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AGH2010

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Everything posted by AGH2010

  1. AGH2010
    Hi all, We will be flying in from California with my 3 year old daughter, who has celiac. We will be landing in Newark around 7pm and am planning on making a trip to Whole Foods to stock up for our week in the Poconos. A real meal after spending the day on the plane and at the airport would be great. Wondering if anyone has experience with any restaurants...
  2. AGH2010
    Thanks so much for your reply! I just looked up the cafe you mentioned -- it says it's over 40 minutes away from where we will be! I didn't realize the Poconos area was that large. (Excuse my ignorance). We're going to be in Dingmans Ferry, which I understand is a very small, desolate town. Any chance you might know of anything closer to that area? ...
  3. AGH2010
    Hi everyone, We will be spending a week at a lake house in the Poconos later this summer with my 3 year old, who has celiac. It will be our first time in the area. I wondered if anyone had any store or restaurant suggestions anywhere in the area. We are flying into Newark, and I was planning on stopping by a Whole Foods in NJ to pick up supplies on...
  4. AGH2010
    Hi all, I'm hosting my daughter's 3 year old birthday party from 10a to noon in a few weeks and was hoping for some food suggestions. It's the first party I'm hosting since her celiac diagnosis. There will be about 15 kids and 25 adults. So far, I've thought of doing a fruit salad and a make-your-own-granola bar w yogurt, granola and a few berries....
  5. AGH2010
    Our GI, a celiac expert, said constipation takes the longest to go away on a gluten-free diet, up to 6 mos at least. It's been 5 mos for us and whenever I try to decrease my daughter's Miralax, her constipation returns. Our GI also said that her constipation could be unrelated to her celiac. Not very encouraging for us. But wanted you not to worry if you...
  6. AGH2010
    Do you mind me asking which doctor you take your children to? I've tried 3 pediatric GI's in the LA area and haven't found anyone who seems particularly knowledgable about celiac. As a result I've been taking my daughter to see a pediatric celiac expert in San Diego but would obviously love to find someone closer. As to the original post, I'm constantly...
  7. AGH2010
    That's very interesting about the vaccine. But requiring a formal diagnosis would keep people like my daughter from getting it. She's not yet 3 and her bloodwork came back positive. Her biopsy was negative. A celiac expert in San Diego told us that 2/3 of kids with positive blood work will develop celiac within 2 years if they keep eating gluten. She recommended...
  8. AGH2010
    Thank you all for the great ideas! Really appreciate it.
  9. AGH2010
    Hi everyone, My daughter's class is having a hot chocolate party on Tues and the parents have been asked to bring finger foods. I'm not much of a baker but wanted to make something gluten-free that would be tempting enough for my daughter so that she wouldn't notice all the gluten-y baked goods. I'd love any and all suggestions! Thank you!!
  10. AGH2010
    Sorry I don't have any suggestions but wanted to say my daughter has been gluten-free for 5 mos now and also takes laxatives (milk of magnesia in our case) and still only has a bowel movement once every 2-3 days. I was really hoping going gluten-free would help w her constipation but it doesn't seem to have made a difference at all. And like your son, she...
  11. AGH2010
    Thanks for all the replies, everyone! Happy to report that yesterday went very well. But it probably really helped that all the other kids got mini cupcakes and she got a regular size one -- so if anything, she lucked out. My friend was very thoughtful and used that big cupcake along with two smaller ones as the cake that the birthday boy blew out so...
  12. AGH2010
    This may seem silly but I'm feeling very anxious because we're going to a close friend's last minute birthday celebration. It will be the first time my almost 3 year old confronts eating different cake from her friends. I had time to run over to the store and get a ready made gluten-free cupcake. And luckily I have frosting left over from a cake I made for...
  13. AGH2010
    Still waiting for one to open in LA! (I'm not counting the raw food restaurants because we're on the gluten-free diet for my 2 year old daughter's sake so those raw food places won't cut it). We go to the gluten-free bakery about once a week for fresh bread and cupcakes. Wish they'd sell sandwiches too.
  14. AGH2010
    Thanks, everyone. That list is very helpful. I feel silly for not having googled before posting my question. I thought I had read that candy canes were usually off-limits in the early days when I was reading up on celiac and never bothered to follow up - just assumed the worst. I'm so happy that there will most likely be tons of variety from which to pick...
  15. AGH2010
    Hi everyone! This will be my daughter's first Christmas on the gluten-free diet and she's already talking about candy canes. I know most are off limits. I was wondering though of people had experiences from years' past - will I be able to find gluten-free candy canes in places like Whole Foods or health stores? Or do I need to plan ahead and order some? ...
  16. AGH2010
    Thank you SO much for your response. I'm so much less anxious about the trip now. We're in LA so I'm already familiar w PF Changs and BJ - glad to know they are up there too. We are hoping to make a short trip to Tahoe too do thanks for that. Now I can limit my worrying to how dismissive my mother-in-law will be about my daughter's new diet. Thanks...
  17. AGH2010
    Hi there! I got excited when I saw the word Sacramento on the subject line. We will be spending a week up there for the holidays, visiting my in-laws. It is our first trip there since my 2.5 year old's diagnosis. If you wouldn't mind me asking, do you have other restaurant recommendations in the area? I'll be scouring the Internet before our trip but thought...
  18. AGH2010
    Thanks for sharing your nutririonist's advice. Makes a lot of sense. We haven't had our first follow-up antibodies test yet, and while I try to be very careful about what my daughter eats, I have no idea if I'm being strict enough. Your advice makes me feel better about waiting to see if our common-sense approach might enough before I drive myself crazy with...
  19. AGH2010
    We just got back from our first trip to a hotel with my 2 year old. Asked the hotel for a microwave, which they provided, and they also agreed to freeze a few items for us. It was a drag having to ask them to retrieve it and put it back each time but better than nothing! Good luck.
  20. AGH2010
    Wanted to share what we learned from our 2nd opinion with a pediatric celiac expert. My 2.5 yo tested positive on EMA and ttg igg but biopsy was negative. Our original dr thought it meant no celiac and celebrated. The celiac expert said the official term for her was "potential celiac". Gave me a few studies that show that 1/3 of potential celiacs will go...
  21. AGH2010
    Thanks for the tip! We're higher up north in Santa Monica but it's always good to know of places in the vicinity for when we find ourselves down there.
  22. AGH2010
    I just wanted to assure you that your emotions are totally normal. We first got our daughter's bloodwork back in May and learned about celiac. She was asymptomatic for the most part (figured her constipation was typical toddler constipation like most doctors assured us). We didn't have her scoped until a few weeks ago, so didn't start our gluten-free adventure...
  23. AGH2010
    Thank you for sharing your story. I wonder why so many doctors accept a normal biopsy as meaning you're free to eat as much gluten as you like when the bloodwork shows a different story.
  24. AGH2010
    Our 2.5 yo was scoped 2 weeks ago. I was so nervous. But it went by so quickly and effortlessly. She never complained of any pain or soreness at all. As far as celiac, you'll have to wait on the biopsy but our doctor did mention that overall things looked good so I think they can report on the general state. Good luck! Hope it goes as smoothly as...
  25. AGH2010
    I'm really curious about kids who tested positive but with normal biopsies who do not go gluten-free because my 2.5 yo just tested positive on igg and ema but normal biopsy. When you say gluten lite, how lite do you mean? I'm sorry to hear that your son eventually got celiac. I can't help but think it would be inevitable for my daughter, which is why we...
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