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StephanieL

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Everything posted by StephanieL

  1. StephanieL
    Without knowing what kind of Dr. and what kind of testing, I think that blanket statement is not exactly accurate. Ennis, if it was a holistic/chiropractor who did this testing, they the results are of little use. If it was a Dr. it *may* be accurate.
  2. StephanieL
    We've been on the diet for 5 years. We still have positive tTG's and were dx with thyroid issues too. No one has any answers as to why or any recommendations. It just may take more time for your kids. Hope they do come down to normal for you!
  3. StephanieL
    I'm sorry. I am trying really hard to understand the situation and honestly, it's just all over the place. I have never heard of a "slow acting" allergy. If it's an allergy, it needs epi pens. It's not a gray area in allergy land so trying to understand that is really hard. I know/ have known hundreds of people who had kids with allergies that need accommodation...
  4. StephanieL
    You either need to be proactive or you need to deal with it. You've gotten a lot of information here to help you but unless you do the work, there isn't anything else anyone here can really do. I will say I was speaking with a group of allergists today and they were all really surprised about how your Dr's are dealing with what you are saying are IgE...
  5. StephanieL
    You may want to send the CDC's recommendations to the principal and the district as well. Open Original Shared Link
  6. StephanieL
    I understand the frustration. It's hard and schools are very reluctant to change. There are federal guidelines and some states are better than others at protecting kids with issues like this. Depending on where in the states you are, you may have more resources. Have you seen a new allergist here in the states yet? As I said, submitting a letter from...
  7. StephanieL
    In general- An allergy isn't slow acting. An IgE mediated allergy happens within 2 hours (usually much sooner) of ingesting and includes things like swelling of lips/face/eyes, GI issues, breathing difficulty, hives and a lot of other things. If these happen, then your kids should be under the care of an allergist and really should have epi pens. The thing...
  8. StephanieL
    No, but I also don't (and haven't) ever touched pills while working in a pharmacy. You pour them out, count on the tray with the spatula, dump those not being used back and the ones to be dispensed into it's bottle. There shouldn't be any contact between you and the pills anyway.
  9. StephanieL
    So first off I would really consider a 504 plan. It is a LEGALLY BINDING document and they MUST follow. It's part of the ADA act and your kids are protected by it. As for what accommodations they will agree to, I would try and get documentation from your Dr. that repeated exposure to gluten does/has caused significant issues for your children. I...
  10. StephanieL
    Is this a public school? How old is the child? If it's a public school you can ask for a 504 plan that may limit that. Also, depending on the kids age, teaching over and over the importance of washing up before eating/toughing ones face and so on.
  11. StephanieL
    Have you considered removing dairy from his diet? Many people with Celiac disease have issues with dairy too. As for weight- I can understand that everything thinks he should be gaining more BUT what were your hand his Dad's build at that age? Were you small kids? Is there the genetics to back up him being small? It really could be that he's just a...
  12. StephanieL
    Synthroid isn't not gluten free- it's just "not guaranteed" to be gluten-free any more. I don't think there was gluten in it from my memory and checking the list but I think they have just gone CYA and are now saying they won't guarantee it. FWIW- We use Mylan brand here. There are also many adults on here who really prefer the more natural (Thyroid...
  13. StephanieL
    Just to mention that Dr's often have a different set of criteria for little people. I am not saying I agree with this or that it's right/smart (needing hard core damage before calling it what it is) I am just saying it is not surprising that they are kind of "eh, well, perhaps with those tests and that biopsy maybe, maybe not." There seems to be a real...
  14. StephanieL
    Yes, I don't think they are routinely given for drug allergies for exactly the reason you stated but now it really sounds like you should have one. And IMO you need one ASAP, not in a year when you get into the allergist.
  15. StephanieL
    Do you have epi's for your drug allergies? With the reaction you are describing, you really should have 2 epi pens with you at all times.
  16. StephanieL
    This may help with those other food allergy tests you mention Christina. They are NOT scientifically proven which is why people jump all over them (because they are expensive and not useful and VERY OFTEN lead to people having highly restricted diets for no reason!) The only way to "test" for an intolerance is to go off the food then reintroduce it. (Technically...
  17. StephanieL
    That is a very bad idea and not one that is supported by the AAAI and other medical societies. They recommend ONLY testing for foods to which one has seen a reaction. The high rate of false positives on these tests make them only a guideline AFTER there's been a reaction.
  18. StephanieL
    I don't know if there is a specific site to tell you the difference but here is what I know (we have both Celiac disease as well as other food allergies). Celiac is an autoimmune disease. Gluten causes the body to attack itself causing intentional damage which means problems with nutrition and all the other 300 symptoms of Celiac Disease. There is a Celiac...
  19. StephanieL
    Celiac Disease and an wheat allergy are NOT the same and the testing is not the same. Have you visited an allergist? How soon after gluten consumption do these things happen? If they are within 2 hours of ingestion then it is more likely it's an allergy and they you should get epi pens and be sure everyone who takes care of her knows how to use them...
  20. StephanieL
    Eat before you go. Buy water.
  21. StephanieL
    You are 100% correct. USDA is NOT covered by labeling laws. We've eaten it with no issues. GE is going through a HUGE thing with posting signs around the stores about allergies and stuff too. I believe there was an issue with some recalls recently (not gluten related) so they are in a CYA mode.
  22. StephanieL
    I have never heard of a connection between Celiac or allergies and nose bleeds.There can sometimes be a vein near the surface in the nose that is annoyed by being dry for one reason or another that makes it easy to break the skin and expose it.
  23. StephanieL
    It's hasn't been determined if/how much gluten protein would get through into the breastmilk. It's hard to say what and when it could have an effect on a kiddo. FWIW, I nursed my kid with Celiac Disease till he was a few years old and I was NOT gluten free. He didn't show any outward signs of it harming him.
  24. StephanieL
    We can't use BRM because of anaphylactic allergies.
  25. StephanieL
    I haven't found safe options for those flours/grains.
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