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About e&j0304

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  1. Thanks for the info and I'd love to hear what your ped GI has to say!
  2. Chrissy, what are those other things that can cause elevated IgA? I have always wondered and have never found my answer...
  3. Thanks for all the advice, Angie! I appreciate it! We are looking forward to our trip. My little 4-year-old girl is going to have the time of her life!! How exciting!! Thanks again!
  4. I have tried to read as much on here as I can find about Disney and it seems like they do a great job with gluten free foods. This is our very first trip to Disney World and we have 2 children (ages 2 and 4) who follow a gluten free diet. We are going in September. Should I request a gluten-free foods list to be mailed to my house? Should I make special requests over the phone or is it ok to just ask when we get there? What about Character dinners....I don't want my kids to feel left out. We are doing dinner at Cinderella's Castle, Chef Mickey's Breakfast buffet (twice), a Princess Dinner at Epcot and maybe one other Character dinner although I haven't booked it yet. How many character dinners are too many, do you think? We will be doing the Disney parks for 5 days. We are going to have a fidge in our hotel room. Can I buy things there to keep in our room since we're flying? I am the most worried about breakfast because they LOVE their gluten-free cereal, bars, waffles, etc. that I'm sure they won't be getting at WDW. Thanks for any insight that anyone has. I'm glad we've started planning this trip now. It's overwhelming for someone who's new at this! Shannon
  5. (con't) and now they want to wait another 3 months...that is half a year already. Follow your gut instincts on this. I would find a new doctor - check out http://www.thyroid-info.com/topdrs/index.htm if you haven't already.

  6. also - interestingly, when they do treat you for hypo, most docs aim to get your tsh to 1 or under...so...3.7 and even 2.62 could well be too high for her...esp. in light of her symptoms. Also - have they checked her for Crohns? It is NOT normal for a child to have the symptoms that you speak of and it is essential to figure out what is going on with her asap. she was first tested 3 months ago

  7. Hi, E. I'm new to this board. I was just diagnosed with hypothyroid earlier this year. It took 4 endo's to figure it out. I urge you to be aggressive in re: to your daughter. IMO it is absurd for the doc not to be addressing her thyroid issues during this time when she is developing. Good luck!

  8. Thank you all for the advice. Her dr. called today and said that they want to test her again in another 3 months. They will do antibody testing at that time to determine if she has Hashi's. Hopefully we will find out one way or another if there is something really wrong with her. I really appreciate the advice and support!
  9. Thanks for the advice, Georgie. She has not been tested for anything other than TSH and Free T4. She was tested about 2 or so years ago for FISH levels? I'm not sure what that is but they said it was normal. It's frustrating because I think drs. think we're crazy. I know that it's not normal that my 4 year old's hair was falling out in clumps and is not not growing at all. We have pictures of her at the age of 2 and her hair is almost EXACTLY the same length. It has grown maybe 1/4 in. in 2 years with NO haircuts. That can't be normal. She also struggles terribly with constipation and they just want me to give her a laxative... Anyway, thanks for your help. I hope we can get it figured out!
  10. Ok, so here's the deal. My little girl was tested 3 months ago for suspected hypothyroidism. Her labs were: TSH 3.7 and Free T4 0.6. The dr. wanted to wait and retest her so we just did that and her new tests results are: TSH 2.62 and Free T4 1.2. So last time her results were borderline abnormal. Her TSH should really be under 3 for sure and we would like to see it below 2.5. Her Free T4 was obviously low at 0.6 but is now completely normal. What do you make of that? She is on no meds. Her symptoms include hair loss/thinning/no growth, short stature, protruding abdomen, aching legs, cold skin, mottled-looking skin (red/purplish lacy pattern on her skin). Apparently this is all normal and ok... She is currently in the 5% for height and 60% for weight. She is so short compared to other kids her age. I am 5'9 inches tall and my husband is 6'4. Our son is above average in height. We were all above average in height as children. What would you do with these new results? Should we just let it ride for another year and see how she does? I already feel like a crazy parent because she didn't want to run these tests in the first place and I think she was shocked that they came back borderline high last time.
  11. If he has reflux that could be making him wake up at night as well. Some kids have reflux without us really knowing it. It's called "silent reflux." My son has a pretty severe case of this and also wakes up many times during the night crying. Food issues as far as texture and refusal to eat are also signs of reflux. I'm glad you got in with the GI. He should be able to figure it out. I say that a little hesitantly because we've had our fair share of TERRIBLE Gi's but we cannot possibly be the norm and I'm sure yours will be fine. Good luck to you!
  12. I think that the benefits to finding out the information during an endoscopy FAR outweigh any potential risks. Most people do completely fine with the anesthesia and if you have a good dr. they should be able to find the damage. If that is all negative then I would absoloutely do a trial of the diet. I agree with Ursula that it only makes sense to try to get the diagnosis first and then try the diet so the parent and child aren't left with the "Well maybe we should have done it...." thoughts. It is not at all easy to put a sick child back on gluten just for a challenge. Also, there are other conditions other than celiac that could be affecting that child. He deserves to have every possible chance of receiving a diagnosis if it's something he will have to deal with for the rest of his life... JMHO
  13. I was talking about the lactose test, not the gluten one. The poster before me was questioning why her GI didn't know about it and asked who ran it. Sorry for the confusion!
  14. My friend's child had this done and I believe his gastro ordered it and he went to the hospital to actually have the test run. HTH
  15. The Kinikinick (sp?) mixes are AWESOME. I always use those for cakes and cupcakes. Also, like someone else mentioned, some bakeries do make gluten-free cakes. Our local chain, Hy-Vee, does gluten free cakes. If it's just a small party I would definitley try to do it ourself though if you can. It would be less expensive that way. I actually make a Thomas the Train cake for my son's second birthday out of gluten-free cake mix and it was so adorable. Good luck! Shannon PS We also only make one cake but our parties are pretty small. If you're having a huge party I don't see a problem with making a gluten-free cake maybe for all of the kids and then a regular one for adults or something because the gluten-free cake mixes are expensive.
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