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StephanieL

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Everything posted by StephanieL

  1. StephanieL
    "It's whole wheat flour. Don't worry about gluten!"
  2. StephanieL
    Thanks nsoroma79- I hope you don't think I was prying. My DS who is 7 is currently being evaluated for Chiari Malformation and I have questioned ED for him before too. I was just wondering if they often occur together because you mentioned both. I hope you can stay on gluten long enough to get the testing done. It's hard I'm sure but it would be great...
  3. StephanieL
    I am so very sorry. I wish I had more to say but I do offer hugs! I have a question though, are the Chiari Malformation and Ehlers Danlos connected in some way or do you just happen to have them both?
  4. StephanieL
    Wow, they are willing to put your health at risk to make themselves feel better about themselves? That is messed up and I am sorry they are that ignorant. Unfortunately, with that kind of attitude, I don't think anything you say or do is going to convince them You aren't alone in this. Many people here deal with the "Oh just a little is okay" all the...
  5. StephanieL
    Yeah, that! I think manufacturers are just going to repackage rather than actually keep the gluten-free claim and worry about being "caught" but the non existent government regulators
  6. StephanieL
    A well respected Celiac expert recommended to us 6-8 weeks minimum for a challenge.
  7. StephanieL
    (PLEASE know I am not discounting the terrible issue you had, I just don't want people to completely freak out! lol)
  8. StephanieL
    There was one study and it's fairly old. Not sure if there is any newer research that link them but I haven't found this to be SUPER common in the literature. I don't want people to completely freak out about this. Yes it's scary but again, not common!
  9. StephanieL
    -Sunbutter and gluten-free crackers -hummus and tortillas/brackers -warmed up pasta leftovers -ricecakes -lunch meat sandwiches -fruits -veggies -potato chips/pretzels My DS (who is nut allergic) has a sun butter and jelly sandwich, carrots/celery, fruit and a "snack" pretty much daily. I ask him every day what he wants and he chooses the same...
  10. StephanieL
    I think it's really important to evaluate WHY getting those words spoken to you is so important. Is hearing it more important that going through a challenge that will be very difficult for you? And what if it turns out it isn't Celiac but some other form of gluten issue? Then you go through a difficult challenge for nothing really. If you know you feel...
  11. StephanieL
    Again, the things you are describing wouldn't scream out allergies either. The inaccuracy of allergy testing means it shouldn't be done just to "try and see what sticks" because of the VERY HIGH rate of false positives leading to restricting a diet unnecessarily. Again, 80-50% of skin issues (eczema) are actually not dietary in nature. Also for a challenge...
  12. StephanieL
    If the main issue is a rash, have you looked at DH? That can be biopsied pretty soon after it appears I believe (not the rash itself but an area around it). That's a pretty vague thing though to immediately pull foods. I don't get why Dr's are so quick to pull things before investigating things FWIW, skin issues are very often NOT food related. Soemthing...
  13. StephanieL
    We (a collective we) aren't Dr's here. You need to evaluate what you are comfortable with with the knowledge you have on it. Without knowing what issues were going on that you were attributing to gluten, safety is something you need to determine. What were the symptoms she was dealing with? Is she getting some gluten daily? Does she "cheat' once in a while...
  14. StephanieL
    Yeah. I think you are way overthinking this! It's true that there is a BIG lag in the dx of Celiac disease. You say your daughter has issues with compliance so is she really gluten free enough that the tests wouldn't be accurate? Personally- I would get the genetic test to start since you are in this gluten/gluten free limbo land. It will *almost...
  15. StephanieL
    You need to be honest. It really sounds like you are trying to color the Dr's ideas but driving home the fact that YOU think this is Celiac disease. Have you done the genetics yourself or with your kids? That could really help you know where to even start because MOST LIKELY if this is negative you aren't going to get the dx. you seem to want. Are you...
  16. StephanieL
    Overdue by who's calculations? NORMAL gestation is 38-42 weeks and even then there isn't any need to freak out. As Justlovlie said, the risks of an "overdue" baby aren't anything more than normal. Taking a baby and inductions lead to more issues than an "overdue" baby! As to the OP, I don't know of any correlation of pre/post gluten removal having...
  17. StephanieL
    We get all meds in NEW, UNOPENED bottles whenever we can. They use the same trays and spatulas to count everything all day, all night, week after week , month after month....you get the idea. Pills in multi dose bottles are often large and pills bust open all the time. So if med #1 is gluten-free but passes over a tray where drug #2 was counted you have CC...
  18. StephanieL
    If you are worried then have Chipotle get stuff from the back. And yes, you are not allowed to bring in outside food into many/all establishments. If there were an issue with food born illness they wouldn't be able to track it and whatnot. It is a health department law. Mom's having snacks for the kiddo they usually overlook but bringing stuff in is...
  19. StephanieL
    You're starting to creep me out now!!! lol snort!!!
  20. StephanieL
    I'll come up to supervise you ladies! God only knows what would happen if you came across Fasano in a dark restaurant! Or followed him to his car at the end of the work day! lol Oh come on! I'm sure we can wrangle up a pair for you to borrow! lol
  21. StephanieL
    Alright...now I want to see it!!! Post away! This trip did SOOOOOO much for both of us. It forced me WAY outside of my comfort zone but if I didn't have this push (even though it sucks that we are having these issues) I don't know that I ever would have made the leap! You are so right about what it did for him! I see stuff all the time about kids with...
  22. StephanieL
    Well we still aren't getting anywhere yet... I am waiting (not so patiently ) to hear back from them about our next steps but we shall see. As for the picture...NOOOOOOOOO! We may have to go back and see him again! lol Just out of curiosity though is it one of those "Hey looks who I took this sneaky shot of" picture or was it a posed picture? ...
  23. StephanieL
    OMG! I am SO glad that you did not tell me that story before we saw him or I don't think I could have looked at him with a straight face! lol Yeah, DS's been planning out our next trip since before we even left! At one point he was planning on moving us all there! He was just telling our sitter today about Legal Seafood and how it was the best part of...
  24. StephanieL
    We use Cherrybrook Kitchens mix!
  25. StephanieL
    I don't understand why you would try the gluten-free diet for 3 months (which could mean healing if it is Celiac) and then reintroducing it for a biopsy in another 3. Why not stay on gluten for 3 more months and scope then and THEN try the gluten-free diet? If there is the start of healing during the 3 month trial then going back on may mean you have to...
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