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StephanieL

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Celiac.com - Breaking Celiac Disease News & Info:

Everything posted by StephanieL

  1. StephanieL
    For the dairy then? Getting back to it, the Hellmann's response about soy is basically you've been eating it all along and not they have changed labeling practices. You've never had an issue so I would guess your soy issue is a) a true IgE allergy and it's highly enough processed or b ) you are more intolerant than allergic. Did they test...
  2. StephanieL
    Did you see a board certified allergist or a chiropractor or some other kind of practitioner? I am NOT a Dr. obviously so if that is what she told you I will not argue that. I will say that allergy testing is 50/50 for a positive. Meaning 1/2 the time it's not a correct diagnosis. If your issues were only mild nausea, most would call it an intolerance...
  3. StephanieL
    Then you are intolerant and not allergic if you were not prescribed epi pens. That said, I would assume you are okay with the highly refined oils which is why you haven't had issues in the past which is a good thing!
  4. StephanieL
    I would start with your GI Dr. who diagnosed your kiddo or your local children's hospital. They usually know what support groups there are around. You can also try checking out Facebook for local groups. We're in Ohio and there is one called ROCKS here (Raising Our Celiac Kids) but I don't know if they are just local or part of a national group...
  5. StephanieL
    Highly refined soy hasn't ever had to be declared in foods. I don't know why they are saying it needs to be now because I was not aware of anything like that coming into law recently. Are you actually allergic, as in epi pen? If so and you haven't reacted it's one of those soy oil vs. soy lecithin type things where you don't have an issue with the...
  6. StephanieL
    I don't see anything listed that would indicate gluten in this medication. You should call the manufacturer yourself to check that. FWIW- depending on how long she's been gluten-free- she really shouldn't be needing something daily for this. I would look at other sources of hidden gluten or a different dx.
  7. StephanieL
    Did they run ay Celiac disease serology on you? That would have been the typical first place to start. As for the biopsy- Celiac isn't something that attacks the entire lining of the intestines, it's patchy at best so it is possible to miss it esp. if the Dr. didn't take enough biopsies to begin with. I would start with asking for a copy of the patho...
  8. StephanieL
    Where are you finding this information? I know corn is sometimes used in plastics but haven't heard of gluten.
  9. StephanieL
    I believe most levos are gluten free. I know Mylan is but you would need to call on the strength you use. You can also check out Open Original Shared Link
  10. StephanieL
    It's repackaged Sunbutter and is gluten free. We use it all the time. The brand name does label it as gluten-free I believe (I can double check if you want as I have both in my basement). They only thing that there is a CC warning for is soy. Jessica77- that isn't true about the labeling. They can indeed put gluten-free on the label as long...
  11. StephanieL
    Nope. Not at 5. Would it be expected that a diabetic kid at 5 would be able to monitor their condition with no adult guidance? A 5 year old to inject themselves with epinephrin? Celiac is a legally qualifying disability in the eyes of the ADA so the school DOES 100% have the responsibility to do just that. Now not having a 504 means in this specific...
  12. StephanieL
    Yes, at 5 they need to be supervised at all times. Kiddo did do a great job but that is a lot to put on a kid that age. The repercussions of a slip up could be really bad. If the school knew and didn't even try to double check that it was okay, Mom has every reason to be upset.
  13. StephanieL
    They did a wrist bone x-ray on my 4 yo when he was first dx. Because he was still growing they believe he'll be fine and haven't done any follow up bone testing.
  14. StephanieL
    THIS is such a sad attitude from an educator. This is a 5 year old CHILD that is being expected to make the right choice. This is a kid who may want to "fit in" and just try it with bad results. These kids KNOW they are different and this kind of thing just reinforces that to them when all they want is to be like everyone else. Yes, they have to learn...
  15. StephanieL
    Yes Mylan is what we use and have for a while now. Be SURE to have you pharmacy note on your account you only want Mylan brand. Don't use the automated systems to call in refills, talk to the tech and tell them ONLY MYLAN. FWIW with the price of levo, I have DS's Dr. write the script for 100 pills with 3 refills and just take a whole unopened...
  16. StephanieL
    I believe they are required to put the brand on the label. It may be in smaller print thought. FWIW, I have personally called companies and waited WEEKS to get the information I needed. And I only got it when I called them out publicly (which I didn't want to do but after 4 weeks of phone calls, I was at my limit and had to get answers for...
  17. StephanieL
    Were the tests run at the same laboratory? I would start there. Were you having obvious S&S before dx? Have those gone away? Do you eat out a lot? Did you change out things like your toaster and strainers?
  18. StephanieL
    What brand levo? I call the manufacturers myself. Most will say "no added gluten but we don't test". We use Mylan brand here. You can also check out this site: Open Original Shared Link
  19. StephanieL
    Were all the labs done at the same place? I have found HUGE differences if they are run at different facilities.
  20. StephanieL
    This is actually not likely the case. The school can not disclose this information to you without specific say so from parents. There may be kids with 504 plans in the class and there may be many other requirements than you are aware of. One more reason there just should be food in the classrooms overall. Spangler candy canes wold be...
  21. StephanieL
    Being young, it would be best to get a baseline and 100% confirmations on the Celiac diagnosis for many reasons. I would do the endoscope/colonoscopy. The prep will be difficult and not fun but the procedure itself will be harder for you than her! I promise you that. It sucks for parents. My kid was 3.5 for his and he remembers none of it. I remember every...
  22. StephanieL
    Is it assumed there are no other allergies or food related health issues in said class?
  23. StephanieL
    What is your concern in having the child help? As long as they are washed up and not spitting in the food (if you really at that worried have them wear an apron) there isn't any reason they shouldn't be able to help out!
  24. StephanieL
    I would start with your colleges Disability Department. They may be able to guide you. Is there a reason you are having such bad symptoms? Are you on gluten while awaiting tests? If you are so bad that you can't leave the home there must be more your Dr. could be doing.
  25. StephanieL
    It would be unlikely that you would have developed a wheat allergy after just a month off of wheat. It is not impossible but not likely especially if you haven't had those symptoms prior. You could get the allergy test but know it is HIGHLY inaccurate (50/50 on a positive test). Is your Dr. dx you based on the return of symptoms and your genetic...
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