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salexander421

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Everything posted by salexander421

  1. salexander421
    So DQ6 (or DQ1) makes the symptoms more severe? That would explain why my girls are so sensitive, why we have to have a completely gluten free house for them to not have any symptoms, and why they can't even tolerate most gluten free foods because of CC. I wish doctors would get on board with this.
  2. salexander421
    I know this is an older post but if you're still around, I would LOVE to know where you got this information...this is exactly what I was looking for. Both of my daughters have this genetic combination and they are both very sensitive to gluten but neither have an "official" diagnosis.
  3. salexander421
    We've had issues with so many different dried fruits but never sunmaid raisins!
  4. salexander421
    Yes! My girls are a little younger, 2 and 3 1/2. Both are potty trained and both have accidents when glutened. We are dealing with that with our 2 year old right now. She has been using the potty 100% for about 3 months now, we have recently had some accidental gluten exposures and she has been having to wear pullups because she's having so many accidents...
  5. salexander421
    If there is gluten in the formula then an infant can most definitely have gluten symptoms, the same way that babies can react to gluten in a mother's diet if they're breastfed. As far as DH goes, I'm not really sure how young it can show up. We suspect our 2 year old has it but I can't remember when it first showed up. I do know that most doctor's will...
  6. salexander421
    My girls have amazing appetites on the gluten free diet! We did a 3 month gluten challenge at the beginning of the year and it was really hard to get them to eat much, especially gluteny stuff. I even tried giving my youngest cookies just to keep gluten in her and she even refused those! You know it's bad when a child won't eat cookies
  7. salexander421
    Sometimes there just aren't any scientific answers, that's what makes it so hard and challenging. And that's exactly why we turn to the experiences of others to help us figure it all out. The truth is there just aren't many, if any, studies being done on any of these issues. If there was it would make it a lot easier. Shauna's list may seem over the...
  8. salexander421
    We have no official diagnosis but to be frank gluten makes me and my two girls sick. My husband has had a really hard time with it and not having an official diagnosis makes it even harder for him. It has taken about a year now but he is finally coming around. Our house was mostly gluten free but he was still eating regular bread in the house. Our youngest...
  9. salexander421
    We've had problems with both. I thought it was maybe another ingredient in them or something then I started getting on (Company Name Removed - They Spammed This Forum and are Banned).com where some people do their own gluten testing on products. Sure enough the purely decadent coconut milk ice cream tested positive for low levels of gluten. I guess it just...
  10. salexander421
    I know! Last time we were at the store I let my girls ride on one of the little toy car shopping carts, I wiped it out really good because there were crumbs in it. Probably won't do that again! The stuff is everywhere!
  11. salexander421
    I agree with mushroom, her IgA is below the range so in my opinion (not a doctor) that would be deficient so you would want to look at IgG numbers instead. That being said, these tests are not enough to rule out celiac...you don't actually have negative blood work, you have insufficient testing. It's so frustrating relying on doctors. We did a gluten challenge...
  12. salexander421
    I know, this frustrates me so much! I went to an expo recently to hear a GI speak who is the celiac expert around here. Everything she said was great but she did make the comment that gluten does not get into breastmilk. I'm sorry but that is wrong! Maybe there aren't any studies on it I don't know, but in my own experience and from talking to others it is...
  13. salexander421
    I just read about this last night. I'm not sure if it's available yet but it is definitely good news for everyone in this situation! Open Original Shared Link
  14. salexander421
    This was my take as well.
  15. salexander421
    Thank you everyone for all your ideas! I think the hardest part for me is not keeping myself safe but keeping my girls safe. I told my husband today that I'm just going to stick them in a bubble! Kidding of course We went to a wedding this past weekend and brought all our own food and we, all 3 of us, got sick. It's so frustrating! I'm taking this advice...
  16. salexander421
    Thank you! I will definitely be googling that one
  17. salexander421
    Oh my gosh, I know! People think I'm just being difficult when I say I can't eat something that's gluten free for whatever reason.
  18. salexander421
    So, for you super SUPER celiacs How do you keep yourself from getting cross contaminated while at friend's and families houses or at a function like a wedding etc.? How do you keep from going crazy when away from your house!?
  19. salexander421
    Thank you so much for your replies! I think my suspicions that it's gluten related are probably right. I knew they were sensitive but I didn't realize just how sensitive! We already don't eat any prepackaged foods other than applesauce, almond butter, coconut milk, and oils etc. I make everything from scratch, we eat only whole foods. No grains, no dairy...
  20. salexander421
    How can you tell if your child is having gluten related joint pain or growing pains? My daughter who is 3 1/2 is always complaining of her ankles hurting. Usually it's just one ankle, the other night she said it was both ankles. She'll cry and say she can't walk. I just don't know if this is growing pains or gluten related joint pain. She is already on a...
  21. salexander421
    She is not diagnosed. By the time we found a doctor who suggested Celiac she had already been on a gluten free diet for some time so they did a genetic test. It came back positive for DQ8. We did a 3 month gluten challenge so we could have her tested. The 3 months was miserable and she was so sick, tired, and pale but she had a negative blood test. If I knew...
  22. salexander421
    Thank you! This is the info I've been looking for
  23. salexander421
    I agree, I wouldn't put my children on a gluten free diet just because they have the genetics.
  24. salexander421
    Even if that is true, and it's not necessarily damaging your villi, it could still cause you to be sick. I believe God knows what's in our hearts. If you don't partake in communion it doesn't mean you have given up on your faith. It's a symbolic act that represents Christ's body and his blood being shed on the cross. The most important thing as a Christian...
  25. salexander421
    Is DQA*0505 half of the DQ2 gene? I've heard of people having half the DQ2 gene which carries some risk for celiac but I've been unable to find any info on that. Thanks!
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