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PaigesMom

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About PaigesMom

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  1. My daughter is only 4, and she has Down syndrome. It is extremely difficult to explain to her why she has to eat certain types of food, and it came down to the point where she was not eating at all and she was losing weight. We stumbled upon this in the Down syndrome heath protocols - they recommended a screening at age 4 and that's what came back positive. She had no other 'symptoms' - the pediatrician did bloodwork and her IGg/Ttg came back at a 98, they did the biopsy and the biopsy was negative. They told me to keep her on the diet but again, she was becoming sick, so they told me to take her off of it, considering the negative biopsy and they would do more bloodwork. They did the Celiac Genetic Test which showed the genetic marker (however 30% of the general population also has it - it's just a marker) and this time her Ttg/IGg came back as a 10!! They were going to rebiopsy her IF the bloodwork came back positive, but with a negative first biopsy and negative second bloodwork, no symptoms, picked up by chance on a regular health screening, they are now saying that the first set of bloodwork was wrong. I have read over and over again here how bloodwork is not reliable. I'm not sure what to believe, if she has it or not.
  2. Does anyone know how long it would take for positive bloodwork to appear again AFTER going OFF OF a gluten-free diet? My daughter had + bloodwork, a questionable biopsy, and went gluten-free for 5 months - went off of the diet in November and had more bloodwork done in the beginning of February - TOTALLY NORMAL results, well within the normal range. The dr.s are saying she might not have been off of the diet long enough? I thought that bloodwork would come back positive fairly quickly, am I wrong on that? Thank you.