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AGH2010

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Everything posted by AGH2010

  1. AGH2010
    I'm in Santa Monica and have similarly had no luck finding a support group for my 2 year old who is celiac. I was hoping for a playgroup so she wouldnt feel like the only celiac kid out there. I emailed the Celiac Foundation and was told they'd forward my contact but still haven't heard anything. I'm surprised our area has so few groups when other areas ...
  2. AGH2010
    Ha! Love it. I will keep the image in mind to give me strength when I'm ordering.
  3. AGH2010
    Thank you so much for all your responses. I'm wondering now if we might find other problems like you did through the endoscopy... Agh, I'm driving myself crazy trying to decide. But I think we will most likely skip it. I just hope our GI is willing to continue to see us even if we skip it.
  4. AGH2010
    Thank you, all, for your helpful responses. I'm sure I'll get a thicker skin soon enough.
  5. AGH2010
    Hi everyone, I'm still struggling with whether to follow my gut and skip the endoscopy since my 2 year old daughter has tested positive on the EMA test. We're meeting with our original GI tomorrow (have been through 3 of them) and I know she'll push for the endoscopy. My husband and I want her to repeat the EMA just in case the first test was a false...
  6. AGH2010
    Hi everyone! I was wondering if those of you with experience might be willing to share whatever little canned speech you give before ordering at restaurants. I've read about people using restaurant cards but can't figure out how you'd use one without it being awkward. I'm a fairly shy person generally and would appreciate any advice on the practicalities...
  7. AGH2010
    Thank you do much for posting!! I'm struggling with whether to go ahead with an endoscopy for my 2 year old or to just go gluten-free and skip the test. Her blood work came back positive for celiac and showed high inflammation. I've taken her to 3 GIs who say I have to do the endo but warn me that the damage may be patchy so it may come back negative. ...
  8. AGH2010
    Thanks, everyone, especially for confirmation of what I suspected -- that celiac could very well be causing the high ESR. I'm definitely not going back to yesterday's GI. It was very clear that he had a poor understanding of celiac. Just shocking to me that a relatively young GI at a teaching hospital who is very involved in research of GI diseases generally...
  9. AGH2010
    Yes, she had ttg tested as well. Her #s fell under the cut-off for it being positive but I'm told that's not too surprising given how young she is. The GI we saw yesterday is an expert in IBD. When I asked him if the inflammation could be caused by IBD, he said it's very rare at her age and that she would be presenting with a lot more symptoms, not just...
  10. AGH2010
    Ugh, I completely agree with you!!! We still don't have a firm diagnosis for my 2 year old but her EMA test came back positive and all signs points to celiac so I think it's only a matter of time before we embark on the difficult gluten-free road. I've been pretty disappointed by most people's reactions, especially my mom friends who also have 2 year olds...
  11. AGH2010
    Hi everyone, Today I took my daughter to her 3rd GI in 2 months (for various reasons, such as insurance, we've had to look around). Her first GI did a celiac panel and a bunch of other blood tests when she found out my 2 year old has been constipated her whole life. Her EMA test came back positive and she also had a very high ESR (aka sed rate) so she...
  12. AGH2010
    I have the same exact fear! Every time my 2 year old asks for water, I start worrying that it could be the thirsty symptom of diabetes. I'll be so grateful if she only ends up dealing with celiac in her life.
  13. AGH2010
    Thank you to all of you who have responded to my original post! After reading some of your posts, I realized that there was the chance that I'd be separated from my daughter before she was sedated. My first GI had assured me that I'd get to stay with her so I didn't even think to ask the second GI, who was going to be performing the endoscopy. When I called...
  14. AGH2010
    Oh wow, I didn't realize it would be an ongoing process with more scopes in her future. I'm mainly concerned with how she will handle the anesthesia. Hopefully they won't push us out too quickly. How long does the process usually last for you from the time you guys arrive until the time you leave? (I know it's probable different for everyone). Unfortunately...
  15. AGH2010
    Thanks for your words of encouragement. I should be grateful that they caught it so early. But still feels overwhelming - and we havent even gone gluten-free yet! Hope your daughter is doing well!
  16. AGH2010
    Hi everyone, I'm so relieved to have found this forum and to not feel so alone as I grapple with what seems to be an almost certain diagnosis of celiac for my 2 year daughter. She tested positive on her blood test and has a high sed rate (inflammation). The only symptom I took her to the GI for was chronic constipation, which my pediatrician kept assuring...
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