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StephanieL

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Everything posted by StephanieL

  1. StephanieL
    Iam not a fan of lists. Manufacturers change things all the time. Providing a list can really get people to not read the labels and cause real issues.
  2. StephanieL
    Drug manufacturers use corn in a lot and I see you say that causes an issue. Also, another rock to look under is the actual handling at the pharmacy. They use the same trays to count all the pills and even if your pill is gluten-free there is no guarantee that the ones counted on the same try before yours were. If you are that sensitive it could be an...
  3. StephanieL
    Most schools don't inform parents of the existence of 504's because they do take some time/money for the schools to do in the way of meetings and they don't get any funding for them.
  4. StephanieL
    I don't think it's uncommon at all. I think when you LIVE it it's so different. You get the hand washing, prepping gluten-free before other stuff and all the in's and outs of prepping things safely. My DS was dx at 3.5, he's 7 now. My Mom has cooked for him once. My MIL never. I KNOW my MIL. She served a gluten-free pizza to her vegan son/DIL/baby and...
  5. StephanieL
    Thanks for the clarification on the TSH levels. I know when I was questioning thyroid issues with DS (after guidance from here thank goodness!) I called the two endocrinology departments and asked what the reference ranges were for TSH. One was .5-5 one was .5-2 I think which was closer to what I was looking for. Needless to say we went with the second
  6. StephanieL
    It is the most likely to kill. THAT is why schools are so aware of it. Africangueen99- DO call the school on Monday! You are SO right about "the longer she is without a plan". She's lucky to have a Mom like you for sure to be getting this all in order for her! So many things slip through the cracks with vacations and then weather related time off...
  7. StephanieL
    Can we PLEASE stop equating a peanut allergy to being glutened. They are two completely different things. Glutening is BAD. Very bad. One single glutening is highly unlikely to be fatal. I would tread very carefully. You are already meeting some resistance and I would try the "kill them with kindness" before you start any kind of discussion in a...
  8. StephanieL
    I'm looking for DOJ stuff too but there is a place in the above document stating 30 days. The one thing I would caution is that I would never include my list of accommodations BEFORE getting the eligibility squared FIRST! Sometimes schools will see what you need and decide to deny the 504. Celiac qualifies. PERIOD. After you get the eligibility THEN and...
  9. StephanieL
    I *believe* TSH's should be closer to 1 but values will vary by lab. I would ask for a FULL thyroid test including T3, T4 and free T3 and T4 as well to get a full picture.
  10. StephanieL
    That's because the likelihood of dying for peanuts is much higher than a glutening. There aren't milk or egg zones either. Each school needs to do what they need for it's students and for some peanuts/nuts will kill students. The same could be said for milk/eggs/fish and on and on. There ARE ways to portent all these kids if everyone would just work together...
  11. StephanieL
    Is this a public school in the US? If so, you need to get a 504 plan on the books!
  12. StephanieL
    I would ask for that in writing. 504 if a federal thing so I really don't think they can ask for a HIPPA release.
  13. StephanieL
    A diagnosis from the Dr. is all you need for a 504 plan. They do not need anything more than that and if they say they do you should talk to her OCR about it. Your child qualifies for a 504 and if the school is refusing, as long as it's a public school or they recieve any public funding, they can get in BIG trouble if they don't provide one! Sounds...
  14. StephanieL
    Bartfull, an allergy is a typically immediacy to 2 hour after ingestion issue mediated by IgE immunoglobulin. It DOES NOT have to be breathing that is hindered to be an allergy. There are many other signs of an IgE allergy like hives, swelling, GI issues and possibly breathing. A lot of people assume it's just breathing but it's really more than that. You...
  15. StephanieL
    Hi and welcome to you all It's a tough transition but you will get it Mama's! My DS was dx 3ish years ago. Please let me know if I can help you at all. There are so many people here with such a huge amount of knowledge it's really amazing!
  16. StephanieL
    I would NOT ever give my kids school permission to speak to any of his healthcare providers. They don't need access to them for a504 plan and it can really backfire. Many Dr's understand the disease itself but do not understand how to live with it much less the ins and outs of dealing with it at school. They ideas they have May not be what your kiddo...
  17. StephanieL
    Why do they walk around all day with food? That just sounds strange on so many levels. We have a no food in the classroom policy for my DS. He has other allergies as well. They had snacks in K but not this year. They had the kids go out into the hall at a little table 3-4 at a time to have snack and they washed hands when they came back into the class...
  18. StephanieL
    Her being gluten-free is important! What I did (since my DS was asymptomatic) was gave myself 4-6 weeks to get everything with gluten out of his diet. I started with a list of most often consumed processed foods and worked from there. Things like fruit and veggies and stuff aren't *usually* going to be an issue so those were "freebies" so to speak. So...
  19. StephanieL
    Thanks again. I'm just feeling so deflated by all this. His Celiac was dx when he was 3.5 so basically 1/2 is life ago! (In a way I think that's awesome that he was so young when we found out!) His blood work from the beginning for T3/T4 was normal. They said (again) that it was most likely because it was caught early. He's still got a goiter though...
  20. StephanieL
    I don't think they are testing T3/T4, just TSH. I just feel like we are switching Dr's every time I don't get to something and am trying to figure out if I just need to accept things as is (ya know, like I dod for too long when his ttg's weren't falling fast enough before I pressed thanks to you to test for Hashi's ) Believe me, my kiddo is 6 and I really...
  21. StephanieL
    Anything with gluten in the house is in one cabinet, prepared in one area (not even in the kitchen). Those dishes are pre washed before being put into the dishwasher as well. His desk at school is wiped down before he eats with a fresh rag with soap and water. Any x-conn I would think would be from touching things and putting his hands in his mouth which...
  22. StephanieL
    His thyroid levels are normal. Dr. was very happy with all that. They were WNL at his first visit after he started the meds (so I think it was 2-3 months after). Vit. D is good, all other blood chem is fine. He is completely symptomatic of gluten though he always was.
  23. StephanieL
    He's almost 7. Doesn't go out without us. Doesn't eat anything not from home. Isn't sneaking anything (we don't have a lot of gluten in the house and what is is behind a locked cabinet because of his little meddling brother He eats pretty much the same things daily: Pancakes and sausage for breakfast Sunbutter and jelly sandwich for lunch with...
  24. StephanieL
    So my kiddo's tTG's took forever to drop (his biopsy was negative). Started in the 130's 6 months:70 12 months:same 18 months: 36 24 months: 31 DX with hashi's and put on thyroid meds. Within 3 months of going on the synthroid his tTG's were FINALLY normal...for a year. Now they are *slightly* (23 (normal being 19) and 25 (normal of 20) elevated...
  25. StephanieL
    It depends on why you are avoiding dairy. I would never let my dairy allergic child have it.
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