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StephanieL

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Everything posted by StephanieL

  1. StephanieL
    Is it a public school? If so I would request a 504. This is a LEGAL document outlining what they need to do to keep her safe. You must write to the school to request a 504 meeting and I always include a document form our GI (and allergist in our case) stating the diagnosis and what ingestion does to him and why he needs to be on a strict gluten-free diet...
  2. StephanieL
    Let us know how it goes!
  3. StephanieL
    We use them all the time with no issue.
  4. StephanieL
    I think it depends on the Dr. you see or the research you read. Just because you have the markers does not mean you will ever have an activation of the disease. Just as many people have cancer genes but it doesn't mean they WILL get it.
  5. StephanieL
    How about you send her food?
  6. StephanieL
    My DS had no gut issues when on gluten. It was a zero Vit. D level that put us on the path to Celiac. Be grateful that you aren't in the ER and that you'll have a scope with (hopefully) answers. Was there positive bloodwork?
  7. StephanieL
    Breast milk is considered a clear liquid and you should be able to nurse her a bit closer to the time of the procedure. You need to check with the Dr's. Open Original Shared Link
  8. StephanieL
    We got a second opinion and still waited to do the biopsy when we were going through it. I was so scared and uneasy about it. Looking back, it was WAY harder on me and Dad than it was on kiddo It is hard and scary and that won't change if she's 1 or 21 I don't think.
  9. StephanieL
    If gluten is the "only" thing you are avoiding, you can find subs for pizza and mac n cheese pretty easy! You can do it Mama!!
  10. StephanieL
    In our family it is my oldest who was dx at the age of 3.5 (he's now 6.5). I have 2 younger kids who are 4 and 18 months. Our 4 year old was tested after being exposed to gluten over months at preschool and was negative. They are all gluten free at home for safety and my sanity. The 18 month old is gluten free except for what may be passed through my...
  11. StephanieL
    DO NOT go gluten-free until you see the GI. It is so hard to go back on when you need to for testing.
  12. StephanieL
    They aren't saying you can't come to the game because you have Celiac. The food may be part of the "experience" but the experience isn't what your ticket price covers. Just like at the movies. You can't bring stuff in. Period. The price of the ticket is for the movie. We have a list much longer than just gluten. We eat before or after or call well...
  13. StephanieL
    Accommodations aren't just about eating. They can include things like art supplies, bathroom trips, absences, lunchroom cleaning policy and on and on. For a 504 plan with accommodations, a formal diagnosis is needed in the US.
  14. StephanieL
    If she had DH, why not biopsy that right now and then you won't have to worry?
  15. StephanieL
    Is it bilateral? If so, are you sure it isn't eczema?
  16. StephanieL
    The genetic test isn't diagnostic which is why it most likely wasn't offered. It's used to show a genetic predisposition to converting to having Celiac disease. DH means they have Celiac so yeah, gluten free for life. Again, I would find a GI Dr. who is knowledgeable with Celiac. Make calls. Ask what the diagnostic criteria they want is based on...
  17. StephanieL
    With that reaction and the strong family history (Mom and sis) I would think that doing the genetic test would be the next step. If the genetic test is positive, I think that would be enough for a diagnosis. Good luck!
  18. StephanieL
    Ahhhh, yes That I totally get now! An allergy to wheat (possibly outgrown) vs. Celiac (life long issue). Like I said, I know you just want answers! It's so hard when we want to fix things for our kiddos and we can't figure it all out. I don't think any parent wants any kid to have any medical condition! Again, I do hope the GI Dr. has some...
  19. StephanieL
    This statement is really really ignorant. Neither one is fun. While things may be outgrown, many allergies are not (specifically peanut which has a very high likelihood of cause anaphylaxis which can lead to death). I know you are searching for answers but to downplay one disease process over another when they aren't even in the same ballpark is really...
  20. StephanieL
    I wouldn't put someone on the spot to begin with. I call ahead. I check out menus online if available. If I were in this situation, I would have walked out. Things trickle down. If the manager was a jerk, I would kind of expect that attitude to be common. Sounds like her daughter was lucky that the others were good about it. Also, I have found that...
  21. StephanieL
    ZB, The genetic test isn't going to confirm a diagnosis. As with all things genetic, it only tells you if you have the predisposition to developing it. If you do want an official diagnosis, I am sorry to say but your kids need to be consuming a regular amount of gluten for any of the diagnostic tests to be accurate. So parents want this and some...
  22. StephanieL
    It is so frustrating. The AVERAGE time it take to be diagnosed 6 years. It sucks. I would get everyone tested at the same time. If you have to switch over for one or more than one then knowing would be great. Hope things get figured out ASAP. Also, you are keeping the child on gluten, right? That is the most important thing till everyone gets tested...
  23. StephanieL
    This is not true at all. The size of the hive nor the "class" of blood work have any indication on how minor or server an allergy will be. It only shows that your body has been sensitized to that thing and even that is a false positive 50% of the time.
  24. StephanieL
    SPT (skin prick test) and blood tests for IgE allergies have about the same degree of accuracy. Some people have "truer" results with skin over blood or vice versa.
  25. StephanieL
    If you want an all in one, I swear by King Arthur's AP gluten-free flour! We have other allergies in our house (nuts and peanuts) so we can't use Bob's.
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