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StephanieL

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Everything posted by StephanieL

  1. StephanieL
    It is exceedingly rare to not have the genetics. As BlessedMommy is very aware on these things, wouldn't retesting IF there were S&S even if the genetics would happened to not be there be more helpful than having to do gluten challenges every x number of years and risking her health as there have been issues with the challenge in the house?
  2. StephanieL
    From everything you are talking about, I don't seen signs of IgE allergies which is what an allergist would test for. It isn't recommended to test for allergies unless there was a KNOW and specific reaction to a specific thing. Blanket testing is not the recommended practice as even IgE allergy testing leads to many false positives (upwards of 50%). All...
  3. StephanieL
    Why would she suggest an allergist for you? I forget, have you had the genetic testing done on you? If you don't have the genetics, then I don't think it would be necessary to continue to test the kids (unless they present with symptoms that may be).
  4. StephanieL
    Between Celiac and allergies, there are very few commercial candies my kid can have. Since day one the Switch Witch comes and takes away the candy and replaces it with a toy/book/something nonfood. This year it was several books from a series he's into.
  5. StephanieL
    Even when having the endoscopy done, the hospital could not guarantee safe food for my kid. We have a much longer list than just gluten but they still didn't have a clue. This is a "world class" top rated hospital- Take your own food. If you can't communicate that to them, you most likely aren't in any condition where you are actually eating food anyway...
  6. StephanieL
    So the only test so far that was positive was the blood work? I am not trying to be a downer but just want you to be sure you are going into this with realistic expectations. No genetics, no + biopsy and I would almost guarantee you that he's going to strongly suggest a challenge. He/his office isn't even happy when there are 4 of HIS 5 diagnostic...
  7. StephanieL
    Did you have the genetics done? Are you currently gluten-free?
  8. StephanieL
    Are you still on gluten or not? If your blood work was "on the edge" with no positive biopsy, I would suggest getting your blood work drawn again and having it sent to the May clinic as well as wherever your past blood work has been done. IME, Dr. Fassano still wants a positive biopsy if there is questionable blood work.
  9. StephanieL
    If they suspect DH and he has an active case he's getting gluten somehow so they should be able to do a skin biopsy again to check. That would mean no need for an endo (unless you want one for a baseline). A + for DH IS a Celiac dx.
  10. StephanieL
    We are 5 years gluten-free and my DS's tTG's are still not normal. After 3 years gluten-free we looked into the whole thyroid thing- He had hypo- tTG's did drop some after that but again, still not normal. Lead us all the way to seeing Dr. Fassano in Boston (which was useless but that is another story). We reevaluated and called ALL companies we use...
  11. StephanieL
    We choose to only buy pre packaged lunch meats to avoid this issue. We also deal with life threatening allergies to nuts and mortadella scares me even more than gluten. I do know people who place orders and have them sliced first thing in the morning when the machines are cleaned at night (they are "more" cleaned at night at most places).
  12. StephanieL
    So the blood test and endoscopy were both positive? He's still very newly diagnosed so it may be a while. With the sudden onset of symptoms, did they look for outer GI causes? Just wondering if there isn't some kind of strange bug. I would try and get a GOOD probiotic into him too. Even after 6 months gluten-free, my DS wasn't really well till...
  13. StephanieL
    Is this vomiting a new thing? How long ago was he diagnosed? Vomiting after every meal is NOT normal and you need to call your Dr. asap. Kids can dehydrate very quickly!
  14. StephanieL
    I thought the same thing with that TSH! Autoimmune issues like thyroid and Celiac often run together so I think this is even more evidence that you really should consider the scope.
  15. StephanieL
    I can understand having different thoughts on the procedure. Perhaps asking DH why he's so against it when it may be the ONLY way to tell if there is an issue because of the IgA issues may help you get to the heart of it and help work through it (if you are thinking you want to do it). My DH HATES hospitals. Really hates them. Not fond of Dr's either....
  16. StephanieL
    What do your religious beliefs say about keeping yourself healthy and caring for it? It's not an easy decision I am sure and I hope you can come to terms and make the best decision for you!
  17. StephanieL
    Ya know there are a lot of kids out there allergic to nuts too. A lot of these are very nut heavy. Even regular M&M's aren't safe for those kids.
  18. StephanieL
    You may get even more milage by going Top 8 free! Smarties, Skittles, Pixie Stix, Giant Pixie Stix and gummys are pretty safe bets!
  19. StephanieL
    Thanks for checking. Egg is one of ours too and that's usually the kicker for us but that is SO awesome for those who are dairy and but free!! Fantastic! Thanks again!
  20. StephanieL
    Oh my! What did you call her about, the bathroom issue or something unrelated? Are you, as a sub, represented by the teachers union? I would seriously consider looking into contacting them if you are. You weren't asking for a golden ticket you were asking for access to a bathroom for goodness sake! Unbelievable!
  21. StephanieL
    Do you have a label you can snap a picture of? Wondering if it would be safe for our allergy set.
  22. StephanieL
    THIS!!! Please keep her on gluten until you 100% figure out what you are going to do (scope or not). We are in an area now where there are questions by some Dr's (while others there is no question- go figure!) and I would not wish it on anyone! I completely understand not wanting to do the scope and if you are that much against it or prefer more information...
  23. StephanieL
    You are 8 months in with young kids- No it isn't fun and I can see why it would stop you. Even before we knew what we were dealing with with our DS my Dad would call and ask if we wanted to go out to eat...with a 16 month old. No one gets to eat a hot meal, no one gets to converse, no one has fun- nope, we'll pass! Also, it's still newer to you and managing...
  24. StephanieL
    In the absence of other testing, I don't see how it would be worth it. Is knowing you *could* have something means just that-could. It is in no way definitive. If it's - it doesn't mean you don't have an issue with gluten just that it's not Celiac.
  25. StephanieL
    I believe you are protected by the ADA (unless you are not in the US or it is a private school which I can't imagine that large a private school!). Celiac is a hidden disability. If she's hell bent on not getting you a key-I would talk to the principal and then the HR person you report to/who hired you.
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