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StephanieL

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Everything posted by StephanieL

  1. StephanieL
    Happy Place- Have you ever heard of FPIES? I Am wondering if that is the issue at cause here. It is basically what you are says, a non-IgE mediated condition. Not having the genes for Celiac is pretty much a no, it isn't Celiac. There are *some* cases without the gene but they are kind of like unicorns As for the facility warning stuff- This is a BS...
  2. StephanieL
    I really have tried to refrain but this is beyond frustrating. 1) Are you in the US? That could change things vastly. 2) It sounds like there is a PACKAGED facility warning the school is talking about. I haven't heard of ANY school ever saying anything about home made stuff. This policy is not helping anyone really as when they are that ridiculous...
  3. StephanieL
    I will not leave the boards over this but I will not comment further on it was all I was meaning. Can't chase me away that easily! lol Thanks for the support those of you who know me and my "credentials" as they may be I do appreciate the support! <3
  4. StephanieL
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  5. StephanieL
    Are you serious? I am stating there are people who are sensitive enough that they need certain accommodations to be safe in a school environment. I have stated SEVERAL times that they are few and far between. I have stated that there are ways to make accommodations so that every student is kept safe. I am sorry that my years here on this site and my...
  6. StephanieL
    There are people who are that highly sensitive. I don't exactly understand what evidence of that I can provide you with aside from people I personally know/
  7. StephanieL
    (I messed up the quoting, sorry) "The potential of a kid dying due to allergies extends far beyond nut allergies. One of my children has anaphylactic wheat allergy and had to be hospitalised twice with emergency surgery before we could get the school to consider her needs seriously. I don't think most here generally oppose accommodating nut free school...
  8. StephanieL
    The potential of a kid dying kind of does supersede another kids dietary needs. There ARE kids who need that wide of an accommodation. I am not a proponent of schools banning nuts for exactly as you stated, it gives people a false sense of security and TYPICALLY is overdoing it. There are many different ways people choose to deal with it and it sounds...
  9. StephanieL
    If you need accommodations for school you will need a dx (and think LONG term not just elementary school think college and so on). If you need special meals in the hospital, she will need a dx. If you expect her to (for the most part-all kids deviate at some time when they test limits) maintain a gluten-free LIFE, long term, many people need that...
  10. StephanieL
    If you are dx, many Dr's will accept a kid with symptoms and positive blood work and maybe genetics for a dx. You won't get one with NO testing most likely. You may be able to get away with no biopsy depending on how your testing works out. I would suggest if you are near a large Childrens Hospital, calling the Child Life people to manage the blood work...
  11. StephanieL
    There are people who are allergic enough that they need that strict a rule. They are few and far between. That said, facility warnings are 100% optional. The school doesn't know that something is from a nut free facility because they manufacturers don't have to say that and I HIGHLY doubt that every single snack coming in is from a PN free facility...
  12. StephanieL
    I did read your entire post. I understand that you were supported in your decision by your Dr. That is NOT the process that 99% of the Dr's follow and doing so could lead to a misdiagnosis. Your experience is 100% valid but it really needs to be stressed that going on a gluten-free diet before the biopsy in 99.999% of cases is a very bad idea. We...
  13. StephanieL
    I really think your post could stop there. There is a reason Dr's do things the way they do and suggesting people go against that often times leads to issues. While I understand wanting to ease your childs issues I would definitely try to hold off till cleared by your Dr. to begin the gluten-free diet.
  14. StephanieL
    Yes. Blanket testing is not recommended by the major allergy associations. The only 100% is a known reaction.
  15. StephanieL
    Your cookware may not need to be replaced but it depends on what kind (nonstick tends to scratch and hold onto icky gluten) but the list Africanqueen made is a good one. We have red/orange cooking utensils for gluten free cooking (though that's pretty much all we do now. It's more for when we have doings that I have other serving wear.) We did some...
  16. StephanieL
    IgG testing isn't for allergies. IgE is for allergies and has the 50% false positive rate.
  17. StephanieL
    Yes it is more an ingredient list. We've had to do it and I would write things like pancakes and list the ingredients the first time or if I changed anything I would not the change. If it was something prepared I would add the brand and save the packaging. This was the only way we figured out DS's coconut/palm oil allergy and it took a while!
  18. StephanieL
    The thing with allergy testing is it is notoriously inaccurate. So even saying they have a + allergy result there is a 50% chance it's a false positive. If there hasn't be a recognizable reaction (breathing, hives, throwing up and that kind of thing) general stomach ache isn't going to be an allergy. Allergies present in 20 minutes to 2 hours and aren...
  19. StephanieL
    Hugs. When was the last time she had blood work? Have they looked at the labs for compliance lately? I would start there and get things like nutritional panels, thyroid and general blood work while you're there. I hear you about all the things going through your mind. We are 4+ years gluten-free with a still as of yet not normal tTG on a strict...
  20. StephanieL
    How old is she? Is she at the "trying to sneak it to be normal" age? Have you added any new products that may be an issue? Any new pets or anything?
  21. StephanieL
    Take a breath. Know this: It sucks. As a parent it really sucks. It stinks then we know the things they won't have. It sucks when they are upset about being different. It sucks when you see people treating them different and they don't even realize it and you want to punch people! ALL of it sucks! It is a huge change. It will take time but you...
  22. StephanieL
    We haven't ever had issues with any of the above. Go. Enjoy! Wash hands and strip them down when you get home and have a good bath!!!
  23. StephanieL
    We're 4+ years and still looking for normal. This includes calling all food companies, testing with test strips, reevaluating everything, looking into thyroid issues, getting on thyroid meds and a trip out of state to a Dr that is very highly regarded by many. I am not saying this will be your road but it will take time with numbers that high. My...
  24. StephanieL
    The thing with theses kinds of list is that so often it starts this "there's gluten in WHAT?" when they are very often isolated instances. I just caution people that just because it is in ONE kind of thing may have gluten doesn't mean there needs to be a mass worry about it! I think that's how the whole envelope thing started.
  25. StephanieL
    Just so you are aware the both skin and blood testing by an allergist have a 50% false positive rate.
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