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CeliacMommaX2

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CeliacMommaX2 last won the day on March 8 2018

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CeliacMommaX2's Achievements

About Me

Momma of 2 kiddos with celiac- diagnosed at ages 3 & 4.  Strictly gluten free and oat free household.  Oldest child with continued elevated TTG after 2 years gluten-free.

  1. We have 2 children diagnosed with celiac at ages 3 & 4. My husband and I just did genetic testing for ourselves (expecting 1 or both of us to be positive). We both came back negative! Any ideas why? Could our children be misdiagnosed? Both had elevated TTG & EMA that improved on a gluten-free diet and one had very clear damage on her scope ...
  2. I would love to have a Nima sensor, but can't justify the cost for the few times we'd like to use it. Is there an alternative that's less expensive? We can only think of a handful of times we'd like to test and don't want to spend close to $300 for that! Thanks!
  3. Thank you for all of the input everyone! I really want to make oats work being a busy mom of 4 little ones (2 with celiac). But maybe I need to re-think the risk. I wish there were healthy breakfast options that were quick/easy to prepare (and that my kids would eat)! I'm tired! ?
  4. We are reintroducing oats for my 8 year old. We cut gluten-free oats after her TTG remained elevated after 1 1/2 years of being strictly gluten-free. What are the safest oats to give her? I'm nervous with all the talk of the "mechanically separated" processes. Thank you!
  5. It's a tough disease because to be diagnosed, they need enough damage to their gut. So if you want a diagnosis in a really young child, you have to make them sick enough to get a positive result. My son was 3 when we tested him (older sister had just been diagnosed). He didn't have any symptoms, but TTG and EMA were elevated, so we scoped him and he did...
  6. My 8 year old has had a TTG level that has only been negative once in 3 1/2 years (14, <15 is negative). She has been up and down a lot and in the past year her TTGs were 22, 55, 19, 20. Her EMA has been negative for about 1 1/2 years. She is still underweight, but doesn't really have any clearly celiac symptoms even when we got higher TTGs over the...
  7. I'm looking for sunscreens for my kids that are safe (fingers go in mouths, etc) and would like to try to find a non-chemical one. Is Badger brand safe? What do you all recommend? Thanks!
  8. You cannot continue to receive the sacrament in the traditional host, but talk to your church about having a separate pyx with the "low gluten" host (safe for celiacs even though derived from wheat according to Dr. Fasano in Boston). At most churches that offer this, the presiding priest is the one who distributes these hosts. At one church, they have...
  9. My 7 year old's vit D is low (22)... she's been getting 400 IU in her daily multivitamin and I also give her 400 in baby Carlson's drops (when I remember...) What supplements are safe and how much do you give to your kids? Thanks!
  10. Can we trust these companies? I would love to have the option of a "break" from cooking!!!! I am so sick of preparing 21 meals every week for the past 3 years with no break. I really miss the days that I could have my husband grab take out on a particularly busy day and would spend all of my extra spending money on that!!! I just don't trust anyone.....
  11. I believe she's been tested for other AI diseases (it took 2 years to get her to "negative"). 2 GI docs have said the DGP is unnecessary and she's never had one (only EMA and TTG). It would be nice to hear she is "healed" by checking with an endoscopy. Thanks for your insight!
  12. My 7 year old just had her TTG checked again (we were hoping to try gluten-free oats again for her). It was 55! (Up from 21 in October). She was diagnosed 3 years ago and we've had trouble getting her TTG down. (only got to 14, which <15 was considered negative). We are super strict, gluten free household, homeschoolers and never eat out. I'm trying...
  13. Hi Foreignlady! I did not have a chance to read all of the many responses you've received (also a mother of 4 young kids), but would like to share our story with you. Three years ago, my oldest was diagnosed with celiac at age 4 1/2. Her (then) 3 year old brother was also diagnosed after we screened the rest of the family (he had no symptoms...
  14. I'm hoping to donate to celiac research this year. Does anyone have recommendations as to where to donate? Celiac Disease Foundation? Celiac research at a hospital or university? Thanks!
  15. My daughter's TTG levels were elevated for 2 years, then she hit 14 (<15 is negative), then went back up to 24. Her EMA is negative. I just saw the article "Can Undetectable Negative Tissue Transglutaminase IgA antibodies Predict Mucosal Healing in Treated Celiac Disease Patients?" and am all worried again about her. Does this mean she's not healing...
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