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e&j0304

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Everything posted by e&j0304

  1. e&j0304
    Thanks for the info and I'd love to hear what your ped GI has to say!
  2. e&j0304
    Chrissy, what are those other things that can cause elevated IgA? I have always wondered and have never found my answer...
  3. e&j0304
    Thanks for all the advice, Angie! I appreciate it! We are looking forward to our trip. My little 4-year-old girl is going to have the time of her life!! How exciting!! Thanks again!
  4. e&j0304
    I have tried to read as much on here as I can find about Disney and it seems like they do a great job with gluten free foods. This is our very first trip to Disney World and we have 2 children (ages 2 and 4) who follow a gluten free diet. We are going in September. Should I request a gluten-free foods list to be mailed to my house? Should I make special...
  5. e&j0304

    (con't) and now they want to wait another 3 months...that is half a year already. Follow your gut instincts on this. I would find a new doctor - check out http://www.thyroid-info.com/topdrs/index.htm if you haven't already.

  6. e&j0304

    also - interestingly, when they do treat you for hypo, most docs aim to get your tsh to 1 or under...so...3.7 and even 2.62 could well be too high for her...esp. in light of her symptoms. Also - have they checked her for Crohns? It is NOT normal for a child to have the symptoms that you speak of and it is essential to figure out what is going on with her asap. she was first tested 3 months ago

  7. e&j0304

    Hi, E. I'm new to this board. I was just diagnosed with hypothyroid earlier this year. It took 4 endo's to figure it out. I urge you to be aggressive in re: to your daughter. IMO it is absurd for the doc not to be addressing her thyroid issues during this time when she is developing. Good luck!

  8. e&j0304
    Thank you all for the advice. Her dr. called today and said that they want to test her again in another 3 months. They will do antibody testing at that time to determine if she has Hashi's. Hopefully we will find out one way or another if there is something really wrong with her. I really appreciate the advice and support!
  9. e&j0304
    Thanks for the advice, Georgie. She has not been tested for anything other than TSH and Free T4. She was tested about 2 or so years ago for FISH levels? I'm not sure what that is but they said it was normal. It's frustrating because I think drs. think we're crazy. I know that it's not normal that my 4 year old's hair was falling out in clumps and is...
  10. e&j0304
    Ok, so here's the deal. My little girl was tested 3 months ago for suspected hypothyroidism. Her labs were: TSH 3.7 and Free T4 0.6. The dr. wanted to wait and retest her so we just did that and her new tests results are: TSH 2.62 and Free T4 1.2. So last time her results were borderline abnormal. Her TSH should really be under 3 for sure and we would...
  11. e&j0304
    If he has reflux that could be making him wake up at night as well. Some kids have reflux without us really knowing it. It's called "silent reflux." My son has a pretty severe case of this and also wakes up many times during the night crying. Food issues as far as texture and refusal to eat are also signs of reflux. I'm glad you got in with the GI...
  12. e&j0304
    I think that the benefits to finding out the information during an endoscopy FAR outweigh any potential risks. Most people do completely fine with the anesthesia and if you have a good dr. they should be able to find the damage. If that is all negative then I would absoloutely do a trial of the diet. I agree with Ursula that it only makes sense to try...
  13. e&j0304
    I was talking about the lactose test, not the gluten one. The poster before me was questioning why her GI didn't know about it and asked who ran it. Sorry for the confusion!
  14. e&j0304
    My friend's child had this done and I believe his gastro ordered it and he went to the hospital to actually have the test run. HTH
  15. e&j0304
    The Kinikinick (sp?) mixes are AWESOME. I always use those for cakes and cupcakes. Also, like someone else mentioned, some bakeries do make gluten-free cakes. Our local chain, Hy-Vee, does gluten free cakes. If it's just a small party I would definitley try to do it ourself though if you can. It would be less expensive that way. I actually make a Thomas...
  16. e&j0304
    It sounds like your son could definitley have celiac disease or a gluten intolerance. I realize that the cost of blood work or other tests can be a consideration but if your insurance covers it or if you have the money to spend I highly recommend going that route. If the tests are negative you can always try the diet. However, if you try the diet first...
  17. e&j0304
    It sounds like she could have it but you won't know until you get her tests back. That short amount of time off of gluten will not change her results. The test results can be unreliable in little kids however and I hope she at least got the complete panel run. Good luck. She may be gluten intolerant without celiac so if the diet helps her, don't discount...
  18. e&j0304
    And then there's my son who does have symptoms who tested negative in all areas through enterolab. Go figure. I really don't trust that they accurately diagnose people with gluten sensitivity. I also have a friend who's child tested neg. for tTG through enterolab and tested positive months later in his blood after being gluten-free!! So there goes their...
  19. e&j0304
    I think that you should remain on a regular diet until your appointment with the specialist in April. Try to eat gluten every day. That is the best way to get the most accurate testing. Hopefully they will just do a biopsy at that point. Conditions other than celiac can cause your high scores from enterolab. Hopefully Rachel will see this post and respond...
  20. e&j0304
    Well I think you have very good reason to suspect celiac. His tests at the moment do not indicate celiac, but that is not to say that he is not gluten intolerant and could develop celiac in the future. The problem as far as getting him to stick to the diet is likely that a teenage boy won't care whether he may or may not develop something in the future...
  21. e&j0304
    I totally agree with that. I believe that gluten intolerances are very serious as well but it important for him to know exactly what he is dealing with.
  22. e&j0304
    Is he the one that had only his IgG elevated? I think it was you that posted on a different board. If that is the case I think the best thing that you can do for your son is to see a dr. who knows exactly what the test results for your son mean. His elevated IgG alone really does not indicate celiac disease. This is not to say that he isn't gluten intolerant...
  23. e&j0304
    The latest GI we saw said that an elevated IgG can be caused by gastritis. I would see another dr. or maybe have his tests re-run. I wouldn't definitely NOT be leaning toward celiac disease with those test results. You can do a quick search for "causes of elevatd AGA IgG" or something like that and see how many other conditions can cause an elevated...
  24. e&j0304
    Thanks. I will keep a close eye on him tomorrow and see how he does. I gave him a dose mixed in apple juice 1/2 hour before dinner and he refluxed the entire time he was drinking it. He spits up in his mouth and swallows it back down... Then he kept refluxing after dinner as well. I'm not sure what to think. I hope this works. I want to avoid any...
  25. e&j0304
    Thanks for all the info. I went back and talked with the pharmacist today and he said that many children do very well on this drug and some don't. We won't know until we try. We did give it to my son today and he seems ok so far. He spit his last dose out all over the floor tonight though so I guess he didn't get much. I forgot to ask the pharmacist...
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