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stacytr

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Everything posted by stacytr

  1. stacytr
    More info here: Open Original Shared Link As someone pointed out earlier and according to this article, the problem isn't rice in general, but rice in the USA that's the problem. It's basically grown in the South and California. You might want to check/email/call where manufacturers get their rice from (and then post here!)
  2. stacytr

    ARCHIVED SoCal Ped GI's

    stacytr replied to stacytr's topic in Doctors

    I realized that I hadn't updated here. Emma had her endoscopy in late July. The results came back less than a week later -- she is definitely celiac. She has gained 3 pounds this last month+!! (This is after not gaining anything this last year) She has also measurably grown too (but I can't remember by how much). I am so thrilled for her (though she's heavier...
  3. stacytr

    ARCHIVED Going Back To The Doctor

    stacytr replied to kittty's topic in Doctors

    Just remember that if the blood tests being ordered include a celiac panel, that you need to be consuming glutton for some period of time for the blood test (or an endoscopy) to be valid.
  4. stacytr
    My kids both nursed till they were 4, and were delayed in eating solid foods. We are currently pursuing a celiac diagnosis for my daughter, but I'd be willing to bet that the reason she's doing so well despite her very high lab #'s is the protective benefits that nursing provides. WTG to your mom!!
  5. stacytr
    I just wanted to update -- this is my post from my doctor thread. Ok we had our appointment with Dr Liu at the Arcadia extension of Childrens Hospital Los Angeles. First impressions: I REALLY liked him. He was kind, good presence, gentle with Em. He really listened and really answered our questions. I had printed off the stuff about the new guidelines...
  6. stacytr

    ARCHIVED SoCal Ped GI's

    stacytr replied to stacytr's topic in Doctors

    Ok we had our appointment with Dr Liu at the Arcadia extension of Childrens Hospital Los Angeles. First impressions: I REALLY liked him. He was kind, good presence, gentle with Em. He really listened and really answered our questions. I had printed off the stuff about the new guidelines -- he read them through and gave a thoughtful response. He talked about...
  7. stacytr

    ARCHIVED SoCal Ped GI's

    stacytr replied to stacytr's topic in Doctors

    Interesting -- maybe they've changed things? I told her that Emma was positive on her celiac panel from her bloodwork. I told her I could give her the #'s over the phone if she wanted. She said to bring that in, but that the GI would be the one to officially diagnosis. So it seemed that as far as CHLA was concerned we were not yet confirmed Celiac.
  8. stacytr
    Thanks -- Em's not actually very thirsty or really peeing a lot -- she just FEELS like she has to pee a lot (so a lot of urgent feelings without a lot of output). But when they tested her for UTI they also looked at sugar and said it was fine. I will definitely let them know though. I didn't know there was a connection between diabetes and celiac. We...
  9. stacytr

    ARCHIVED SoCal Ped GI's

    stacytr replied to stacytr's topic in Doctors

    Thanks so much for letting me bombard you with questions. We have a CHLA authorization and when I called they said that Dr Pietzak would only see us if we were confirmed celiac. The receptionist booked us with Dr. Liu and said a lot of positive things about him when I grilled her about him. Hopefully Emma's case will be more straightforward than your daughters...
  10. stacytr

    ARCHIVED SoCal Ped GI's

    stacytr replied to stacytr's topic in Doctors

    Ok -- sorry -- last one I swear! I just don't know anyone else who knows anything about GI docs! Are you familiar with any of these docs at CHLA? (Arcadia extension) Chuan-Hao Lin, MD Quin Liu, MD Jaya Punati, MD Ardath Yamaga, MD
  11. stacytr

    ARCHIVED SoCal Ped GI's

    stacytr replied to stacytr's topic in Doctors

    Mamaupupup! I was on the phone a lot today -- with CHLA and then our medical group trying to determine if Dr Pietzak was a covered specialist. Finally I just called our pediatrician's office and asked if we could be referred to the CHLA extension right here. They said YES! They couldn't guarantee that we'd be able to see Pietzak -- but we can try. Thanks...
  12. stacytr
    I just find this a little bit funny -- Em doesn't eat that much compared to other kids on any diet! But thanks for your feedback -- that helped me
  13. stacytr
    Oh I am sorry you had to go through that with your daughter! It's so scary when little ones have to be hospitalized! I SOOO appreciate the support and lack of judgement. We have decided to go ahead and do the scope -- and have reintroduced gluten. It was a tough call and we went back and forth -- but the idea that a definitive diagnosis might be helpful...
  14. stacytr
    You can also had a little bit of blackstrap mollasses to oatmeal (gluten free). It's very high in iron. My daughter only liked table foods as a toddler so you could also cut into strips some gluten free nuggets or just some chicken pieces. Dipping sauces make them fun too (if a bit messy). Basically everything was finger food for mine when she was little...
  15. stacytr

    ARCHIVED SoCal Ped GI's

    stacytr replied to stacytr's topic in Doctors

    Ok new question. Would you recommend any of the CHLA ped GI's? I spent an hour on the phone this morning just trying to find out if she was a contracted specialist with our medical group. So far, the most I've gotten is that we can petition to get her, but usually the way these things go is that they turn it down if there's someone else in network. I was...
  16. stacytr
    Thank you! I was wondering if I was being too dramatic about reintroducing gluten when we had just taken it out. There is a bit of a sense that I am hurting her on purpose And Em is teeny -- 36 pounds at 5 1/2. And one of her symptoms is urinary frequency/urgency -- I feel so bad for her It was starting to get better being off for a few days. Well I guess...
  17. stacytr

    ARCHIVED SoCal Ped GI's

    stacytr replied to stacytr's topic in Doctors

    Thank you mamaupupup. Do you know if the doc you are recommending takes Blue Cross HMO? We have to go through our pediatrician for services to be covered. I would love to see her though!
  18. stacytr

    ARCHIVED SoCal Ped GI's

    stacytr posted a topic in Doctors

    I'm wondering if anyone has any experience with 2 different pediatric GI's in southern California. We were assigned (HMO) to a Dr. Bahar in Encino. He gets good reviews on healthgrades but he's far away from us. He also told me in no uncertain terms that no matter what my daughter's lab results (she has very high #'s) that false positives exist, and we...
  19. stacytr
    We have an appointment next Tuesday with a pediatric GI. (We have to go all the way to Encino from Pasadena -- sigh). I spoke with him on the phone, and he said it didn't matter what her #'s were, that false positives were possible and that he disagreed strongly with any standard that didn't include endoscopy. He said to go back on a gluten diet till he...
  20. stacytr
    I already know the ped won't diagnose her -- she's very by the book and already told me she must have the biopsy and needs to see the GI. Sigh. We've only been off gluten for a few days -- if we can get in fast, do you think we'd have to go back on gluten for the EMA? (I know that's probably a question for the GI -- I just don't know if s/he will be any...
  21. stacytr
    For #2 (EMA) does she need to be back on gluten to get a good/meaningful result?
  22. stacytr
    Gotcha. Dr told me that for the first 2, normal is 0-19 For the second 2 normal is 0-3 Does that help?
  23. stacytr
    Ok just got off the phone with the dr -- here are her #'s: deamidated gliadin IgA 108 deamidated gliadin IgG 96 ttrans IgA 100 ttrans IgG 4 general/regular IgA count (to make sure her numbers were normal) 301 I asked about EMA (what is that?) and apparently they didn't test it. So should I request another blood test for the gene and EMA?
  24. stacytr
    My daughter's pediatrician called me on Friday and said that the celiac panel on her labs all came back positive. She said we
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