Jump to content

StephanieL

Advanced Members
 View Profile  See their activity

  • Posts

    1,217

  • Joined

  • Last visited

  • Days Won

    13

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by StephanieL

  1. StephanieL
    There are no accurate tests for gluten intolerance.
  2. StephanieL
    There is no test for gluten intolerance which is why the Dr. said that. If she is not eating gluten now there is no test that can be done to determine if she has Celiac disease or not. "They" suggest a MINIMUM of 6-8 weeks on gluten for testing to be considered accurate. Also, eczema doesn't mean you child has an allergy. If eczema is the *only* (I...
  3. StephanieL
    I will ALWAYS and forever be thankful to Custom Probiotics! Even after going gluten-free for months my DS was still having issues. After 3 days on Custom he was "normal" for the first time in his life!
  4. StephanieL
    I'm sorry for the rude behavior. In my experience it usually takes 3-5 day for the pharmacy to get a hold of the Dr. and get a refill. Yes, some are much faster and yes there should be someone covering for the Dr. but it sounds well within the norm on the time. As a patient there are things you need to do to be sure you get what you need as well as responsibility...
  5. StephanieL
    Truth! lol Perhaps it was his behavior at the appt. that made them determine otherwise! lol (Kidding, he was 100% perfect for them when we were there!) I agree that a scope on a kid is more likely to be false negative. I don't get it. I don't understand but I am also in a very surly place with Celiac disease, Dr's and gold standards!
  6. StephanieL
    They gave no reason why it doesn't apply to kids. Not sure if it's a legal "we didn't study it in kids" or what.
  7. StephanieL
    They will tell you that this criteria DOES NOT apply to children.
  8. StephanieL
    If your Dr. has dx you and instructed you to go gluten-free, you have a dx. Many Dr. are willing to dx a first degree relative of a dx patient by blood alone. I would seek out such a Dr. Perhaps even your Ped has enough information to do so? You should be able to find studies on this way of dx.
  9. StephanieL
    Soap and water is best.
  10. StephanieL
    Drawing the genetics WITH the panel would be one thing but to do just the genetics means if it's + it'll still require another draw. Also many insurance companies won't do the genetics without the panel first. Lastly, if a parent has Celiac, the chances of a kid having the gene is pretty high which doesn't tell ya much but that there is a predisposition...
  11. StephanieL
    Any first degree relatives should be tested every 3 years OR if they have symptoms. Theres no way to know for sure they don't currently have it unless they are tested.
  12. StephanieL
    If you have it, the kids chance of having the gene is fairly high so I'm not sure I would spend the money on doing it if your insurance doesn't cover it. We were told not to bother with the younger sibs because of the same reason. It isn't diagnostic so it won't really help for anything other than curiosity.
  13. StephanieL
    If I had the choice of my Vita mix or my Kitchen aid, I would splurge on the vita mix hands down! I think for most things I do I could get away with a hand mixer but my vita mix....pure gold! Can grind gluten-free flours, makes soups you would swear had a quart of cream in and makes a mean dairy free buffalo chicken hummus dip and so much more!
  14. StephanieL
    People don't know HOW to make food safe for you esp if you are as sensitive as you say you are so why would you want that? My family doesn't make anything safe for my kid (who deals with more than Celiac- he has life threatening allergies to food so they could kill him). They have never tried. They don't want the responsibility and honestly, I wouldn't...
  15. StephanieL
    I am very sorry for all you have been through. Honestly, it sounds like you need some therapy to deal with issues OTHER than your Celiac diagnosis.
  16. StephanieL
    There is no 100% way to separate the yolk from the white. Also there is not true way besides removing something from ones diet to figure out an intolerance. It's true that the protein in all bird like eggs is similar enough that they usually all cause an issue (just like with milk- if you have a dairy allergy you most likely can not tolerate any other...
  17. StephanieL
    First off your language is pretty derogatory and rude and perhaps changing that may help you get further on forms and in life in general. Calling anyone a re%$#d is truly offensive. You aren't entitled to a free meal. You aren't entitled to everything everyone else has. People are inviting you to thing, they want you there. So what if you have to take...
  18. StephanieL
    We bring our own or eat before. Whichever DS prefers.
  19. StephanieL
    I doubt your tTG would have gone up from a single sip of beer. I wouldn't worry.
  20. StephanieL
    Except for the continued elevation in the tTG's and the fact that he's skin over bones, he's great. We are leaning towards do nothing now. There are logistics to doing a challenge. Lisa, I said this exact thing to them. I feel like a challenge has us jumping from A to C completely missing any information from step B ( which is kid 4+ years on...
  21. StephanieL
    One Dr. wants a minimum 4-8 week challenge with scope at the end. One said with an initial (4 +years ago) tTG of 122 with it falling to 78 after 6 months and continuing to fall that it is Celiac and even without a + biopsy we can be sure it's Celiac and to carry on. No one can give me information on the variation in the tests.
  22. StephanieL
    But if lab A and lab B are using the same test for the same thing- shouldn't the results be similar? Perhaps a few points off but a compleat negative vs. a positive? Also I realize in a perfect world all the labs would be done at the same place but the reality is that Dr's change, insurance changes, labs covered change and that's life. There are standards...
  23. StephanieL
    It would be a weak positive at Mayo but that was the local (also known around the country). Which it shouldn't be after 4 years gluten-free. Which is why we went to the top Doc and all that jazz.
  24. StephanieL
    There is a range of normal. Sure. But how do 2 tests 10 days apart show negative results and positive results.
  25. StephanieL
    There was no gluten ingested in the week and a half. We were told to go to Mayos lab by one of the top Celiac Dr's in the world. We aren't talking the difference between a few points. At MINIMUM we're talking 15 points different. Now I'm pretty up on things and that margin of error seems unusually hight to me when the specificity of the test is so high. I...
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.