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mamaupupup

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Latest Celiac Disease News & Research:

Everything posted by mamaupupup

  1. mamaupupup
    Hi there, I have twin tiny 5 year olds (32 and 34 lbs) who will in all likelihood be positively confirmed Celiac next week. I know the agony of worrying about them and not wanting to poke them! I can't interpret the results other than to pass along that our specialist, Dr. Pietzak at Children's Hospital LA, emphasizes that 30% of the population has...
  2. mamaupupup
    Thanks everyone! What do you think about the wooden knife block? Vaccuum it out? Get a new one?
  3. mamaupupup
    Thank you! I'd love to know what you did to clean out the house! Beyond ridding the house of gluten-foods and playdoh, what kitchen utensiles, etc. did you replace? What did you wash?
  4. mamaupupup
    We have twins who will in all likelihood be confirmed Celiac next week. We also are scouring our house for gluten (we're going to have an entire house gluten-free since we have at least 50% of the family being identified as Celiac) Questions and plans we have are: - how long does gluten stay "alive"? - what does it take to kill or inactivate gluten...
  5. mamaupupup
    I'm so glad to hear your primary doctor was on this! That's great! I'd call him/her tomorrow and see if he/she has a report and can fill you in! I will do my best to follow up with you later this week: I'm going to ask an adult friend who is Celiac and I'll also ask our cousins (parents of the two) what they've had for follow up. If it helps...
  6. mamaupupup
    Great point about Aveeno and the Oatmeal...running to check now...you are RIGHT!!! My tube of Aveeno has oat in it. Their number is 866-428-3366, I'll call tomorrow! Thank you for pointing that out! I need to add to my list of "purging" items is to check the bathroom! coconut oil is unlikely to have gluten...thank goodness! On aggressive...
  7. mamaupupup
    yay movies! My newest favorite gluten-free munchy: Bangkock Sweet Chile Rice Chips by Snapdragon. Our kids love Pirates Booty (but I think it has corn, so double check the ingredients list). For a more healthy choice I love jicama slices. Jicama can be sweet and crunchy and has lots of water in it! Jicama, like carrot, is a root, so I'm not sure your...
  8. mamaupupup
    Hi there, We are a week out from going gluten free...and I'm starting the purging process. Would love to know what is necessary to do to have a gluten-free home! What is necessary? What is over the top? Here's my list of things so far: - Go through cupboards and fridge and clear out anything with gluten in it - Toss/give away anything that we double...
  9. mamaupupup
    Hi there! Wow this is frustrating! We are about to do our twins' endoscopies at CHLA with Dr. Pietzak (ped. GI/Celiac specialist/researcher) next week. Here's what she has outlined for us: - Endoscopies next week - Two weeks later an hour appointment per child to discuss management - Multiple re-checks (I don't know what that means yet) - Annual appointments...
  10. mamaupupup
    Hi Carol! Thanks for your compassion. The funny thing about twins is that on some levels it's twice as hard and on other levels it's twice as easy. We have had a bizarre rollercoaster Celiac diagnosis ride where we've thought one had Celiac and the other didn't and vice versa. Frankly, it will be easier for everyone if they both have Celiac--and I think...
  11. mamaupupup
    Hi there, This is a bit indirect, since I'm going to give you the story of my 34lbs 5 yr old, but for what it's worth... 2/1/11 I pulled DD off gluten, not knowing she had to be on gluten to test accurately...after 2-3 months her symptoms improved significantly so I kept her off gluten for the most part (I'd say 80% gluten-free) 8/1/11 I found out...
  12. mamaupupup
    We searched for a long time to find a great doctor in Southern California. For anyone within driving distance of Los Angeles, we highly recommend: Dr. Michelle Pietzak, M.D. Childrens Hospital Los Angeles Gastroenterology & Nutrition (323) 669-2181 4650 Sunset Blvd Los Angeles, CA 90027 www.chla.org Dr. Pietzak (aka "Dr. Pizza" to our girls...
  13. mamaupupup
    Hi there, We have twins both likely will have final diagnoses of Celiac in about 10 days. One has major behavioral issues (impulse control, irritable, whiney, clingy, etc.) and the other is a total peacemaker/zen kid. Both have positive bloodwork and genes...and both are symptomatic in different ways. We are eagerly awaiting the day 3/20 when we can take...
  14. mamaupupup
    We are in your shoes too! We have twins with endoscopies scheduled for 3/20. I'm nervous too! The girls are excited to get pictures. One of the girls wanted to make sure that the string the camera is attached to can't break (who would want an errant camera floating around in them???!!!). I love the guideline of telling them a day in advance for each...
  15. mamaupupup
    Hi there! Thinking of you and your DD. I agree with the others: call to get an earlier appointment. Tell them she has lost 12 lbs in three weeks and that you think her health is deteriorating quickly. Waiting for our appointment--it took me six weeks just to get on the list for an appointment--was one of the greatest stressors in this whole process...
  16. mamaupupup
    Thank you so much! Our girls are also 5.5 and about to complete our diagnosis of Celiac. We have 10 more days of gluten in our world: our twin daughters will have their biopsies then. The minute we're done at the hospital we will purge gluten from our lives! I love all the info and tips you shared. And, I'm so happy to hear how the school has responded...
  17. mamaupupup
    First, you are a GREAT mom for doing all you're doing. Hang in there! And, yes, do what you can to stay on gluten until you test. And, yes, it's excruciating! We are currently where you are from children suffering standpoint: kids who are in pain, itching, and acting out/acting horribly. We have twin 5 year olds who are likely to have a definitive...
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