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jayhawkmom

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Latest Celiac Disease News & Research:

Everything posted by jayhawkmom

  1. jayhawkmom
    The box of KIX we have had "wheat starch" in the ingredient list.
  2. jayhawkmom
    Thank you! I'm really not trying to argue or debate, I'm really just trying to understand. Thus far, no one has been able to give me any reason why my kiddo's IgA levels were so wonky. Though, one person told me that it's associated with diabetes, and that scared the bejeepers out of me. deviation, I hope that we are able to help you out.... I really...
  3. jayhawkmom
    56% tie - huh?? Unless I'm really stupid, if both got 56%, that would be 112% and that would mean that none of the others got ANY votes. That's just ridiculous, pure crap.
  4. jayhawkmom
    That link confuses me even more... but also says the same thing, there really is no explanation for "over the limits" Total Serum IgA. My son had a similar issue. TOTAL IgA was "over the normal limits" but all other results (AGA's, tTg Ab's, EMA) were all within range. I was told it was just a "fluke." And, there was no further offer of explanation.
  5. jayhawkmom
    We took our Celiac daughter to a Pediatric Orthopedic Surgeon this afternoon due to complaints of leg and hip pain. This doctor was recommended by our Pediatrician's office. The surgeon confirmed that our daughter's left leg is a tiny bit shorter than her right... but, he asked about her "entire" medical history. I could not see how it was relevant...
  6. jayhawkmom
    I'm pretty sure that the Total IgA is just run to make sure there isn't selective IgA deficiency... and that there really isn't a "positive or negative" range for TOTAL IgA. There is a "normal" range, but outside of it doesn't make it positive or negative, it means it deficient or "not." Right?? Or, am I mistaken...and it's a positive tTg IgA?
  7. jayhawkmom
    My 6 year old just had her 2nd scope last Friday. Honestly... it's not very invasive at all. Since my daughter has numerous food allergies, she had it done in a pediatric OR at a children's hospital. However, under normal circumstances, it's a procedure that is so simple and routine that it's often done in a GI office. Granted, it's really scary to have...
  8. jayhawkmom
    For me, yes... the biopsy was an easy procedure. I had it done in my GI's office... I had an IV of medication that would cause "conscious sedation" - but I don't remember anything. He said I was awake and watching for part of the time, but I really have no recollection. My daughter had a repeat EGD on Friday. It took 10 minutes... they took multiple biospies...
  9. jayhawkmom
    I am not nearly as knowledgeable as most of the folks here... but, I do know that antihistamines aren't going to make any difference in Celiac. Celiac is an autoimmune disorder, not an allergy. The antibodies created by Celiac are not IgE mediated antibodies - as the case with food allergies, so I don't think it would have any affect on the Celiac panel...
  10. jayhawkmom
    I'm surprised that no one has answered your question yet! An elevated IgG AGA doesn't necessarily mean Celiac. Though, it's certainly associated with it. I had similar test results. My IgG AGA was 69 - and less than 11 is considered within range. My IgA AGA was 6, less than 11 is within range. Did they run tTg antibodies as well? I'm assuming no, since...
  11. jayhawkmom
    Usually, there are reference ranges listed in the lab reports... in ()'s - and the numbers lower than the top number is considered "normal." If you post the numbers and the references ranges, we can help you. If there aren't reference ranges listed... it'll be pretty difficult to tell what "normal" is. (each lab has a different set of reference ranges...
  12. jayhawkmom
    I've read all the replies...and I don't really have an answer. But, I do know for certain that the "artificial butter flavor" used in the movie theaters DOES contain gluten. So, it's off limits. Just thought I'd throw that in....even though it's not really relevant to the topic.
  13. jayhawkmom
    I really think it depends on who you are, and what kind of answers you are looking for. There is information on Enterolab's site that tells you how to determine which tests you should consider. Personally, I've already had blood testing and an EGD - so I went with the gene testing, I didn't need the other tests.
  14. jayhawkmom
    I certainly don't mean to tread on the thread... but, does anyone have any clue what it means when the IgA levels are far off the other end.... much *higher* than the normal range? That happened with my son, who was 8 at the time of his testing. The high end of the reference range was about 100 LESS than what my son's actual level was. I've never found...
  15. jayhawkmom
    Play Dough. Granted, that's obvious... hindsight. But, my daughter was playing with playdough in school - I didn't know that. One day I could smell the trademark playdough smell on her hands. At first, I thought very little of it, as I know she's not EATING the playdough. But, alas... it has been making her sick. She now has about $35.00 worth of gluten...
  16. jayhawkmom
    I'm searching, endlessly, for a gluten-free cracker that is also soy, dairy, egg, and nut free. I realize I'm probably never going to find this particular item, but I thought I'd ask. Thanks, in advance!
  17. jayhawkmom
    I wasn't going to post because I didn't think it would be a "big deal." And, judging from the fact that there are numerous views and only one response, I think I was right. But, since I made one person happy... I'm glad I posted. I really was shocked when I heard positive remarks about Enterolab, as thus far... none of our doctors have had anything nice...
  18. jayhawkmom
    How nice that the folks at Rice Dream are so lagging in maintaining their website. Geez. We use Westsoy Rice milk. Pacific when we can't find that.
  19. jayhawkmom
    Yesterday my 6 year old (Celiac) daughter had pre-anesthesia testing as she has to undergo another EGD on Friday morning. She's 100% compliant with the gluten-free diet, but something still isn't "right" and they are trying to rule out and/or find other issues. While discussing her issues with the physician's assistant, I was asked about my GI issues...
  20. jayhawkmom
    Oh good!! I can't wait to get ours. I ordered the bucket - I should have just ordered one to try it out, but I bought without thinking first. It sounds like she'll really like it, though!! Are the mini-containers tiny - like the size of the "sample" playdough containers? Or... larger?
  21. jayhawkmom
    Ya know what?? I always chew the same kind of gum, but the store was out of my preferred brand the other day. So, I bought something different. Without reading the ingredients (I know... BAD) I shoved a piece in my mouth and began to chew vigorously. Within minutes, my entire face was itchy - and my throat felt tight. I'm fairly certain that I've...
  22. jayhawkmom
    Wow. I'd say those results are pretty conclusive. If it were my child, I'd bypass the EGD. If there is a valid reason why you need that "all out gold standard confirmation" then by all means... have the biopsy. But, in order for it to be accurate, the doctor is right... gluten will have to stay in the diet for the time being. With those bt results...
  23. jayhawkmom
    Yep, I'm totally aware of that. I was just hoping that perhaps... on a long shot, *something* at a fast food restaurant *might* be ok. FF usually isn't my first choice, but DH was heading there this evening - and I was hoping he could bring me back something. No desire to cook this evening. Ahhhhhhh well.
  24. jayhawkmom
    Anyone have any clue whether or not these are gluten-free?? I've searched high and low online, and BK doesn't even list them on their website. They are listed under "regional favorites" and show nutritional information, but not ingredients. Just curious to see if anyone has any confirmation on their gluten-free status. Thank you. (corn tortilla, meat...
  25. jayhawkmom
    Honestly, I am not sure that there are any true tests for intolerances, other than dietary trials. I very well could be wrong, though. I've had allergy testing done more than once, and my children have all had allergy testing done, two kids had complete food panels. Gluten was not something they RAST tested for, nor was it something they did skin testing...
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