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e&j0304

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Everything posted by e&j0304

  1. e&j0304
    ok, so are you all basically telling me that she didn't have the appropriate tests done?? I am so frustrated with doctors right now that I'm not sure I'll ever be able to trust one again. I know in my heart that Ella at the very least has a gluten sensitivity based on her response to this diet, but it would be nice to get a medical professional to agree...
  2. e&j0304
    Thanks, Katie. I was wondering about that. This doctor stated that the test he was doing was 95% accurate in diagnosing celiac. Was he right? I just cannot believe the change in my daughter after being on this diet. There has to be something to the diet change. We are not putting her back on gluten, but just need to find a doc who will work with us...
  3. e&j0304
    I just wanted to let you know the results we got in the mail today. I am so frustrated because in the doctor's clinical notes he just keeps stating things like, "The parents report....but it was not noticed in the exam" It was almost like he was saying we were making all of this up! He also kept saying that Ella was obese or would become obese. This is...
  4. e&j0304
    Thank you all so much for your words of encouragement. Ella is still doing remarkably well and we are so happy to see her playing and happy. Of course we still have our ups and downs a little bit, but it is undeniable that she is much, much better than she was prior to being gluten-free. I called the ped. GI office yesterday and spoke with the doctor...
  5. e&j0304
    I just want to let you all know that Ella is doing extremely well on the gluten-free diet and I want to thank you all for your advice and support. You were all so kind and encouraging, not to mention full of very useful information! Ella has been gluten-free for an entire week and the changes in her are nothing short of a miracle. She is playing and...
  6. e&j0304
    I have a question about the risks of playdough. Is it only a problem if it is ingested or can it cause a reaction just from touching the skin? I know they play with it at Ella's preschool and I want to be prepared to either buy some safe dough to donate to her class or to make some to donate. I was just wondering...I don't think Ella would ever eat...
  7. e&j0304
    Thanks for the encouragement. Today has been ok. Not as good as it has been, but also not as bad as it was pre-gluten-free diet. We'll see how the rest of today goes I guess. Tonight we are going to a birthday party for my nephew and I am nervous that she's going to get something she shouldn't have. There are always plates of food laying around and...
  8. e&j0304
    Thanks for replying. So far today she has been cranky and asked to eat the second she woke up. I am so bummed out right now. I really hope that this was just a contamination issue and not that her good behavior the past few days was just a fluke. I was so excited about this diet and now I'm really bummed. Hopefully we can get her back on track. ...
  9. e&j0304
    Thank you, Nisla! You have been so helpful, as has everyone here, and it's been such a source of encouragement for me to come here. I hope little Cheyenne likes Kindergarden!! I'm sure she'll do great there. I totally agree with you about the doctors. I just want to go to her old ped. (we just switched to a new one) and tell him how well this is working...
  10. e&j0304
    Tamara, Thanks for your post. Emmie's story has been inspirational to me since I think her symptoms were so similar to Ella's. I am glad that Emmie is continuing to do so well! This has just been such an amazing change. Everyone who sees her now can tell how different she is. My husband and I are in awe. Today we went to an indoor park and she cried...
  11. e&j0304
    I just wanted to let you know that your son sounds a lot like my daughter. We have been going around and around with doctors trying to figure out what is wrong with her and hadn't really gotten anywhere until a relative who's a pediatrician suggested celiac. I got an appointment with a ped. GI for her last week. He didn't think it was celiac, but ran a...
  12. e&j0304
    Thanks for the advice everyone. I will definitely get her her own toaster today. I have another question. Does anyone know if Pillsbury Icing (for cakes and stuff) is safe? I need to make a safe cake for her. I can't even begin to tell you how well she is doing on this diet. She is a different kid! She has done SO well the past two days. It really...
  13. e&j0304
    I guess the title pretty much says it all! I was wondering what you all think about ketchup and mustard. I have heard conflicting info on those. My daughter loves to "dip" her food in ketchup and I just want to make sure that's ok. Are there any other types of gluten-free things she can dip stuff in? We have been on the gluten-free diet for ...
  14. e&j0304
    Thank you all again for your suggestions. It's interesting that someone stated this could be allergies. I thought that Ella had allergies at about a year old because her face would break out in red splotches (not hives) after eating things like cottage cheese and yogurt. However, she was allergy tested and the test did not indicate she had a definite allergy...
  15. e&j0304
    Thanks again everyone for the kind words and encouragement. I feel so much better after reading your posts! I really hope this will work for her. Lucy, I live in Iowa and Hy-Vee is huge here. I found a lot of food on their website and I'm assuming that's the list that you have. It is 51 pages long! I will be sure to ask the pharmacist for help....
  16. e&j0304
    Thank you all so much for your support. I feel better after reading what you wrote and we have decided to go ahead with the gluten-free diet to see if it helps Ella. Nisla, thank you for the e-mail and for the support. It really means a lot to me to know that there are people who care and are willing to help! I just went shopping for foods for Ella...
  17. e&j0304
    I just wanted to give all of you an update on Ella since you were all so helpful when I came here with questions initially. I posted a thread a couple of weeks ago (Coud my Daughter have Celiac) and got lots of good advice. We went to see a ped. GI today at a university hospital and he pretty much said that he's sure Ella does not have celiac. He did...
  18. e&j0304
    I have some good news. Ella will be going to see the GI doctor in 2 weeks on Aug. 2nd. That is a lot sooner than I thought she would get it so we're happy about that. Maybe now we can get some answers. What should I expect from this visit? Should I expect that they will run some tests on her while we're there. This doctor is in another city so I'm...
  19. e&j0304
    Well, we just got back from Ella's ped. office. I am discouraged right now because her doctor did not seem to think she has celiac and did not want to test her for it. I guess since she doesn't have the classic symptoms (vomiting, diarrhea, etc.) then she probaby doesn't have it? Also, Ella has grown slowly, but it seems that she should be SO much bigger...
  20. e&j0304
    I was just wondering what I should do with Ella before she's tested so that we get the most accurate results. Should this be done after fasting (first thing in the morning) or after eating gluten during the day? I kind of want them to test her glucose levels again and I know they want her to fast for that so I suppose they would draw all the blood at...
  21. e&j0304
    Thanks again for all of your replies. I am so happy to have found this board since I have received so much advice and support. I am encouraged that Ella may be able to be helped with a gluten-free diet after hearing some of the stories on here. We have an appointment with her pediatrician on Monday to talk about testing, so hopefully we can get that...
  22. e&j0304
    I just have another question for you ladies. Do you think that after I implement the gluten-free diet I can expect her to stop whining and crying about eating all day long? This is my biggest problem with her and the cause of all of our anxiety over this. I just wonder if she is still going to crave food or if she will crave the food she can no longer...
  23. e&j0304
    Thank you all so much for taking the time to post. I am so glad I found this message board. I know that Ella doesn't have all of the "classic" symptoms of celiac (diarrhea, vomiting, nausea, not wanting to eat etc), but she does many other symptoms and from what I've read some people can have no symptoms at all so that's why I really feel like she needs...
  24. e&j0304
    I have a 2 1/2 year old daughter whom has had many problems in her short life. I want to give as much of a brief history as I can. Ella has suffered with "behavioral problems" from infancy on and as an infant would want to nurse around the clock and would never let anyone hold her but me, including her father. She would scream for hours on end until...
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