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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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where 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 Mom2Will

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  1. My 9 year old was diagnosed with celiac in March of 2012 by blood tests and a positive biopsy.  We put him on a gluten-free diet the day he had his biopsy done.  His original ttg was 168.  After 6 months gluten-free it went down to 31.  We got his blood results back today (15 months after original diagnosis, 8 months after the last blood test) and his ttg was 23. (0-19 is considered normal)   The dr. was pleased with this and said we can basically consider him to be in the normal range since he is so close and is pretty much symptom free at this point.  He is growing great - is in the 75% for height for his age and I'm pretty pleased with his overall health but I thought his numbers would be better by this point.  I've read through the forums a little and I'm seeing posts that ttg isn't the right test for dietary compliance?  That is the only follow up the dr. ordered this time - he did not order the full panel.  Should he have done something different?  Should I be satisfied with the 23 since that is only slightly over normal?  Can I ever expect him to be in the normal range?  The dr. said he doesn't need to be retested for a year.   Thanks for reading and for any insight you can give.  His numbers went down so dramatically in the first 6 months that I guess I was just expecting another 8 months to give him a normal reading.   Melissa
  2. Thanks for the advice. I'll look into the Metagenics.
  3. I give him Culturelle Kids Chewable Probiotic everyday. We've been doing that for about 6 weeks or so and it hasn't seemed to have made much difference. Do you think it another brand would be better?
  4. My 8 year old son was diagnosed with celiac disease 6 months ago by blood test and biopsy. His ttg test result was 168 when he was diagnosed. After 6 months on a gluten free diet his ttg came back at 31! I am so happy and impressed that it came down so much. I've been so worried about cross contamination that it is nice to know that we are on the right track. So now I guess we just keep doing what we're doing and hope it keeps coming down. One question - he still has loose stools. The dr. is going to do a stool test on him to check for other things but since he added height and weight and is otherwise doing well he doesn't think it is anything else and is just that his intestines need more time to heal. Has anybody else had the loose stools stick around this long? How long did it take to get a "normal" bm? Thanks! Melissa
  5. Yeah, I was wondering about that. I thought that since she has a sibling with celiac and tested positive on the DGP that he would just diagnose her without the biopsy but he still says that nothing is definitive without a positive biopsy.....
  6. My daughter had her Deamidated Gliadin A test come back positive at 33 (normal is 0 - 19) but her tTG came back well within the normal range. She isn't having many symptoms other than some constipation and eczema and her doctor is going to do a biopsy on her in a couple of weeks. She was tested because her brother has celiac disease confirmed with a biopsy. I guess I am resolved to her having celiac as well but can anybody explain to me why she would have a positive Deamidated Gliadin test but a negative tTG? If her tTG test is negative is a biopsy likely to turn anything up or is it maybe just too early for her to be properly diagnosed? She is 5 years old, if that makes a difference.. Thanks Melissa
  7. He's a little bit older but not old. And then I find out later that he told my husband that even if he has celiac "he can just start eating rye bread instead." Oh really? I would have more respect for a doctor who told me he really wasn't familiar with a condition but would research it rather than one who just gives out blatant misinformation. I've not heard too much about the DGP test, I'll have to look into that. But my son tested positive with tTG and with biopsy so if my husband came back positive for tTG I would think that would be pretty conclusive for celiac. I might need to try to convince my husband to look for a new doctor....
