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StephanieL

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Celiac.com - Breaking Celiac Disease News & Info:

Everything posted by StephanieL

  1. StephanieL
    Mylan is gluten-free, Lannett is also on the list of gluten-free levo.
  2. StephanieL
    A food log is the only way to nail down sensitivities. As mentioned there are currently no tests that can measure for them. IgG mediated testing is a way to part people from their money and nothing more unfortunately as you have seen these aren't of use.
  3. StephanieL
    I would 100% do the scope. You have slides to 1) confirm and 2) compare incase the gluten-free diet doesn't seem to be working. It's not fun for Mama but it really is best to have all the info!
  4. StephanieL
    I am not saying the lab isn't accredited but the tests themselves are not accurate in dx. an intolerance or sensitivity. Do you have that done on your own or did one of your Dr's suggest it? Again, I only ask because the science isn't there to support this kind of testing sadly. It would be nice if there were something but that's just not the case. Do...
  5. StephanieL
    There are not any reliable food intolerance tests so I'm not sure who you had these done through but there's nothing scientific backing them and they typically have you eliminate foods that aren't really an issue. Are you working with an endocrinologist as well as a GI Dr? Have they sent you to a nutritionist? I know many of them are hit and miss as...
  6. StephanieL
    Without reference ranges for the IgA there's no telling wether the IgA or tTG are anything worth while. I think your best bet is to wait on a call from them for interpretation. I know that's hard but really, they are the ones with all the necessary information.
  7. StephanieL
    A year isn't a ton of time of time for healing. I would see how the next set of labs looks. It was 5 years after dx before the Dr's were really even a little worried about my kiddos growth and adding a nutritional supplement.
  8. StephanieL
    Do the biopsy ASAP and keep her ON gluten till it's done. You will always have lingering thoughts if you don't. Also if you are in Boston, one of the leading Celiac experts is there. He'll recommend the biopsy I'm 99% sure!
  9. StephanieL
    A scope is always considered the gold standard for Celiac testing.
  10. StephanieL
    They make a lot of products. Your best bet would to be email/call them and ask about specific products.
  11. StephanieL
    Growth charts aren't really all that accurate and of those that are- the ones from the WHO are much more accurate and up to date. I would check those if anything. Also, it's not the chart that you should look at (as it's a VERY loose guide). What YOUR KID'S curve is is what's important. Are they trending upward along the same lines? You have...
  12. StephanieL
    I would call and talk to them. Sometimes you get better response from them if you do. You could also always add peanut butter cups/mint flavoring and chocolate chips to the vanilla slow churn if you are that concerned.
  13. StephanieL
    I love Edison Grainery! They have amazing products and are great to work with. They have an amazing chart of what is processed in which areas of their complex. Very through! Open Original Shared Link
  14. StephanieL
    I would much rather see gluten be labeled as a "Top X" .
  15. StephanieL
    This may be of interest as well. Open Original Shared LinkOpen Original Shared Link
  16. StephanieL
    I was asking because they are two completely different things and work by different mechanisms so I was unsure of which you are classified by. I think we all feel for any parent dealign with issues of a kiddo not feeling well. I think this is a "look for horses not zebras" kind of thing. It's hard not to go down a rabbit hole as a parent (or anyone...
  17. StephanieL
    Yes. I am aware of that. From a labeling perspective oats are not under the gluten umbrella.
  18. StephanieL
    1) Oat's are not a gluten containing grain but often comes in cross contact with gluten. They may use gluten free oat grass. I don't know. 2) Gluten is NOT considered one of the Top 8 allergens in the US. Wheat would been to be listed, rye and barley (and oats that come into cross contact with gluten grains) do not need to be listed. Gluten...
  19. StephanieL
    So do you have Celiac or do you have a gluten allergy? Kids often present differently and the criteria for dx is often not the same as for adults. I'm not sure I would think refractory over other issues like thyroid or potential cross contact.
  20. StephanieL
    Have you had his thyroid checked?
  21. StephanieL
    My kid was dx at 3. Just turned 9 and still doesn't have a "normal" tTG. We have done EVERYTHING to try and figure it out. Tested every food I didn't know was 100%. Spoke to tons of manufacturers. All this in a house that was 100% gluten free. Went onto thyroid testing which was off. Started thyroid meds. I thought that was the trick. ...
  22. StephanieL
    Were all the labs (EVERY single one of them) run at the same laboratory? Were they sent out to the same center or to different places? That can change the game we have found. There are different machines with different calibrations and what is high on one may not be on another. You mentioned that they aren't treating the thyroid. This would cause...
  23. StephanieL
    This thread is over 4 years old so I doubt you'll be hearing much back but welcome to the boards.
  24. StephanieL
    Happy New Year to you too! We have been dealing with IgE mediated allergy and Celiac disease for a long time. If you have questions I may be able to help with feel free to PM me.
  25. StephanieL
    It's not about being weird, it's a privacy thing. Schools aren't allowed to disclose personal information about other students esp. if it's in relation to a disability (which Celiac is coved by). I would look at other areas before I would ask the school for that info. Seems yours takes students personal information seriously so I would doubt they would agree...
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