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StephanieL

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Everything posted by StephanieL

  1. StephanieL
    You do know that many many in the community don't ascribe to that though. Especially in kids. The genetics aren't dx but give more credibility to a dx in the absence of a + biopsy. Again, doesn't matter if the biopsy is +. Any word on when they'll have that ready? The waiting really stinks
  2. StephanieL
    The genetics isn't diagnostic at all. It shows the predisposition to developing Celiac. If the blood is + but the biopsy is - then the genetics would give an indication of "Well you don't have active Celiac but you have the antibodies, S&S AND the genetics so yeah, it's more likely than not Celiac." but still not 100% for sure. It is another piece...
  3. StephanieL
    Alton Brown's recipe- I alter it for D, E, PN, TN and Gluten-Free! Open Original Shared Link
  4. StephanieL
    Things can look very normal but be positive. It isn't uncommon to have high numbers and an inconclusive biopsy. There are several thoughts on where to go from there. We were told to either keep him on gluten till the biopsy came back positive or take him off. Looking back at everything we have been through, I would not have taken him off till there...
  5. StephanieL
    Have you had your blood tested at different labs? There is a possibility that your test results aren't accurate using one of the tests. I would try that before any other diet modifications.
  6. StephanieL
    I don't think so. They are actual onion rings. I too just make my own. It is't hard at all.
  7. StephanieL
    I haven't made this but I haven't had a bad recipe from them yet. Open Original Shared Link I pretty much only use KA flour! We have a longer list of foods we can't have and the flour is produced in a safe facility for all our allergens. Love it!
  8. StephanieL
    John I get it. It's in EVERYTHING. We had to avoid soy on top of our long list for a long time and it is hard. My point was only that if the are catering to the allergy set, they may not know that some people have issues with ALL the parts of soy. There are people like you who can not deal with any of it but there is a majority that even if they have IGE...
  9. StephanieL
    It was probably a surprise to them because most (no not all) people with soy allergies don't have an issue with lecithin as the proteins have been removed.
  10. StephanieL
    If it was posted about the bills passed for foods in school, I would say 100% yes! Why is this "Obama's" lunch plan? Why not the congresses lunch plan? You know it has to pass over several peoples desk right? So the opinion that the bill sucks would have been one thing but to put the blame on Obama is really just silly.
  11. StephanieL
    Can we PLEASE leave Obama out of this? Really? For MOST kids, they are really trying to improve things by adding whole grains and more fruits and veggies. That is a good thing. For most kids. To the OP- While in theory yes they do have to, how well they do it may lead you to want to keep packing lunches. I have seen some gluten-free menu's and they...
  12. StephanieL
    When sending food back for any reason I cut it apart so they can no "reserve" it to me. I have found cheese scraped off of burgers for my child with life threatening allergies. Doesn't happen now that I do this. Sorry you got sick
  13. StephanieL
    Part of it is that your daughter IS young. The average it takes for adults to be diagnosed is 7 YEARS! That's getting better but still. There may not be enough damage that there are other kids with it OR they may just not have figured it out yet. My DS in in 2nd grade. He has multiple life threatening allergies and Celiac. He's the ONLY ONE in his...
  14. StephanieL
    Do you do a lot of dairy? Many times that can be an issue. I am sorry you are dealign with this. Not fun at all
  15. StephanieL
    Hi and welcome! 2 is a REALLY hard age for anything social with food issues. All the kids eat all the time all over the place! It's a fact of the 2 year old crowd unfortunately. We've had to go through this will 3 kids for various foods (some being life threatening allergies) and 2 is just hard. I agree with the feeling of social isolation you are going...
  16. StephanieL
    Great news!!!
  17. StephanieL
    You need to see an pediatrician and perhaps a GI Dr. for this stuff. Not a chiro. I love my chiro for many many things but Celiac testing and anything immune related needs to be dealt with by the appropriate Dr. And NO, you can not do an endoscopy if the child is not on gluten. Do not remove gluten from the child's diet till you see a GI Dr. You are...
  18. StephanieL
    I think everyone is telling her exactly this, that she needs to see the Dr. She was looking for experiences on biopsy vs. not doing them and I believe there are pros and cons to each. Did your kids have the genetic testing Angela? I do think that esp. in kids, waiting for damage is silly if they do fit the other criteria for a celiac disease dx put...
  19. StephanieL
    I wasn't questioning it really. We went to try and figure out why his levels are still elevated after 4+ years on the diet And for that we still have no answers which makes me crazy!!!
  20. StephanieL
    We went to Boston in the early summer. We had "stuff" we had to do when we got back including getting them slides of the original biopsy, blood work sent to Mayo as well as here at home and then dealing with the possibility that DS" brain was falling out of his spinal column (which it is thankfully not! lol). THEN we had school starting when all that was...
  21. StephanieL
    When asked exactly this about his criteria (which my DS fit 4 of the 5 being only biopsy negative) his office said that isn't the criteria for children and would not elaborate on why that is. He is not easier on kids and expect us to do a gluten challenge and biopsy for my kid who has been gluten-free 4+ years to confirm celiac disease. This was with initial...
  22. StephanieL
    Honestly, I don't like it. It makes it look like these are choices for some kids which it isn't. I wouldn't ever send a vegan kid out with the expectation that they can ask for special things. It's a "You get what you get and you don't throw a fit" thing for me. Now I do "intercept" or tell my kiddo not to even tough the nutty things. Because of allergies...
  23. StephanieL
    Dr. Fassano does NOT follow this criteria for children.
  24. StephanieL
    Unfortunately, no. Most will say no positive biopsy, not Celiac. They may say latent Celiac (waiting for damage basically) but not Celiac. I would not change anything till you see the GI. There is a list of "what to replace" here. I'll try and find it when I'm on a real computer later.
  25. StephanieL
    I would do the scope. There is a chance that in the future you would be really wanting a "baseline" to look at how things are improving (or not improving). As Blessed Mommy said, all first degree relatives (regardless on symptoms) should be tested and continue to be tested every 3 years (that's the current recommendation). As for a Dr. who won't nullify...
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