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Everything posted by zenmama

  1. Andrea Biopsy Update Andrea had her procedure today. Everything went well and there were no complications. Dr. Al-Tawil found Lymphonodular Hyperplasia in the descending colon, cecum, ascending colon, transverse colon, sigmoid colon and rectum. We will not have the biopsy results for 2 weeks. We have an appointment to discuss the results on 2-12. We are now continuing the STRICT Gluten Free diet. Dr. Al-Tawil warned us that not doing so could lead to more significant health problems such as Lymphoma and Cancer. We are home now and Andrea is eating well and resting. We have an appointment with the nutritionist on Tuesday. I would love any thoughts on this as my mind is spinning and we are sleep deprived from the bowel prep, long drive and early morning!
  2. we are working on this as well. dd (15 mo) has Celiac and ds (3) only has seasonal allergys. While I dont mind gating gluten-free (I am also a vegetarian), Dh isnt a fan of it so we are woring out the kinks as we speak!
  3. We are going Gluten Light till the biopsy. She is still drinking some Peptamen too because she just needs the nutrition but I slip her some gluten daily just not mass amounts to make her miserable. I want this biopsy done and over with!
  4. If he has been on the gluten-free diet for a week it could take a few weeks for that to straighten out. I realize you are scared I am to as a mom with a child with this disease. Would the mom let you go to the appointments? I know my MIL is welcome to come with me anytime because I feel that the more people in my family that are educated about Celiac and my child the better it will be for her as we adapt to this new lifestyle.
  5. I cant comment on Formula because I breastfeed. However my 15 mo was put on Peptamen Jr to supplement her diet and it has done wonders for her weight. Introducing Rice Cereal at 4 mo isnt a have to, he may just not be ready yet
  6. After 5 weeks of diarrha and blood/stool tests with no results or ARNP referred us to a PED GI who tested her for Celiac.
  7. after 5 weeks of diarehha and blood/stool tests with no results or ARNP referred us to a PED GI who tested her for Celiac.
  8. Children's Pediatric Gastroenterology, PC Knoxville, Tn affiliated with East Tennessee Childrens Hospital Our ARNP Teresa Renner in London , KY referred us and is very understanding and easy to work with about Celiac.
  9. i had that problem and i figured out the solution, after you boil it and drain it IMMEDIATELY rinse with cold water and that makes it all better!
  10. we decided to go ahead with the biopsy. It is scheduled for jan 31st. Thanks for the advice on getting it done now not later. They did tell me they thought there would still be enough damage to tell and to keep her off gluten so we shall see.
  11. i guess my question is : What benefits from the biopsy other than conformation. If removing gluten makes her better isnt that the most important factor?
  12. the only way to know for sure would be to get tested.
  13. My dd had a positive ttg (over 75) and she is 15 mo. At our last appointment we decided to schedule the biopsy in April b/c I am very uncomfortable with it at this time..... ANYWAYS I thought that I was told to go Gluten free, but maybe i misunderstood. dd ate something woith gluten in it on accident the other day and has been ill for 4 days. but if we go off gluten, the biopsy wont be accurate correct? Do i need to call her doctor and tell her about the rash/belly aches and bump the biopsy to sooner than later? i am so confused!
  14. hmmm...i think i should call and ask then. I think i misunderstood them. I am not comfortable with them putting my daughter under. They wanted to do it on the 21st of dec and i declined. I guess it just scares the crap out of me b/c there is a history of allergies in our family to that stuff. I do know when she eats gluten she gets diarehha and BAD rashes and blisters. So I feel like taking it out is defiantely what is best for her....maybe a followup is in order... Hi dandelionmom
  15. Hi! My 15 mo daughter was recently diagnosed. She has constant diarehha and we saw a pediatric GI who did a RAST as well as blood and stool tests. We have removed Gluten, dairy, soy, eggs, wheat fish and nuts from her diet and she is drinking a nutritional supplement called Peptamen JR. She is also breastfed but my BM doesnt seem to irritate her only the direct consumption of the foods. We are going back in April for a biopsy of her small intestine. I was told from her blood test that normal for her is under 25 and she was way over 75...but I dont know exactly what that means. So I will be lurking for a while and posting questions as they arise. This sounds like a great place to start!
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