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StephanieL

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About StephanieL

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  1. Lactose intolerance and an allergy to DAIRY are two VERY different things. The Dr. is right- you can't have an allergy to lactose which is a sugar. You can be intolerant though. A dairy allergy involves things like hive, GI issues, breathing difficulty and other issues.
  2. Chick fil a

    They will print out an exact list if you ask them.
  3. Formal dinner suggestions

    Most restaurants won't heat things up for you. How old is your kiddo? I know when we have family things, the kids are usually off playing so missing a starter wouldn't even be an issue. That said, could you do salad or some kind of "pizza" kind of roll up or mini? Something in a muffin tin?
  4. I don't think occasional "I didn't wash up" is going to keep her levels up like that. We are very cautious here (and did have a 504 plan to keep him safe at school) and it still took a long time for the levels to drop. If she's at a public school and you are concerned about her getting glutened there-you could go for a 504. Then you have the school make sure THEY are wiping down the eating space and so on. Another question, have all the labs been done at the same place? That is something to look at too.
  5. You are doing well. We didn't have a "normal" tTG for 6 years and were also very strict. Kiddo was dx with hypothyroid as well and tTG fell a lot after getting on meds for that but still didn't normalize. Finally cam down within the last 6 months (this after a trip to THE Celiac Dr. several years ago). I wish we had done a DGP much earlier and I had pushed for that sooner. I would start there and see what happens. Sounds like you're doing everything right though. Sometimes it just takes time.
  6. geneticist

    Genetic can not confirm a dx. The genes associated with Celiac disease aren't diagnostic so I'm not sure a geneticist will be able to 100% confirm. What were the signs and symptoms was he having that lead you to testing to begin with? Did they resolve when going gluten-free?
  7. We bring the snack on our assigned day and all others we bring our own. It's never been an issue and I wouldn't want other parents to get upset that they can't bring snack (which seems silly but there are those who would be upset). I never let him have the juice boxes either because he doesn't need that. He's always got water. The other parents won't care if you don't take the snack, most won't even notice.
  8. IgA labs mean nothing for food allergies either.
  9. If she's been like this for weeks, I think you should take her back to the Dr/hospital. There are IV anti-nausia drugs if it's that bad.
  10. I wound't pull gluten till you get the results from the Dr. A biopsy while consuming gluten is what is considered the "gold standard" for dx. Good luck!
  11. We are strict here. It took almost 6 YEARS to get a "normal" test. One Dr. wasn't overly concerned as he wasn't having symptoms but that didn't sit right with me. We went on a long journey (testing foods at home, retesting blood levels, flying to see a specialist who's 'Top of the List' and other things). There were some obvious things we changed early on but those didn't change things. Finally this year we had a normal tTG because no Dr would order a DGP but we finally had his allergist send for one and it was fine. I would push for the GDP first and foremost and go from there. There are other conditions that may be at play or it could be bum blood work. Just a question, were all the labs drawn and sent to the SAME facility? That can cause inconsistencies too.
  12. Just a note, milk, egg, soy and so on can all be lethal. I'm sure you know that but I just like to be sure people understand that the peanuts are not the only lethal allergy. My kid has life threatening allergies to all of the above, 1 small bite of egg even baked into something and he has an anaphylactic reaction and it's very common.
  13. I would perhaps call the OCR/DOJ and discuss the situation with them. It it wrong? Maybe. Is it legal? Perhaps. Depending on if there is government funding and many other factors will play into this stuff. In reality, most people with allergies/Celiac won't trust an institution to actually be able to manage these issues. While many *could* force the issue through the DOJ, there has to be a LOT of trust that they know what they are doing. Reading every label every time. Calling for cross contact because it doesn't have to be listed to be sure it's safe. The reality is most people just don't get it.
  14. Thank you so much for all you have contributed and all the people you have helped. Know you are in my thoughts!
  15. urthbox

    Have you called the manufacturer? Many many items are made on shared equipment (and NO ONE has to say that it is, that's 100% voluntary). They may have very good cleaning methods and testing-they may not. You would have to call them to find out.