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StephanieL

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Celiac.com - Breaking Celiac Disease News & Info:

Everything posted by StephanieL

  1. StephanieL
    My DS doesn't have immediate issues when he ingests gluten and can be 6-8 ish hours after he eats it (happened 2x in the first year post diagnosis.)
  2. StephanieL
    No judgement here on your situation. Unfortunately it's not uncommon (sadly). A full blood panel isn't the only step for diagnosis in kids. For a variety of reasons there really should be a biopsy should the blood work warrant it. While NO procedure on your kiddo is "minor", an upper GI is relatively easy for the kiddo (I think all the waiting for...
  3. StephanieL
    You are doing the best you can Mama! Please don't think I was trying to judge- I was just relaying our experience was all. Sounds like you've been through the steps. The gluten thing may be. I was just trying to clarify when you said he had a gluten allergy that you mentioned in the first post then said it wasn't a wheat allergy. You can't be allergic...
  4. StephanieL
    You mention gluten in your first post-I'm a little confused. A really good food log can often help pinpoint the offending foods when nursing (we did every ingredient, time, reaction time, BM info) to figure it out. I nursed 3 kids with a variety of intolerance/allgery issues over 7 years. This is what helped find the problems for us. I was very committed...
  5. StephanieL
    I am in NE Ohio. I'm going to guess you see Dr. Melton. Also, was it wheat that he was dx with? Because there isn't a real gluten allergy though you can be allergic to wheat.
  6. StephanieL
    Scratch testing on an infant that age is unusual. What reactions were you seeing that lead to testing? Also know that allergy testing is only accurate about 50% of the time when there is a positive result. As for probiotics- you can check out Custom Probiotics. They were a miracle for our kiddo. I know they are free of D,E, PN, TN and gluten...
  7. StephanieL
    There is no reason to isolate you kiddo in school with a 504. The idea of a 504 is actually to NOT exclude kiddos with non-learning issue issues. I would really look at what you need to keep her safe and included and work on those things for the 504 plan.
  8. StephanieL
    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.
  9. StephanieL
    They will print out an exact list if you ask them.
  10. StephanieL
    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?
  11. StephanieL
    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...
  12. StephanieL
    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...
  13. StephanieL
    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?
  14. StephanieL
    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...
  15. StephanieL
    IgA labs mean nothing for food allergies either.
  16. StephanieL
    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.
  17. StephanieL
    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!
  18. StephanieL
    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...
  19. StephanieL
    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.
  20. StephanieL
    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...
  21. StephanieL
    Thank you so much for all you have contributed and all the people you have helped. Know you are in my thoughts!
  22. StephanieL
    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.
  23. StephanieL
    Did you introduce gluten at 6 months? I would not immediately think Celiac disease with what you are talking about. There are a TON of things that could be going on OR nothing at all. Are you and the babies father small people? If so, that there could be the reason for the "low growth". Those charts are a) VERY old and b ) not supper accurate. I...
  24. StephanieL
    Naturopaths do not do any allergy testing that is documented as being useful in any way. If it was an allergy, a board certified allergist would be the person to see who would do IgE testing for an allergy.
  25. StephanieL
    This is one of those times you have to look at the odds- 1) MOST meds are not filled with gluten 2) IF a company makes something with gluten, there may be different lines. 3) If not, they typically are going to have to scrub lines BETWEEN batches of drugs. You can not run the risk of giving someone a medication they may be allergic to or that...
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