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dawnd

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About dawnd

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  1. I would love to believe Enterolab will tell me for sure if my 2 1/2 year old has to continue to be gluten free. He has been gluten free for 1 year. I removed gluten from his diet because he wasn't progressing motorically and he always had a rash and he seemed in a fog. I did see changes in him when we went gluten free but in order to commit to gluten free long term I need some numbers. It is so hard to have a child on this diet. I don't want to do a food challenge to see if his behavior changes because who knows why a child's behavior changes day to day- that is too subjective. This is the first time I have heard of Prometheus testing. How is it different from the typical blood test from the doc?
  2. I am in the same boat as Patrick. My son is 2 1/2 and he has been gluten free for one year. He was not progressing and always had rashes until I took him off gluten. But, it is very hard to keep a child away from gluten. I, too, need to know as sure as possible if he has to be gluten free. I plan to do the enterolab testing. Enterolab told me it took 2-3 years for the antibodies to leave the system so he doesn't have to eat gluten again for the test. Any thoughts? This forum has helped me help my little boy so much. Thank you, in advance, for any words of wisdom. Dawn
  3. Enterolab told me it takes 2-3 years for the antibodies from the gluten to clear away. My son has been gluten free for 1 year and they said he does not have to return it to his diet to be tested. DAwn
  4. I understand wanting as much of a definative diagnosis as possible. My son is 2 1/2 and can't tell me how he is feeling and who knows what is making a 2 year old act fussy day to day. We just went cold turkey on the gluten when he wasn't progressing developmentally (he has Downs too). He has been off gluten for 1 year and I am ready for a test that tells me he has to be on this diet. When he first came off the gluten I saw big changes. Blood tests for food allergies showed no allergy and blood test for Celiac was borderline positive. I wonder if the Enterolab test would be accurate if he had it when he has been off gluten for 1 year. I am new to this whole forum thing. Forgive me for asking the same question twice in a row.
  5. My son has been gluten free for 1 year now, can he still have the Enterolab test without eating gluten after this long? Dawn
  6. Andrea, Do you feel like you have a definative diagnosis from Enterolab? I just don't want to assume he has to be on this diet. He has been gluten free for a year - I want to know for sure if we have to continue this. Dawn
  7. The Down Syndrome Association of the Lowcountry is in the Charleston, SC area. Love, love, love Charleston!!! I've never been to Hilton Head but I know it is nice. I'm sure you will miss your vacation spot! How is your son? Does he have any food allergies? Dawn
  8. Andrea, Thank you for your reply. I am so overwhelmed. I don't want things to be harder for Joe than they have to be...I wish I could just know for sure if he has to be off gluten/casen. It seems Enterolab is as definative as any other test. It's hard, as you know. Sincerely, Dawn
  9. I've been reading your posts and you all seem to understand gluten intolerance and other allergies very well. I need some advice for my 2 1/2 son. He has Down syndrome and his first 18 months he always had a rash, seemed to zone out a lot and was not progressing as well as our other friend with Downs. I took him off Gluten and the next day his rashes cleared and he started crawling (we had been working on that for 6 months). Two months later I took him off casen and he showed some more improvement although not as drastic. We had his blood tested 4 months after being off gluten and 2 months after off casen with the following results: Celiac AB Profile Antigliadin Abs, IgA = 2 and IgG = 10. IgE for food allergens (including milk and wheat) less than 0.35. According to many of the posts I have read, if he has Celiac I have to watch his playdough, finger paints, soap and so many things that would make things even harder than he already has it with Downs. I am to the point that I need to know as definitively as possible about the gluten and casen. His GI doc said we can do the upper endoscopy for biopsy to know for sure. IThat means putting him back on gluten. I am afraid to do that - he is in school and it would break my heart to see him regress. I have also been reading about enterolab's stool tests. I don't want him to be on this diet if he doesn't have to be. Please, if you have any insight I would appreicate your time and knowledge. I want to make things easier for him if I can. Maybe one of the allergies were coincidence (maybe that's just wishful thinking, but I need to know for him). Thanks in advance.
  10. I've been reading your posts and you all seem to understand gluten intolerance and other allergies very well. I need some advice for my 2 1/2 son. He has Down syndrome and his first 18 months he always had a rash, seemed to zone out a lot and was not progressing as well as our other friend with Downs. I took him off Gluten and the next day his rashes cleared and he started crawling (we had been working on that for 6 months). Two months later I took him off casen and he showed some more improvement although not as drastic. We had his blood tested 4 months after being off gluten and 2 months after off casen with the following results: Celiac AB Profile Antigliadin Abs, IgA = 2 and IgG = 10. IgE for food allergens (including milk and wheat) less than 0.35. According to many of the posts I have read, if he has Celiac I have to watch his playdough, finger paints, soap and so many things that would make things even harder than he already has it with Downs. I am to the point that I need to know as definitively as possible about the gluten and casen. His GI doc said we can do the upper endoscopy for biopsy to know for sure. IThat means putting him back on gluten. I am afraid to do that - he is in school and it would break my heart to see him regress. I have also been reading about enterolab's stool tests. I don't want him to be on this diet if he doesn't have to be. Please, if you have any insight I would appreicate your time and knowledge. I want to make things easier for him if I can. Maybe one of the allergies were coincidence (maybe that's just wishful thinking, but I need to know for him).
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