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e&j0304

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Everything posted by e&j0304

  1. e&j0304
    Mike, Actually, Ella's absorbtion score was only 51 and so was normal. This was after 2 months of a gluten-free diet, so I'm not sure if that affected anything. She was obviously not absorbing her food properly pre-gluten-free since she was always so hungry and wasn't gaining weight no matter what she ate. Also, her hair is falling out so much and...
  2. e&j0304
    Thanks again everyone. Yes, Ella is getting new hair and she has a little "peach fuzz" on top of her hair where it's coming in. It is kind of wierd because it seems as though only the top of her hair is affected. The back seems to be fine. That's what worries me. I am afraid she's going to lose what little she has left on top and we'll have to cut it...
  3. e&j0304
    Rachel, Thank you for your insight. Sometimes I just don't know what to think anymore about anything! I guess maybe I'm just spending too much time online trying to figure all of this out. I do trust our new dr. and I hope that she's right about Ella's hair loss being from malnutrition. At this point I'm not sure I can handle there being something...
  4. e&j0304
    We're trying over here, but it's been a slow transition. I don't know any good gluten-free recipies yet and Ella just basically eats hotdogs, sandwiches, and cereal for meals. Along with fruits and veggies and milk of course. She has always hated pasta and really hates gluten-free pasta. We also grill out a lot and she eats chicken. My husband tried...
  5. e&j0304
    That's so sweet! I love hearing stories like that. I hope Ella is that lucky in school someday! I hope she's enjoying Kindergarten.
  6. e&j0304
    I'm so sorry that little Emmie got so sick. That's so sad and frustrating for you since you'd gone so long with her doing well. I hope she bounces back sooner this time than she did last time. I know what you mean when you say you were a little frustrated with your husband. I think that sometimes I feel as though no one can watch over Ella as well as...
  7. e&j0304
    Yes, Rachel. Her labs are as follows: Thyroid Stimulating Hormone 2.75 uIU/ML Thyroxine-Free 1.34 NG/DL This person on the dermatology site thought that Ella's TSH was too high as most people's is around 1. She said that there are new reference ranges with anything over 2 being suspect and 3 being high...I don't know anything about that though. ...
  8. e&j0304
    Also, if you read on the first post on that link...my husband started typing that post and I finished it. It's confusing because it states "my wife has thin hair" and then I sign it. Just didn't want to confuse anyone!! Ok...I'm done correcting myself tonight. Time to go to bed
  9. e&j0304
    I messed up on the title and in my post. I meant to type HYPOthyroidism. Sorry!!
  10. e&j0304
    I have been very concerned about Ella's hair loss and the fact that it doesn't seem to be getting better. Her new dr. thinks it's just caued by malnutrition from the gluten intolerance, but I was wondering what a dermatologist would think so I posted the question on a dermatology forum. The responses I got are making me think that Ella may have a thyroid...
  11. e&j0304
    Thank you for posting that, Debbie. That was very helpful to me. Also, thank you for your reply, Mike. I hope that we caught this soon enough in Ella that she won't have any other major problems. I hope you're feeling well and I hope you have a wonderful time in Thailand...I'm jealous! Matilda, thank you to you as well. You are absolutely right...
  12. e&j0304
    Thanks everyone for your insight. Erika, I wish you the best for little Caroline. I hope you get all of this figured out. You will find lots of good advice and support on this website. Obviously I'm new to this too and have learned so much from the people on here. To answer your question, Ella has been gluten-free since Aug. 3rd, so a little over 2 months...
  13. e&j0304
    Stephanie, does Ella have double DQ1? I don't know why this is so confusing for me, but it is! I got an email back from enterolab today and they stated that people do not outgrow a gluten sensitivity and it can be just as damaging as celiac disease. She said that that theory is not yet accepted by the medical community. Just thought I'd let you know...
  14. e&j0304
    Heather, I am kind of new here too and don't have anything to add to what everyone else has told you since you've already gotten great advice. I second what everyone said about getting tested. At least then you'll have something to go on. I'm not sure how much stock you can put in it if it's negative though since she's so young. My daughter's blood...
  15. e&j0304
    Thank you so much for your opinions on this. I have a quick question. Ella's test says "HLA-DQ Gene Molecular analysis: HLA-DQB1*0602, 0604" What does that mean? What is the * for and does she have two of the genes because it says 0602, 0604 or not? I am confused by this. Thanks again for helping me through this. I guess this is the negative...
  16. e&j0304
    Today I got Ella's test results from Enterolab. I just wanted to share them with you all since you've all been so helpful to me through all of this. Here they are: Gluten Sensitivity Testing Fecal Antigliadin IgA 23 Units (Normal Range <10 Units) Fecal Antitissue Transglutaminase IgA 17 Units (Normal Range <10 Units) Microscopic...
  17. e&j0304
    My daughter has been gluten free since August 3, 2005. Along with many other symptoms of celiac a big one was her hair loss. Her hair was falling out and when her baby brother pulled it it would come out in clumps and she would not even feel it. Her dr. said it was likely because of the fact that she wasn't getting enough nutrients due to the gluten intolerance...
  18. e&j0304
    Thanks for the gluten-free candy list. I was starting to wonder if there weren't very many kinds of gluten-free candy to choose from since so many on here seem to dread the candy at halloween. Is it just that candy in general isn't healthy so that's why you wouldn't want to hand it out? I am just wondering as it is our first Halloween since going gluten...
  19. e&j0304
    I am going through the very same thing right now with my little girl, so I feel your frustration and anxiety over all of this! I wrote a letter to the director of the school as well as Ella's teachers. I also printed off some info about Celiac Disease so they knew what it was, since I don't think most people know. As another posted did, I also bought...
  20. e&j0304
    I don't really have an answer to your question, but my daughter's new doctor also mentioned CF and said that if Ella continued to have growth problems and wasn't continuing to get better with the gluten-free diet that we would test for CF. She mentioned that Ella's stools seemed like those of a person with CF because they were very grainy and almost sand...
  21. e&j0304
    I have another quick question about vitamins. I did buy Ella some of the Gummy Vites today and she loves them. However, they do not say that they contain any iron. Ella's hair was falling out (I assume from lack of iron) and she was anemic. Since she is presumably absorbing more nutrients now since being gluten-free, does she need a vitamin with iron...
  22. e&j0304
    Flinstone's Vitamins aren't gluten-free??? I thought those were ok and I've been giving them to Ella. I have been searching for a week now trying to figure out what little bit of gluten I think she's been getting and I guess it's probably those. Does anyone know for sure if they're ok or not? Thanks!
  23. e&j0304
    Thanks, Laurie. You are totally right, she is able to play normally with other children now and for that I am very thankful. She still has her moments of irritability and fussiness, but what 2 1/2 year old doesn't, right? Ella is SO much better now than she used to be and food is no longer controlling her thoughts and her ability to function socially...
  24. e&j0304
    tarnalberry, you are completely right in saying that I am lacking confidence in my observations. I also agree with ILOVEOMC. The fact that Ella is so young and I really can't know how she feels is what makes this harder. I can't argue with the fact that she's doing so much better, but I still wonder. I think it's also because Ella didn't have the "typical...
  25. e&j0304
    Kaiti, Thank you. If you have time to post the link, that would be great. If not that's ok too. After all, I've alreadt ordered these tests so I guess it makes no difference whether others think I should have done it! Ever since I found out here that my daughter didn't have the full panal run I've been wanting some more definite answers, Anyway,...
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