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mamaupupup

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Latest Celiac Disease News & Research:

Everything posted by mamaupupup

  1. mamaupupup
    Hi there, I'm relatively new, so I can offer a teensy bit here: 50% of Celiacs are considered to also be lactose intolerant, at least at the outset of going gluten-free.
  2. mamaupupup

    ARCHIVED Doctors Who Have No Clue

    mamaupupup replied to BabsV's topic in Doctors

    Hang in there! I have a 5.5 year old who had severe nighttime joint pain for three years--two pediatricians called it growing pains, to which I said, "nope--it's something more." I suggested we test for Celiac and one said, "That Gluten Free Thing is a fad." She spent about half her life in pain because doctors didn't step up. I finally pulled her off...
  3. mamaupupup
    Quick find! Nice job! Feel better!
  4. mamaupupup
    Fun thread! We ripped out our front porch flowers since Twin A has a bee allergy and built raised beds. We planted about three weeks ago: - Sweet mint - Basil - Cilantro - Strawberries - Tomato - Spinach - Sweet lettuce (?) - Swiss Chard - Broccoli - Sugar Snap Peas The girls make us minty water for dinner and they are snacking...
  5. mamaupupup
    Hi there! Thinking of you! Quick note since I have to go get kids to bed...I had all four in our family tested. The entire Celiac Panel cost $28 WITHOUT insurance. With insurance I paid $2.80 for each of the four of us. It's been worth every single penny!!! Thinking of you!
  6. mamaupupup
    That makes so much sense--if the kids are fine at home and vacations, it must be school! We are at the very beginning of our gluten-free path, so I'm anxious to learn from you and others. Please let me/us know what the solution ends up being for your kiddos! Thinking of you all!
  7. mamaupupup
    Hi there, I worry about this because my kiddos are so little--5.5 and we've decided to homeschool this year in part because I'm skeptical about the school's ability to provide a safe environment. ...meanwhile we discovered the fish food for our tropical fish has gluten--who would have thought?! Is there any chance they are feeding pets food that has...
  8. mamaupupup
    To add a little: I like having a Ped GI who is a Celiac researcher--Dr. Pietzak listens to every crumb of input we give her. She's like a detective. We drive 2 hrs+ each way to see her. Dr. Hoffenburg in Denver is a researcher. Here are some of his publications--he's on it! I'd choose him in a second! 2.Screening-identified celiac disease: who...
  9. mamaupupup
    And, here we go...talk about a responsive doctor...ours is excellent From a VERY good source: One of the main celiac disease centers is in Denver, Co. The best physicians to see are either Dr. Ed Hoffenburg or Dr. Edwin Lui. Here is the info: Open Original Shared Link Open Original Shared Link Given the excellence in care we've received...
  10. mamaupupup
    I'll ask our Ped GI from Children's Hospital LA (Dr. Michelle Pietzak -- she's a researcher, on the board of Celiac Disease Foundation, etc.). She has mentioned that there is a higher incidence of Celiac in Colorado than in Southern California, so she has some connection. If there is a R.O.C.K. group in the area, that might help in identifying, also...
  11. mamaupupup
    I'm thinking of you all! That must be so difficult! Try to get your son to at least get your grandson's blood tested annually...one of my girls had a rising TTG (just shy of a "positive"), which caught my attention and the attention of our awesome pediatric GI. Also, hopefully your son/dil can find a ped GI to help the little guy with his tummy issues...
  12. mamaupupup
    you have the PERFECT attitude! You'll be alright! Thinking of you!
  13. mamaupupup
    I have twin 5.5 year old girls--both with Celiac. They each have their own set of different symptoms. One of the two girls eats NONSTOP! And, at 5.5 she weighs a whopping 34 pounds with her clothes and shoes on! Yes, that sounds familiar. I spend so much time prepping snacks, making meals, etc... I'm so sorry to hear that the Mom isn't on board. ...
  14. mamaupupup
    Hi there, Welcome! Our twin girls, now 5.5, were just diagnosed with Celiac. Our Ped GI intends to follow up with bone density testing for our girls when they're 9 or 10. She plans to do a thorough CT scan of legs and back and then compare them to otherwise healthy kids' scans of the same ethnicity. She asked us to make sure our kids do weight bearing...
  15. mamaupupup
    Hi there, I agree that it doesn't seem that all the tests are listed. Maybe there were more? Also, positive is positive...generally. It's kind of like being "sort of" pregnant. All in all, my best advice is to find the very best pediatric GI you can within driveable distance (although I would fly if I had to). We found an excellent Ped GI by asking...
  16. mamaupupup
    I agree with Sylvia and others that a gluten-free diet can be healthy, depending on what is eaten. Our pediatric GI who is also a Celiac Disease researcher believes "no one needs gluten to be healthy." Also, BOTH our pediatric GI's (one is in our hometown, the other is at Children's Hospital LA) have set us up with consultations with nutritionists....
  17. mamaupupup

    Mom to fraternal twin girls with Celiac Disease.

    10/2010 Suspected Twin B had issues with gluten (itching and severe nighttime joint pain). No doctors would test!

    12/2011 Convinced allergist (my childhood friend) to test

    4/2012 Confirmed both girls with celiac disease

    Currently gluten loading around town (not in our gluten-free home!) so I can test!

  18. mamaupupup
    Hi Everyone, Hope you are all doing as well as can be! Hope you enjoy a light gluten free story... My husband has a tropical saltwater aquarium. He was a bit annoyed when I asked if the flake fish food has gluten. He thought there was no way it did. A few days later he proudly held up new cans of gluten free fish food declaring that all of his previous...
  19. mamaupupup
    So sorry to hear that! Yes, I know! I love the Applegate products--but they really do look TOO alike. I'm going to email them because I could have been in exactly your shoes! Here is their email in case you want to also: help@applegate.com Hang in there!
  20. mamaupupup
    I totally agree about a natural diet. Fortunately our kids eat out of our garden and from the fruit trees multiple times a day. Pasta does find its way in...and Udi's pizza dough. I'm also finding that aloe juice is really helpful for our little girl with gastritis!
  21. mamaupupup
    Hi all, It seems like everywhere we go there is facepainting for kiddos. Do you worry about gluten in the facepaint? Thanks for your thoughts!
  22. mamaupupup
    Yes, we have a saying in our house, "Celiac with a Smile." Thinking about you! The only thing worse about having to do labs twice is when you have to take a 35 pound 5 year old in because the pediatrician forgot to check all the boxes...I feel for you too! Hang in there! It's great to get info!
  23. mamaupupup
    Yes! It's possible to get sick from gluten even before you go gluten free and anytime afterwards. We have twins with Celiac Disease and each child responds differently even to the same exposures. On the other hand, my husband and I blame everything on gluten--and joke about it . It is often difficult to tell what is truly to blame. Just do your...
  24. mamaupupup
    Yes! Welcome! I have twin daughters with Celiac...we now celebrate by making ice cream cakes! I take a springform pan and we crumble yummy gluten-free cookies for the bottom layer, then add a layer of ice cream (usually lactose free vanilla), smear on a layer of chocolate fudge sauce, then add another layer of ice cream. The girls love decorating the top...
  25. mamaupupup
    Wow! Pastry Chef! That IS and uphill battle. The great thing is IF he does embrace it, he will have the opportunity to make such an incredible impact on so many people's lives! I did read somewhere of a woman who went to a famous pastry school and has Celiac Disease...if I remember who that was, I'll post it! Hmmm...on to other approaches! Thinking...
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