Ecgmmom
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A Journey Through the Nexvax2 "Celiac Disease Vaccine" Clinical Trial
Ecgmmom commented on Kelly Carter's article in Spring 2019 Issue
Thank you for sharing your story! I am a mom of an eight year old little girl diagnosed a year ago. She too has violent reactions, although the more frightening part is that one of them is neurological; her legs go numb and she cannot walk. We bought the NIMA device last May and it has been instrumental in allowing our family to travel and eat out again like... -
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A Journey Through the Nexvax2 "Celiac Disease Vaccine" Clinical Trial
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Nima Sensor maker Nima Labs Claps Back Over Gluten Sensor Data
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Nima Sensor maker Nima Labs Claps Back Over Gluten Sensor Data
Ecgmmom commented on Jefferson Adams's article in Additional Concerns
For the life of me I cannot understand the negativity towards Nima by so many celiac sufferers! It’s is a TOOL, not a CURE- use it or don’t, you aren’t losing any ground by continuing to avoid risky foods/situations. For us, my daughter’s diagnosis was life-changing but Nima has given us back some peace of mind. Yes, my daughter (7) has HORRENDOUS reactio... -
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7 year old and biopsy
Ecgmmom replied to AnneR's topic in Parents, Friends and Loved Ones of Celiacs
I was in your shoes in January...after a ttg well over 100, there is little doubt of the cause! I got two opinions and both doctors emphasized the importance of the endo because high antibodies are not always due to celiacs and the only true way to know is to biopsy. I was very concerned about the procedure but she did fine and we saw pictures of her inflamed... -
terrible symptoms, need feedback
Ecgmmom replied to Ecgmmom's topic in Parents, Friends and Loved Ones of Celiacs
Her ferritin got as low as 4, that’s when we were referred to Stanford. To date, the highest it has gotten so far is 12 but we are moving in the right direction. No infusions were ever offered as she was only anemic once several years ago....her body managed to keep the hemoglobin up by depleting the ferritin! -
My 7 year old was dx with celiac disease in December, via blood and endo after we took her to Stanford for chronic low ferritin (only "symptom" since 18 mos old). Fast forward four months, she is gluten free and tells me she "finally doesn't have a tummy ache every day". I am heartbroken that I didn't realize any of this sooner. Ever since we have been...