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mamaupupup

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Latest Celiac Disease News & Research:

Everything posted by mamaupupup

  1. mamaupupup
    You have so many of us supporting you! I have twin daughters with Celiac Disease, we have been totally gluten-free for about a month...that is until everytime I discover lurking items--like yesterday in the back of the garage freezer, etc!!! Note: have yourself tested asap before you totally go off gluten! I'm having an insanely difficult time finding...
  2. mamaupupup
    My kids have Celiac and I, (not my husband) am the genetic carrier. When I told my Mom she said, "I don't have to get tested do I?" Note: reading between the lines for her means "I'm in my 70's, so what's the point?" I asked our pediatric GI "What is the point for my Mom?" and she said, "I've seen hunched over elderly folks sit straight up and have a...
  3. mamaupupup
    Yes, I too would like a great mobile app for this site!
  4. mamaupupup

    ARCHIVED Maui

    mamaupupup replied to pshifrin's topic in Gluten-Free Restaurants

    And a Whole Foods too, I think! Thank you!
  5. mamaupupup
    Thinking of you both! Thanks for keeping us posted!
  6. mamaupupup
    Hi Kristen, What a great roommate you'll be! I'm a relative newbie, so stay tuned for more answers...here's what I can offer... Yes, you'll likely be fine nutritionally: I'm a Mom of twin 5 year olds newly diagnosed with Celiac Disease. My husband and I don't seem to be affected, according to current bloodwork, so just the kids need to be gluten-free...
  7. mamaupupup

    ARCHIVED Maui

    mamaupupup replied to pshifrin's topic in Gluten-Free Restaurants

    Thank you! We can hardly wait! We'll be staying with friends half the time and I think we'll try the Westin the other half! Pineapple's on its way!
  8. mamaupupup
    Hi there, So, one of our two daughters with Celiac is also lactose intolerant based on her biopsy results. Biopsy results were: Lactase 2.2 (Abnormal is <15) Sucrase 13.4 (Abnormal is <25) Maltase 56.8 (Abnormal is <100) Palatinase 2.2 (Abnormal is <5). Our GI said the following: - Lactose free milk is ok - Cheese is ok - Yogurt...
  9. mamaupupup

    ARCHIVED Maui

    mamaupupup replied to pshifrin's topic in Gluten-Free Restaurants

    Thanks! We're headed to Maui in two weeks! Where did you stay?
  10. mamaupupup
    My heart goes out to you both! Our twins are younger (5.5), so we currently have a lot of "control" over their ingestion world. Still, I had to take away playdoh in Easter Eggs this past weekend and they were sad. I keep telling myself that everytime I say, "I'm sorry sweetheart, this isn't a healthy choice for you, you can't have this. Let's find something...
  11. mamaupupup
    Agreed--happy they are diagnosed and have the kids focus on being kids! It just feels good to "do" something! I also am thankful the GI seems thorough!
  12. mamaupupup
    Thank YOU!
  13. mamaupupup
    My twin daughters have Celiac...and I'm starting my testing for Celiac... ...and my girls are IVF/ICSI/PGS babies (there was NO way I'd have gotten pregnant without LOTS of intervention...which also contributes to the suspicion that I have Celiac). For what it's worth, we LOVED Dr. Schoolcraft at Colorado Center for Reproductive Medicine. His statistics...
  14. mamaupupup
    Hi All, I learned some new things today from a follow up with our rockstar Ped GI: Measuring bone density in Celiac kids: - She tests all Celiac kids between ages 8 - 10 for bone density - She uses a CT scan and scans multiple areas including legs and spine - She compares the results to a database of children of the same age and ethnicity...
  15. mamaupupup
    Agreed! Thank you all for all you contribute!
  16. mamaupupup
    Hi there, I'm not sure where you live, but if you are near LA, consider seeing Dr. Pietzak at Children's Hospital in Los Angeles. She is a Ped GI AND Celiac researcher. I personally believe the researchers get it more than anyone -- they thrive on figuring out this disease! We don't live in LA and have found it worth the long trips to see her. In...
  17. mamaupupup
    I just emailed our GI. Here's her response: "The amount of possible gluten in pills is likely not an issue. However, the liquid is gluten free for sure." She's going to reorder so we can get the liquid version.
  18. mamaupupup
    From Rxlist: lansoprazole (active ingredient) and the following inactive ingredients: sugar sphere, sucrose, methacrylic acid copolymer, low substituted hydroxypropyl cellulose, starch, magnesium carbonate, talc, polyethylene glycol, titanium dioxide, polysorbate 80, hydroxypropyl cellulose, colloidal silicon dioxide, D&C Red No. 28, FD&C Blue No...
  19. mamaupupup
    Thank you so much for this info. That is brutal!!! I even had the pharmacy mark her account as Celiac/gluten-free. Ugh! Maybe THAT's why her behavior was so off today!!!! Thank you!
  20. mamaupupup
    Hi there, One of our girls' endoscopies also uncovered "redness" in a section of the stomach lining. The GI is calling this gastritis and prescribed Prevacid (a drug which lowers stomach acid production). The GI has instructed us to give this medication for three months. Opinions? Thoughts? Experience? Would love to hear it! Many thanks in advance...
  21. mamaupupup
    Hi there, The best thing to do, in my opinion, is to print out the "Am I the One" pdf from the Celiac Disease Foundation website. Highlight the symptoms you have. Write up a page of notes detailing each symptom for you and make an appointment with your doctor. Have the doctor write up a celiac panel requisition for the lab and get your bloodwork done...
  22. mamaupupup
    Yes, it could be a smore! And, yes, I have a crazy mood-swing celiac kiddo. She too is the most loving little girl...until...gluten. She gets super physical and has very little impulse control when she has gluten. Hang in there. Glutenologist and others are more experienced than I, so definitely follow their leads! And, there are good graham crackers...
  23. mamaupupup
    P.S. One of our daughters has a false negative on ttg the first round of her Celiac bloodwork. We repeated it 3months later and it was twice as high...few false positives, but a good number of false negatives on that test, to my knowledge. Hang in there!
  24. mamaupupup
    Hi there, We LOVE Dr. Michelle Pietzak at Children's Hospital in Los Angeles. She is a Celiac researcher and ped. GI. She does cover all GI issues. She is at 323-361-2181. I know it's a long drive from Modesto, but could be worth it. If that doesn't work for you, try calling the City of Hope for a good lead. They are working on a Celiac study and...
  25. mamaupupup
    Also, I just want to add that the greatest nourishment on the planet is a mother's unconditional love. We were recently at Children's Hospital in LA and saw so many children with so many different conditions. The greatest sight of all for me was to see how much love surrounded all these precious little ones. Every child was shown kindness and love--I just...
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