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StephanieL

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Everything posted by StephanieL

  1. StephanieL
    Again, it's only been 9 months. I wouldn't drive yourself crazy just yet. I know as a parent you want to make it right ( we are at 5 years gluten-free and still not "normal" with labs) but you have to remember the damage took 10 years to happen and while it shouldn't take 10 years to get better it may just take more time. Hugs!
  2. StephanieL
    They may not mean anything in the "you have it worse" department but testing for specific numbers does help them see the trend in the numbers to be sure they are falling (specifically with the tTG) and that is usually the one most Dr's now do to monitor compliance (though again, debatable).
  3. StephanieL
    What are you in the mood for? We are D, E, PN, TN and gluten free. I have recipes for just about everything! The easiest and biggest hit with my kids is Monkey Munch which is Chex Muddy Buddies but with Sunbutter and Enjoy Life chocolate chips! Yum!
  4. StephanieL
    I have no way to say yes or no but I do believe these are the strips many manufacturers use. I can't answer definitively though because my DS is still having issues but we did find several products that tested + that we removed from him diet at that point. Sorry I can't be more specific.
  5. StephanieL
    I have NEVER seen results like that. I think it is more likely that was an error. We've had these tested run at several labs and many stop at 100 and some at 200 but I haven't ever seen over 300 in all my time in Celiac land! OP- We did the same thing. With levels over 100 and only being 9 months gluten-free (and 11 and with no signs and symptoms...
  6. StephanieL
    If you suspect those are the three things that it could be, you give them one at a time (potentially for several days in a row) and see what happens. When the results are unclear then a food diary is typically they way these things are figured out. It may take some detective work.
  7. StephanieL
    A "true" IgE mediated allergic reaction happens within 2 hours of ingestions. Things like eczema and the like are NOT allergic reactions but more an intolerance. There is a big difference between those two things (though the treatment is the same- avoidance). Again, if the allergist tested for those things, a negative result is 90% accurate that it is...
  8. StephanieL
    A food caused allergic reaction happens within 2 hours of ingesting and includes things such as vomiting, hives, breathing difficulty, other GI issues. A biopsy does not give any indication of a food allergy. If the allergist did testing, was it blood testing or skin testing? If they said those were normal- they are 90% accurate for a negative result. ...
  9. StephanieL

    ARCHIVED Venting

    StephanieL replied to beth01's topic in Coping with Celiac Disease

    I was honestly asking a question. I am sorry if that was offensive. I am also sorry you feel so defensive as I never said nor implied you weren't taking care of your child.
  10. StephanieL
    Well allergy testing and Celiac testing are for different things and food allergy vs. environmental allergy testing are as well. It sounds like there may be some environmental allergies (eyes, congestion, sneezing). The GI issues you list very well could be Celiac related as could the rash (there is a rash that is associated with Celiac disease called dermatitis...
  11. StephanieL
    All first degree relatives should be tested so YES. Testing on the 1 year old won't be super accurate as they may not have enough damage to elicit a positive result at that age. Of what you are describing, I am not surprised the allergist didn't find anything. What you are speaking of doesn't sound like what allergy testing would be looking for. IgE...
  12. StephanieL

    ARCHIVED Venting

    StephanieL replied to beth01's topic in Coping with Celiac Disease

    I am really interested in seeing where there is any information that there is gluten in drywall. I have looked at MSDS info and have never seen it and the "They told me so" isn't reliable. The dust created would be a potential issue if it's not cleaned up properly (walling it all, using masks if directly working with it and so on).
  13. StephanieL
    What do you do at a restaurant? If they don't have a dishwasher then I would consider hand washing it but if they have one I would carry on as normal.
  14. StephanieL
    Perhaps you need to look at other possibilities. Wax from soy would be more expensive. They don't add things that cost more when they don't have to. It's not good business practice. As others have said there are many here with soy issues (including anaphylactic reactions to it) and there hasn't been an issue. Perhaps it's something else.
  15. StephanieL
    Have you contacted them. They'd look to be coming up on gluten free lists I have found. Open Original Shared Link
  16. StephanieL
    If you look at your diet, what are you eating in large amounts that you would need a replacement for to be vegan? Perhaps people here can help with suggestions that may help you return to being vegan and that may help some of the anger you are feeling? ((hugs))
  17. StephanieL
    i am not telling you to disregard dr.'s orders outright. Do you think it would be possible to speak to a nutritionist? I haven't had a lot of luck with them myself but perhaps you can find someone who could help you manage the vegan thing and Celiac. You can get plenty of protein with plants, nuts and soy if you wanted to and are really committed to staying...
  18. StephanieL
    The recommendation is that they eat a "normal" diet and test every 2-3 years OR if they show any signs and symptoms. As long as you are safe in the house wrt food prep or he buys at school, not an issue.
  19. StephanieL
    I think it's important that the same diagnostic stuff that applies to adults doesn't always translate to kids. I know I have said this in other places but many many Dr. won't dx a kid without a + biopsy so saying to base it on blood alone isn't always easy. How long have these leg/feet issues been going on? My DS had that ALL THE TIME and with everything...
  20. StephanieL
    You need to be consuming gluten for the blood work. PLEASE start eating it again. Also if your going to do a biopsy you need to keep eating it UNTILL you have the biopsy done. Your levels wouldn't have drop significantly (if at all) after just 2 days. Good luck and I hope you get some answers soon!
  21. StephanieL
    I am not saying that this is common but we have had labs drawn at the same time sent to 2 labs and come back one positive and one negative. Again, not normal by any means but I would start with getting it sent to 2 different places when drawn at the same time.
  22. StephanieL
    I would look into the labs before starting to explore other issues. It isn't about them being taken the same day, its about what lab was used. Was it drawn at the same Dr/hospital? If they were different labs they may use different testing methods and get vastly different results (though not common it can happen). I would see if they can do another...
  23. StephanieL
    Were these labs done through the same laboratory? That can be a big difference. What did the biopsy say?
  24. StephanieL
    It can be. It's not even a year yet. I would also approach her about her diet and be sure she understands the importance of her diet.
  25. StephanieL
    Have you contacted them to ask if there is soy in it? Cuts pump blood out of the body to protect against infection. I wouldn't think there would be any/much introduction systemically from putting it on a cut.
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