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StephanieL

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Everything posted by StephanieL

  1. StephanieL
    Udi's has egg which I believe she is avoiding too. There are any real good breads that are free of gluten and egg esp. with no nut cross contamination. It's been the hardest thing for us to find. We go for pancake sandwiches and rice cakes for bread.
  2. StephanieL
    Pardon my questions but I am trying to piece things together. Who did this sensitivity testing on your son? IgG testing isn't very scientific. I would not pull any foods from an already restricted childs diet based on IgG numbers. If it's an IgE allergy, yes but you are limiting a lot with not a strong amount of science as to why. I know gluten...
  3. StephanieL
    There is no reason to pump and dump. Well, a very few reasons (think surgery with heavy meds or chemo). Even an occasional drink of alcohol isn't a reason to pump and dump. On the off chance you do ingest gluten, it isn't a 100% thing that it will get into your breastmilk. It may, it may not and no one knows how long it does stay in the milk. Also...
  4. StephanieL
    We do only food from home. The first year DS was only there 2 days a week so they just didn't do play doh when he was there. With DD last year we made it and sent it in BUT you would also need to supply the tools or they will just contaminate the play doh. Also yes, stay away from pasta art or send in safe pasta. Good communication with the teachers...
  5. StephanieL
    If you are trying it at home, maybe try the coconut (I would cut back a little on it and remember it will impart a bit of coconut flavor which people may or may not like). For the party, I would stick with the recipe on the box unless you try it with coconut first. Nothing like a flip of a recipe when you expect guests any minute!
  6. StephanieL
    *MOST* people don't think anything of feeding a child. Unfortunately a bracelet is unlikely to help stop that. Teaching the child rules about taking food from people is the most important thing. The purpose of the medic alert bracelets is more for emergency personal. My child does wear one for life threatening food allergies. Celiac isn't even listed...
  7. StephanieL
    I think so much is the "diversification" of the food industry. If XYZ ONLY made Food A, there wouldn't be all the x-con issues. You would buy X from one place, Y from another and Z from the other. It is one of the reasons I like companies who "specialize" in one or two things, less risk. We deal with far more than just gluten though.
  8. StephanieL
    I looked and I think that pretty much covers it for the gluten-free stuff. We also have food allergies to deal with and some things are more specific to that. If you would like, I can message it to you.
  9. StephanieL
    There actually is a formal process. First is the meeting to determin eligibility and if it is eligible they move onto the accommodations. It is different from an IEP, very true but there is still a process which usually includes the school psychologist along with a team of others. I will look for our plan tonight at some point. One thing you may want...
  10. StephanieL
    I just wanted to add that if x-con is your major complaint, it isn't any better for people with allergies. The "May contains" and the "processed in a facility" label is voluntary. 100% voluntary. People with allergies have to call all the tie so this isn't just a Celiac issue.
  11. StephanieL
    I have hear the "2 and younger" thing too and I am not sure how accurate that is. My DS was tested/dx at 3. We did test DD who was a tiny baby at the time (I think around 7-8 months if I remember correctly) and as guessed she was neg. but I wanted to be sure since I knew we would be going gluten-free for all the kids in the house and figure it was better...
  12. StephanieL
    That's awesome! To get the numbers dow so fast is great! WTK to both of you!!!
  13. StephanieL
  14. StephanieL
    Being on gluten won't cause the testing to be off. The testing just isn't really that reliable to begin with. If the Dr is suspecting a hystamine issue that could explain the strangeness of the tests.
  15. StephanieL
    Good! I hear a lot of people tossing around allergy stuff but not seeing an allergist. I think looking into histamine response issues is a fair place to start. Maybe if they are still at a loss have them call up Dr. Woods in Texas (I think???) I hear he's tops in the field!
  16. StephanieL
    Is this a board certified allergist? I will say that blood OR skin testing is only 50% accurate for a positive and 90+% accurate for a negative. So not knowing your story, if he was eating those things with no issue, I wouldn't take them away but I am also not a Dr. Immunology sucks!!!
  17. StephanieL
    And yes, you need the dx for each person. You can't claim it on "they should be on a gluten-free diet becaus eof genetics.".
  18. StephanieL
    Open Original Shared Link
  19. StephanieL
    I'll start with this: My DS was dx 2 years ago. Been gluten-free since. I am a perpetual researcher and have figured out things that the Dr's didn't. I think I know my way around Celiac. So my DH's Aunt was over yesterday. She was recently dx...via saliva...with a long list of issues. So she is now off soy, gluten and a host of other things including...
  20. StephanieL
    My son did have the genetic testing. I have not. I also suspect its on my husbands side because of issues on his side. I am all for blaming it on his side, ey deserve it! Lol (the blame, not the disease!) They did pay for my sons genetic testing after the biopsy (it was inconclusive and sent to Dr. Fassano who read it as negative). I have one Dr saying...
  21. StephanieL
    My son was only 3 when we did the biopsy. I think there just wasn't enough damage for the positive on biopsy. As for terminology, I think a lot depends on the Dr. Dr. Fassano now has a 5 point criteria he is willing to dx on without a biopsy. I think that if there are issues and + genetics and resolution of symptoms, it's Celiac. If the genetics...
  22. StephanieL
    We were given the option of A) Staying on gluten and scoping every 6 months till we saw damage go gluten free and see what his tTG numbers did. My son was asymptomatic so we were really unsure what to do. After a few months (literally) we decided to go gluten-free and see what his blood levels did. They went from over 120 to 48 in...
  23. StephanieL
    I have been tested (celiac panel but not genetics) and I was negative. DH refuses to get tested Like I said I just wish there were an easier way.
  24. StephanieL
    Many schools are moving to a "no food treat" for birthdays so maybe check on that policy first
  25. StephanieL
    I guess I am wondering too if I should get he baby tested as he may be getting some gluten via breastmilk. I am thinking maybe before kindergarten for DD as I am not going to be able to get a 504 for her unless we have a dx. I wish ere were an accurate way to test without having to be on gluten
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