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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
    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. CeliacMommaX2
    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. CeliacMommaX2
    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. CeliacMommaX2
    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. CeliacMommaX2
    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. CeliacMommaX2
    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. CeliacMommaX2
    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. CeliacMommaX2
    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. CeliacMommaX2
    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. CeliacMommaX2
    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. CeliacMommaX2
    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. CeliacMommaX2
    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. CeliacMommaX2
    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. CeliacMommaX2
    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. CeliacMommaX2
    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...
  16. CeliacMommaX2
    Everyone here has had great advice! Celiac has made me a stronger person in standing up for myself and my family. I HAVE protect my children as their mother, so I must stand up and do what is best for them. We travel to visit family often, and while we get lots of questions and people who don't get it, I bring our own pots/pans, utensils, cutting board...
  17. CeliacMommaX2
    We were stressed about this as well with our daughter. It ended up taking 2+ years to get her to "negative" TTG levels (which then came up again at 2.5 years). We also live in a gluten-free household and never go out to eat. Because she started growing again, the doctors are not concerned. But as a mother, I'm always worried about it! Just do your best...
  18. CeliacMommaX2
    I know this started out as an old post, but I wanted to comment that an encopresis diagnosis is what led us to finding celiac in our 4 year old. What helped us to beat the encopresis is Dr. Collins method- Soiling Solutions. (plus I'm sure the gluten-free diet helped!)
  19. CeliacMommaX2
    Thanks everyone for the tips on where to eat in Boston! We had lunch at Whole Foods and were going to try to go to Legal Seafood, but they were too busy and the kids were tired. We did find a great allergen free bakery in one of the markets and got the kids muffins and blueberry coffee cake as a treat! Loved our time in Boston- what a great place!
  20. CeliacMommaX2
    My husband and I have been convinced to go through genetic testing (if not too expensive). I have a few questions... Do I ask the doctor's office or call our insurance about how much it will cost? If both my husband and I have both genes, does that mean all of our children will also have both genes? We already have 2 with celiac, so it seems our...
  21. CeliacMommaX2
    Thanks for all the great info! Great to know about the Whole Foods nearby. My daughter has proven to be very sensitive, so we really appreciate the input! I hope someday we can actually feel comfortable going out to eat with her. Hopefully we can learn more at her appointment in Boston!
  22. CeliacMommaX2
    Thanks!
  23. CeliacMommaX2
    How is everyone handling the non-celiac siblings? Mine have 2 little sisters who have not had gluten (living in a strictly gluten-free household and go no where without us). I know it would be easier when we are off visiting family or friends to just feed them the "gluten" food provided, but we just bring gluten-free food for the whole family. I'm not...
  24. CeliacMommaX2
    Wow! It sounds like you are describing my 7 year old! We have the same problem. Celiac is making us so very anti-social. There have been multiple occasions that I just declined invites because she is that sensitive to tiny amounts of gluten. I struggle enough with just family get-togethers in which I'm there! I wish I had good advice for you...
  25. CeliacMommaX2
    We are taking our children to see Dr. Fasano at Mass Gen and will be in Boston. We will only take them to dedicated gluten-free restaurants right now- Does anyone know of a good one in the Boston area? Thanks!
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