make a full list of symptoms so I don't forget anything when we go in.
  5. Thank you! I have printed that out to keep in my growing pile of reference material. Not sure that I understand a word that it says though! I keep seeing people talk about doing DNA testing? What does that involve and what is the purpose? I am also wondering if these blood tests would be inaccurate if she is possibly in the early stages of this getting bad so not much damage has been done yet? My head is still just swimming. I probably need to stop researching the issue, and just focus on the dietary changes. I am actually finding the information on celiac to be very intriguing and have definitely found some things to make me think. I am also thinking that I am going to check with my dr to see if I have been tested. We are very fortunate that the school is very supportive and I have no problems with them. In fact there is a girl in her class that is already gluten-free and another one with a dairy allergy, along with others in her grade with peanut/nut allergies. So they are very careful about what is going on and I don't need a dx to have them involved. Since she was dx with lactose intolerance 3 years ago I have had several calls each year from her teacher or the nurse to check on things when they were unsure if she needed the meds or not-- they always call if they are in doubt. I have talked with her teacher and the nurse and they are on board with whatever I want from them with any dietary changes they try. The school nurse has seen her at her worst and knows how bad her problems are. We are on day four and she is already feeling some better. No diarrhea since Wednesday, cramping less often and with less severity. Is it because of the gluten-free? Don't know, but if it keeps her from crying in pain on the couch then it is worth it!
  6. The reference range is 33-258, so that would put her at the low end of the range. From my reading here, I see that she has to be on gluten for more testing but at this point I don't think I will be able to convince her dr to do any further testing unless we try gluten-free for a month or so, and then put her back on gluten and see if she gets worse again. Then I can go in and say "SEE! This did make a difference!" Then I will have the basis and the education from here to push for more testing and to know exactly what to push for. They have said unequivocally that they will not do a biopsy unless something shows up in the blood work. I have a strong suspicion that they are going to just say that it is still IBS and the gluten-free diet made her feel better because it is easier on the gut to digest so it gave it a chance to rest and recover (because that is pretty much what they already said) Given her young age I think it is important to know if it is Celiac or not. If it were me, at my age, I would just say oh well, I will eat gluten-free and not worry about all the testing for myself if the dr wasn't cooperative. But with all I have been reading here on the long term effects of leaving it untreated I think it is too risky to let it go. She is not happy about this diet change and I think it will be important now and in the future for her to know it is a confirmed lifelong condition. Of course we could also be barking up the wrong tree, but something in MY gut tells me that this is the direction to go now. Fortunately we have good insurance and there are a whole lot of doctors in this area. I am willing to just keep trying new ones until we get some answers. Off to put together a gluten-free meatloaf for the family. This diet may end up helping more than just my daughter!
  7. I am trying to get to the bottom of my 10 year old daughter's ongoing stomach problems. We are trying her on a gluten free diet and every search that I do to get information on specific products or information keeps coming back here so obviously this is the best place to get advice! History: Family: I have been dx with IBS and lactose intol. Dad has acid reflux. Paternal Gma also has IBS. As an infant she was horribly constipated. Switched her to low iron formula (against peds advice ) and no more constipation and no iron problems either. She has had intermittent diarrhea (occasionally constipation)for the last few years with increasing frequency. Self diagnosed her with lactose intolerance a few years ago and using Lactaid has helped some. In the last 6 months it has become more constant. Numerous trips to the Ped over the last few years have resulted in guesses of "abdominal migraine" and "IBS". Missed 7-8 days of school last year, all due to stomach problems. She has had allergy testing for environmental allergies and all were negative. No food allergy testing. I independently set up an appointment with the head of Peds GI at our Children's Hospital the end of last year. Was very unhappy with the visit. With only listening to symptoms said that it didn't sound like anything to worry about, no big deal and gave some meds for the stomach cramping. I had to insist on having at least some blood work done. They did blood and urine test and a few weeks later I got an email saying all was normal. I asked for a copy of the results. Platelet Count and Mono% were high so I emailed back and asked why and was just told no big deal. IgA was 52.2 mg/dl Tss Transg IgA <3 units/ml Diarrhea and cramping have been more and more frequent all summer and have been affecting her quality of life-- had to skip several activities and was sick most of our family vacation a week ago. Finally she had diarrhea so bad the first day of school she had to stay home. She is not an anxious/nervous child and was very excited about her first day and very disappointed to have to stay home, so I don't think it was "nerves". I got her an appt with the ped for that morning and went in demanding answers. I was nice but very assertive. Said that I am tired of being told it is no big deal and I am tired of having to see her so miserable and I want to know what is going on. Well, still got told "IBS" because the blood work ruled out everything else, including celiac. Dr suggested we keep a food diary for a few weeks, and then start eliminating things from her diet and record all of that. Well, she was late to school the next day because of the diarrhea, and so miserable I decided I wasn't going to wait a few weeks to start elimination. We tried dairy free last fall and it didn't seem to make any difference. So I decided to start with gluten free. I know that it is possible to have a false neg test. I have spent the last 3 days glued to my computer researching everything I can find and my head is swimming. Celiac, gluten intolerance, wheat allergy/intolerance. And a whole range of tests I have read about here that I am struggling to understand. So I guess in short: Symptoms--used to be intermittent but becoming more frequent: Diarrhea, stomach cramping, occasional stomach burning, occasional nausea but vomiting is rare, headache, rarely constipation, black circles under eyes. She cant always distinguish how she is feeling and just says her stomach hurts. Behavior and attitude are all very positive and no other symptoms. Does this sound like it could be gluten related? Are there other tests that would be more accurate that I should try to have done (other than a biopsy)? Can someone list and explain all the different test options and explain in plain English? I keep seeing all these different abbreviations and I am so confused. Any help and advice would be appreciated. I just want my baby to feel better! ETA: Forgot to say that she does get occasional nasal allergy symptoms but allergy testing was negative, and she and I also get extremely motion sick.