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researchmomma

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Latest Celiac Disease News & Research:

Everything posted by researchmomma

  1. researchmomma
    I am sorry for everything you have been through as well. My daughter has been off gluten officially for two weeks but when we looked back at the last month, she didn't eat much gluten because she wasn't feeling well. She was down to fruit, chicken and a few veggies. However, I think if they decide to do the endoscopy, we will try to gluten her up...
  2. researchmomma
    Yes it is disgusting that I let these doctors rattle me. On the flip side I am happy to know that that lab result isn't important and that she is probably a late bloomer. Thanks for the reassurance that I am not a nutter. I know I come on here for constant reassurance but all of this information is just so overwhelming. I just need help figuring...
  3. researchmomma
    I was just talking to my daughter about the appointment and she said "Mom, that endocrinologists thinks I should be scoped because she said "Why don't we get her scoped for reflux or ulcers; and the standard is to biopsy". So I am not sure if she was placating me and trying to get her on Prilosec or if she believes a scope would be useful. Prilosec...
  4. researchmomma
    Your daughter is old enough to make good choices, however, the school cafeteria may be willing to help her with what is or is not gluten free. She can't be the only person there eating gluten-free. Check that out. I am sorry that you don't have the answers that you seek, however, I would just go gluten-free and see how everyone does. It is worth it...
  5. researchmomma
    Quick background: took my 12 yo to the GI at end of November. Because her blood work for the celiac panel was inconclusive she opted for the gene test which only tested DQ 2 and 8 presence. It was negative so ruled out Celiac and stated that without those genes Celiac wasn't possible. We know from this forum that is not always the case. The GI stated that...
  6. researchmomma
    Life of the party! Exactly. He is bumping into walls with it and my legs....he is so tired of it! Me too! Grandma did well with the gluten-free thing. My Mom is a super healthy eater and she had Jordan on a whole food diet for the two days she was there. She took bought gluten-free pasta and they had meats and veggies. However, I think she went...
  7. researchmomma
    lol! I know you are right. My dog had surgery about 4 days before we went gluten free. He has been wearing that damn cone so he can't get through his doggy door and I am up every night at least twice to let him out. I haven't had a good nights sleep in 2 weeks. I am averaging about 4 hours per night and trying to work and get my kid healthy. Then...
  8. researchmomma
    What a nice comment. I have had a rough week so this was nice to hear. I bet there are loads and loads of moms that do this.
  9. researchmomma
    Like my daughter. AND as I said before there is a large registry study at UCI and they said 5% of the individuals with biopsy confirmed celiac did not have the HLA DQ 2 or 8 genes. She said that is "a lot" of people and your GI should know that.
  10. researchmomma
    Wow, what an open minded individual.
  11. researchmomma
    Mara, I would love the article. I am sorry it took me so long to respond. At a friend's advice I skipped the word gluten free yesterday because it has been all consuming. It was such a nice mental break!!! But I am BACK. Here is what I learned from a researcher that is doing non-HLA studies at University California Irvine: 5% of confirmed Celiacs...
  12. researchmomma
    Thank you! Meal times are absolutely painful. I feel like we are on eggshells.
  13. researchmomma
    My daughter went gluten-free 10 days ago. We did great but then she had a meal last night that wasn't whole foods which we have been trying to stick to. We went out to Pei Wei and she had the gluten free meal. My friend with a child that has Celiac goes there with no problems and he is super sensitive to gluten so we think that was not the culprit. I am...
  14. researchmomma
    My daughter is gluten-free and we are going to try and make our own Annie's Shiitake Mushroom dressing. It is her favorite but unfortunately the only Annie's dressing with Gluten. Go freaking figure! Is there a Ranch that is gluten free?
  15. researchmomma
    Thank you for answering. I hope more do. I had dinner last night with a good friend who is a Dermatologist. I shared my story with her and she said I completely believe there are people out there that are DQ2 or 8 negative with Celiac. She has had 3 patients quite recently that had DH and she sent them to a GI. The GIs did blood work and GI testing...
  16. researchmomma
    I am frustrated by the pat answer: if you don't have the DQ2 or DQ8 genes you do NOT have Celiac. In Europe, they recognize several other HLA DQ genes as Celiac genes. In addition, there has been research to suggest that even if you don't have any of the HLA genes, you can still have Celiac. The GI we go to insists that all Celiac patients have either...
  17. researchmomma
    That is a GREAT idea!!!!! I am going to do that tonight. I have a daily diary but it doesn't encompass everything. In fact, I created my own electronic diary because there was nothing out there that worked perfectly! Thanks once again!!!
  18. researchmomma
    I love the cardboard cupcakes. Made me laugh!
  19. researchmomma
    Well, she eats Eggo waffles each and every day. That only stopped when we moved to Prague, CZ for 2 years and then she ate toast with cinnamon and sugar. My DD has major food phobias because so many things have made her sick. Unfortunately, things that probably didn't make her feel sick get lumped in. So we are starting from scratch here. I had a...
  20. researchmomma
    Thanks to you all. This IS a rollercoaster that is for sure! IH: yes, I remember that about Pamela's. I bought some and we are going to make waffles this evening to freeze for breakfast. The problem is that she has become food phobic over the years and is very attached to her brands. It is going to be a challenge to get her used to eating gluten-free...
  21. researchmomma
    I wish I had taken her to a ND. Thanks for the info. I see you went gluten free in June of this year. How long until you felt better? Or recognized an improvement of some symptoms? Are you off the steroids and DH free?
  22. researchmomma
    WAIT so does your GI consider you Celiac with those genes or not? Or did they agree to a biopsy? My GI will NOT do a biopsy on my daughter. I thought about keeping her on gluten and going to a different GI in a nearby city (all ped GIs here are affiliated with our doctor so that is OUT). Now I guess I am resolved to trying the GFD and seeing if that...
  23. researchmomma
    I was left a vmail that said "your child's gene test was negative for Celiac". I have requested the results be sent to me by email, fax or snail mail. We will see what they say. Thanks!
  24. researchmomma
    we tried the Vans this morning and she spit them out. So we are going to make waffles using Pamela's baking mix and see how that goes.
  25. researchmomma
    Thank you so much. I m On my way to get Danna Korn's book! The first gluten day was hilarious. Let's say I didn't make her an appetizing lunch and she and her friends had a good laugh over it. I won't do gluten lite. I got DH to understand that it will muddy the waters. The hardest part for us is eating out. Any breakfast ideas for kids that...
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