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CeliacMommaX2

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by CeliacMommaX2

  1. CeliacMommaX2
    Thank you for the congrats! We were thrilled to have her TTG finally come down. We were prepared and about to start the Fasano diet if it wasn't! We're actually having a bit of a hard time believing it is actually down and are trying to determine if it is because we also recently cut quinoa from her diet. Thank you also for the information about the...
  2. CeliacMommaX2
    I just wanted to chime in that we have 2 children diagnosed (at ages 3 and 4 1/2) with their great aunt as the closest known celiac. We now suspect at least another great aunt and maybe grandmother also had/have celiac but don't have confirmed diagnoses. Remember, that a large number of celiacs (80%?) are undiagnosed as the symptoms vary so drastically...
  3. CeliacMommaX2
    Our daughter has been strictly gluten-free for over 2 years now. She's had labs checked every 3-6 months and this is what we've seen (TTG only): 69, 73, 81, 41, 64, 14. They are telling us she's "negative" now that her TTG is at 14 (looks like the reference range on the lab is negative is <15). I'm seeing other places where <10 is negative, or...
  4. CeliacMommaX2
    Here's our story: 2 years ago, our 3 and 4 1/2 year olds (at the time) were diagnosed with celiac. We were convinced to put them both through a biopsy after having positive labs. Our 4 year old's small intestine was clearly and significantly damaged and she was quickly diagnosed. Our 3 year old's biopsy only showed a little damage, but not enough to diagnose...
  5. CeliacMommaX2
    Thank you for the corrections! I hope I didn't lead anyone wrong! Sad, that after 2 years, I'm still not sure about all of the labeling!!!!
  6. CeliacMommaX2
    I just wanted to chime in and say I hope your daughter gets to feeling better soon. I know how overwhelming it can be as a parent to navigate the celiac world for our little ones. My daughter was diagnosed at 4 (almost 7 now) and was very sick with a lot of damage. It takes a while, but you will soon get used to bringing her food where ever you go. I...
  7. CeliacMommaX2
    Someone correct me if I'm wrong, but I believe companies can label foods "gluten free" as long as they have no gluten containing products in the ingredients. "Gluten free" labeled foods can still be highly cross contaminated and even test above the 20 ppm standard. I've started only purchasing foods labeled with the "certified gluten free" label as I believe...
  8. CeliacMommaX2
    We've been completely oat free for a year now. We've eliminated quinoa and decided we are going to go for the Fasano diet, but only for her (which I know will be tough to see her little brother and sisters getting foods she can't have). I don't think I can make things from scratch for a family of 6. We plan to make a vacation of the road trip to see Dr...
  9. CeliacMommaX2
    Does anyone know where I can get more info about Dr. Fasano's diet? I plan to start my 6 year old on it and can't any find details... I have so many questions! Any blogs out there that anyone knows about with recipes/ideas? Why no frozen fruit? I get that frozen veggies are often processed with seasonings, but fruit? Why is Gatorade allowed?...
  10. CeliacMommaX2
    I posted last month about not knowing what to do about my 6 year old daughter's elevated TTG... "Elevated TTG after 2 years of gluten free diet in 6 year old" (TTG over the 2 years: 69 -> 73 -> 81 -> 41 -> 64) We saw our GI doc and she was not concerned and just said we'd check her labs in another 6 months and to not change anything since...
  11. CeliacMommaX2
    Thank you, everyone for your input and for all of the helpful links and personal experiences. At first, we thought we would just follow the doctor's instructions and not change anything and check more labs in 6 months. But it is soooo hard not to DO something! Yet, she doesn't seem to be having any symptoms. What is everyone's thoughts on proposing...
  12. CeliacMommaX2
    My daughter's labs have been the following: diagnosis: TTG 69, EMA >1:320 6 months gluten-free: TTG 73, EMA 1:80 12 months gluten-free: TTG 81, EMA 1:80 (we eliminated even gluten-free oats at this point) 18 months gluten-free: TTG 41, EMA 1:20 2 years gluten-free: TTG 64, EMA 1:20 Her TTG levels are right where we started...
  13. CeliacMommaX2
    Does anyone know if terra cotta clay is gluten free? I assume it is, but thought I'd just check with others. My 4 & 6 year olds are supposed to use it at camp next week for a craft. Thanks!
  14. CeliacMommaX2
    Anyone know of any baby food pouches that are gluten free? We love to have them on the go for our kids (not just baby), but I have no idea which ones to get now! We used to get Meijer brand and Plum. Thanks!
  15. CeliacMommaX2
    Thanks for everyone's suggestions! I think I felt at a loss when we had to cut oats- we used to do cheerios and oatmeal regularly and now those are out. She has a sensitivity to oats as well as wheat/barley/rye.
  16. CeliacMommaX2
    So good to know! Thanks! Anyone know of good "pouches" that are gluten-free? We use those for on the go snacks often, but I don't know what ones are safe- I thought the plum ones were!
  17. CeliacMommaX2
    My 6 year old is gluten free & oat free, doesn't like eggs or any other breakfast meat besides bacon. I need help with breakfast ideas! I feel like all I can get in her are pancakes, yogurt, chex cereal, and bacon. Does anyone have any ideas for me? Thanks!
  18. CeliacMommaX2
    Update: we ended up drawing more labs about 1 month after cutting oats. TTG is down to 50 and no sign of other AI diseases! Is this thanks to cutting oats? I wasn't sure if the TTG would drop that quickly from that. They wouldn't order a DGP since we don't have a baseline anyway... maybe I should start requesting that one? After reading some...
  19. CeliacMommaX2
    My 6 year old just got prescribed an antibiotic (keflex) and is the liquid pink stuff they give kids. I just realized I didn't ask if it was gluten free when I picked it up from the pharmacy! Anyone know if I should be concerned? Does that pink stuff have gluten?
  20. CeliacMommaX2
    We suspect my 6 year old cannot tolerate gluten-free oats either... do we need to treat them just like wheat as far as CC issues? Should I not cook oatmeal in pots that we prepare her food in?
  21. CeliacMommaX2
    We are having a fairly large party at our house for my daughter's baptism. We are strictly gluten-free here and want to keep it that way for the party too. I'm in need of ideas of what to serve. So far I have chips & dips, veggies, fruit, gluten-free crackers & cheese. I'd like to have some sort of cake or cupcakes, but don't know what is good...
  22. CeliacMommaX2
    My 5 year old's TTG has not gone down after a full year of gluten free (to the extreme- almost no food prepared outside our gluten-free kitchen). We have now cut oats and wonder how long it would take for her TTG numbers to come down if that was what was causing them to stay elevated. Anyone know what time frame to recheck? Thanks!
  23. CeliacMommaX2
    We have cut oats and are also doing some more testing in case of any other autoimmune diseases. Hoping it's just the oats! I had always thought that oats were not safe because of cross-contamination. I didn't realize they had similar proteins to gluten! Thank you for all of the thoughts & input!
  24. CeliacMommaX2
    We are crazy extreme (or so we think) on her diet. She is homeschooled and is sent with her own food when at activities with snacks. How can I figure out what we're missing?! The other lab that they did was the EMA. 1:320 on diagnosis, 1:80 at 6 months & still 1:80 at a year.
  25. CeliacMommaX2
    My 5 year old's TTG level is not dropping. It was 69 when diagnosed a year ago. At 6 months gluten-free it was 73, and now a year later is 84! We are a strictly gluten-free household, don't eat out, and bring food with us everywhere we go. I'm trying to figure out where to go from here... Should I just be patient and wait? Cut other foods (can gluten...
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