  8. Ugh. I am so frustrated. My 8 year old son was recently diagnosed with Celiac. He had positive blood tests and a positive biopsy. So everyone else is being tested too. My husband went to his primary care dr. this morning and I specifically wrote down on a piece of paper to have them do the tTG test. So the dr. takes blood, etc. and then gives him a print out of the tests being run. The dr. ordered the IgA and IgG tests and not the tTG. When my husband showed him the paper I gave him and questioned the dr. he said that the tests he ordered are "just as good". Honestly, after reading several entire books on the subject, meeting with a gastroenterologist, a dietician, and reading as much as I can on the internet, I probably know more than the family doc does about Celiac. Why can't they just listen to their patients? When I found out what tests were ordered I tried calling the dr. office and of course they are closed for the day and I'm sure the samples have already been sent out. I know we will get some useful information from the tests he ordered but they are not the most accurate. Melissa
  9. I questioned the dietician about pet food and she didn't seem to think it was that big of a concern. He has a hamster in his room that has wheat in his food and we also have a dog and cat. I was just going to have him not feed the animals but do you think having the hamster and hamster food in his bedroom could be a problem?
  10. Good idea with the vinegar. I'll have to try that. Thanks!
  11. Thanks for the reply. The muffin tins just make me leery since they have that ridge along the tops of the muffin cups. Since I pretty much will never bake with regular flour ever again I decided to just replace them. The hand mixer just makes me nervous because I can tell there is flour on it and it has those vents to the motor. I'm worried that when I use it that some flour could be expelled out through those vents and contaminate whatever it is I'm mixing. Maybe that is too paranoid?? Good to know about the crock pots. Although I just looked at some at the store and they are really pretty reasonably priced. I might replace mine just to get a cool black and stainless steel one to replace my old green with grape vines decorated one and use this as an excuse.
  12. My son was recently diagnosed with Celiac disease. He started his gluten free diet yesterday. I'm going through my kitchen and trying to figure out what to scour and keep and what to toss and buy new. I have two crock pots that I use all the time and was wondering if I need to get rid of them and buy new. I've already bought new utensils, cutting boards and a colander. I'm getting rid of my bread machine, hand mixer and muffin tins. Just when I think I have a handle on this I find more stuff I haven't thought of and I get overwhelmed. I am ok with what he can and cannot eat. What is throwing me for a loop is the cross contamination issue. I don't know for sure what is ok to keep and what I need to replace. Not to mention this is getting expensive. So does anybody know about the crock pots? Also, is glass bakeware ok to keep? Thanks, Melissa
  13. I am where you were a few weeks ago. A few days ago we got the blood work back on my 8 year old son and he tested quite high for both tTG and gliadin IGA. His symptoms have been loose stools (for the past 5 years!) and recurrent stomach pains that are very sporadic. His ped never tested him because he's always been in the 60-70% for his height and 50% for weight. Since his growth was fine she assumed he couldn't have any intolerances and his loose stools were explained away first by "toddlers diarrhea" then as just being "normal" for him. We have an appointment on the 28th with the gastro and I'm assuming he will want to schedule a biopsy. He's still on gluten right now awaiting our appointment, his stomach has been fine recently so this diagnosis seems so surreal. I'm sure once we have the biopsy and start the gluten-free diet it will really hit home. Now I feel so overloaded by information that I almost feel paralyzed. Do you have other children? Have you gotten them tested, if you do? I have 2 other kids so one of my goals for tomorrow is to make an appt. for them to have blood tests done as well. I'm sure I'll get used to it and it will become our new normal but right now it feels like nothing will ever be the same. Melissa
  14. My son was recently diagnosed with celiac. Well, we are still waiting for our appt. with the gastro and possible biopsy. But his blood work came back with values over 160 for both tTG and anti gliadin IGA as well as he's had unexplained gastro symptoms for 5 years so I'm resigned to the fact that he most likely has celiac disease. It goes without saying that we are very new at all of this. I'm starting to plan for his 1st Communion party (Catholic sacrament) in April. I'd like to serve food that is safe for him to eat. And while I think I have a good idea on the foods to start feeding him on a daily basis I'm a little unsure on what to do for a larger party. Our go-to foods for large get togethers are typically fried chicken or pizza or something simple like that. Any ideas for foods to serve that will be safe for my son but do-able for a crowd? We'll probably have around 40 people or so. Thanks! Melissa