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MomandDadtoOGS

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About MomandDadtoOGS

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    New Jersey
  1. Does anyone here know of a kid allergic to lemonade?
  2. We were not a gluten-free household until my daughter was dx'd in October. My husband was dx'd in 2002 so he always just ate his diet and I ate whatever I wanted. We fed our daughter everything b/c her prior two tests were negative. Even at just 3 years old this month, she knows she is different. We call it "special," at our house. She'll ask, "Is that special food? Can I eat it?" With two celiacs in the house, it is just way easier and safer to all be gluten-free. It's much harder for the extended family to deal with. At our house we are now requiring all foods brought in and served here to be gluten-free. At everyone else's house, I bring food for us and we eat whatever we can that is gluten-free that is being served. I also have started buying new kitchen items that will be used now and started disposing of stuff that touched gluten to much in the past-- new cookie sheets, new spatulas, etc.
  3. When the Ig panels were run in August, our daughter's all came back within normal range. Our immunologist ran just about every one out there for us. She had her ttg done on 10/27/06-- 480! Our Ped GI/lab uses anything under 20 as normal. Her biopsy was done the same day and showed significant damage to the small intestine. Her symptoms were: belly pain, gastroparesis, GERD, and frequently loss/gain of weight w/o diarrhea.
  4. I just wanted to say that I thought I was the only person gaining on this diet. I do not have Celiac but my husband and 3 year old daughter do so I am trying extremely hard to stick to their diet and I only prepare gluten-free food now. I have gained about 5lbs in the past month. The extra sugar and butter plus the assorted flours are killing me. I just spent the past 3 years losing a considerable amount of weight. I am going to need to try to perfect some recipes using the fat-free butter type products and maybe splenda or something. Even my 3 year old has gained 3lbs in the last 7 weeks since her diagnosis!
  5. If anyone is looking for a Pediatric GI-- We use Dr. Janice Kelly at CHOP and are very happy with her. She's very interested in Celiac Disease. There is also a Dr. Verma there who runs some support groups and community events for families. My husband uses a GI dr. at Presbyterian Medical Center in Philly-- Dr. Su. She's very nice but not a Celiac specialist.
  6. What's the highest ttg level anyone has ever heard of? I thought my daughter at 480 was crazy!
  7. Are Yummy Bears the same as Gummy Vites? They are little bears too. I got ours at the local BJ's Warehouse Club and paid like $7.99 for 220 of them.
  8. Holy moly! I just saw that mannitol on there! That makes me crazy b/c we just went to the nutritionist about 1 month ago and were told to go and buy these right away.
  9. Centrum Kids are gluten-free. Our nutritionist just put my daughter on them after her celiac diagnosis. They come in Spongebob and Dora, 180 in the bottle I think. Kids under 4 take 1/2 vitamin per day. I know that GummyVites are also gluten-free. We had been using them but the nutritionist told us that celiac disease kids need magnesium and zinc in their diets and that the other vitamins on the market don't offer those particular minerals.
  10. My husband actually was just telling me that same info about the not before 4 months and not after 6 months study.
  11. Hi Katie- I personally would do the biopsy if the ttg was that high and with the known relationship between JD and celiac disease. Our 3 year old just had the biopsy done on 10/27 and it wasn't that bad at all. The IV was the worst part. She was only in the procedure for about 7 minutes and was running around by the time we left recovery. We did ours through CHOP and had a great experience. I'm actually scheduling a GI appt. for myself after seeing her handle it so well.
  12. We were told to give our child all foods that "normal" kids her age were eating even though my husband was diagnosed with Celiac about 6 months before my pregnancy. We are a gluten-free household now. We plan on having more children and will have them tested as well so that we know if they truly have celiac as well but think we will have a gluten-free household even at that time. We will consult with our ped. GI to see exactly when to introduce glutens to our future children b/c they have to have some exposure to get a positive test.
  13. I would personally have the testing done. I'd rather know for sure. The blood test really isn't that invasive and although endoscopy with biopsy is no picnic, if it can help prove one way or the other if your children have celiac, I'd do it. I didn't hesitate having it done when our ped. GI ordered it for my child's GERD. I'm so glad I did know b/c her GERD has resolved but we were able to 100% confirm celiac. If I didn't do it, our child would still be eating "regular" foods and not growing. As hard as this has been on us, it's also been a blessing to discover this now when she's 3 and not at 23 like my husband did. Heck, my FIL is 59 and just had a positive antibody test 2 weeks ago. Maybe my perspective is different b/c I'm going to be a nurse. I just like knowing things for sure and with medical tests to prove it.
  14. I just saw my daughters pediatric GI who specializes in Celiac. She said normal TTg is <20. My daughter was dx on 10/31/06 by blood and biopsy. Her TTg level was 480. Her endoscopy showed significant damage to the small intestine. She just turned 3 on 12/10. We had her tested at 14 months and just 6 months ago and those times were negative.
  15. I'd probably take her back in if she still can't gain and keep the weight on. Maybe there's an underlying other issue. Our daughter was dx on 10/31/06. She's been gluten-free since that day and has gained 3lbs and grew 1/2 inch in that time. The dr's were thrilled with her progress. We go back in 6 months for followup again. Good luck and hope she can start keeping some weight on.
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