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
    Where is the recipe? Usually it's canned and it'll ask for full fat or light, sometimes refrigerated if making a whipped topping with the fat off the top of the can.
  2. StephanieL
    Leyothyroxine is gluten-free from what DS's end said. He wanted to switch DS but they don't have his dosage in that brand. The thing with that is when it is written for Levo they you get Levo as it's a "brand name" and won't be switched for another brand when written as such. We use Mylan brand and have for a few years. I do call when we change dosages...
  3. StephanieL
    Are the labs done at the same place? Have you had her thyroid tested? If those answers are yes, I would perhaps consider a gluten-free house over taking away Starbucks. She could get a prebottled drink when she went.
  4. StephanieL
    This isn't MY opinion. This was from THE celiac guy in the US. I'm not trying to debate anything just pointing out that they often do have different standards.
  5. StephanieL
    I will warn that when dealing with kids, even the top Celiac Dr's see this differently. I don't see the childs age posted but if they are younger then it's seen as a different ballgame in some regards.
  6. StephanieL
    You may be able to have Chicago look at your slides. You would need to call them. They (most likely) will not consult over the phone. There are legal issues with insurance billing and having to actually see the patient. Though once you see them you should be able to do other stuff over the phone.
  7. StephanieL

    ARCHIVED Mexican?

    StephanieL replied to cwnhokie's topic in Gluten-Free Restaurants

    Chipotle. My DS is allergic to dairy and has Celiac and eats there from time to time.
  8. StephanieL
    Accommodations carry over to college too so it may not be something now/today but may be something for the future you may need.
  9. StephanieL
    BTDT- Good luck with whatever you choose to do. We did go gluten-free after the biopsy was negative with very high + blood work. We have also had backlash from MAJOR Dr.'s in CeliacLand that said we need to challenge DS at 8 years old now because the biopsy was +. I don't know what to tell you but you can try another Dr. but it's no guarantee they will...
  10. StephanieL
    When DD started preschool we gave her gluten in home for a few days to be sure she didn't have a horrible reaction to it. Then when she started I knew she would get getting gluten containing snacks at school on a daily basis. At the winter holiday break we had her tested. She is now in K and since they don't have the same snack she is back to being gluten...
  11. StephanieL
    Microscopic blood could be a lot of things. Hugs. You can do this Mama!! Hang in there and ask all the questions you need! Many of us have BTDT!
  12. StephanieL
    Your family. Your house. Your rules. I it explain to people like this (we deal with life threatening allergies as well but it helps get the main point across). "Mom and Dad (inlaws- let your spouse explain it), I love you and I know you love us/the kids. I would not let you leave a gun sitting on our counter. I will not tolerate the same thing but...
  13. StephanieL
    I would say the milk very well could be an allergy in which case you need Epi Pens. I would very highly caution you on the actual testing for allergies. It is not recommended to test for things you have not seen an actual reaction to (like milk) because the testing is about 50% on the accuracy scale and you could end up avoiding a lot of food unnecessarily...
  14. StephanieL
    Just an FYI- You may not fine a trip to Boston helpful. We went over the summer and it was VERY costly (which would be fine IF they haden't be completely clueless). Were the labs done by he same place? Were they drawn and run at the same facility? If not, that could cause a lot of issues.
  15. StephanieL
    I can understand wanting specific answers but it sounds like your Dr. is answering thing for you but you aren't satisfied with her/his response or how they are dealing with it. If you have these issues with the Dr. perhaps you may be better off getting a second opinion? I just can't see letting a Dr. put my kid under when I am unhappy with pretty basic questions...
  16. StephanieL
    IgG isn't useful for food allergy testing. IgE is what is use for allergies and even that is only accurate 50% of the time for a positive result. There aren't any reliable tests for an intolerance other than an elimination trial and reintroduction.
  17. StephanieL
    As the others have said, the #1 thing I would do to get the blood is to go to the children's hospital. That is their specialty. They can get it.
  18. StephanieL
    I've gotten Enjoy Life cookies and bars for $2/box!
  19. StephanieL
    Is your home 100% gluten free? Do you check for x-con with all the ingredients you will use? You can check out cottage industry laws in your area. You usually need to keep all products you use separate from your own home baking/cooking supplies. There are other things you need to do to but for many storage is an issue. Also, I wouldn't be surprised...
  20. StephanieL
    Amazon Pantry is a service where you can send a large box anywhere in the US for $6. We used it on trips to Boston and Orlando in the past year. We did have fridges at both hotels so I sent things like hemp milk, cereal, bread and sunbutter. Snacks too (chips and tortillas and the like). It is well worth the $ for the peace of mind to know my DS had food...
  21. StephanieL
    Intact villi means you don't have blunting/destruction of the villi which is the characteristic they are looking for for a positive Celiac biopsy. It also pays you are negative for those other issues as well.
  22. StephanieL
    The definition of anaphylaxis is the involvement of more than one body system so if GI is the "only" thing, also if it is delayed (more than 2 hours after ingestion) then I would agree it's more an intolerance. Again, how you proceed is up to you and your Dr. to figure out (I am not a Dr, just another Mom). The "guidelines" I spoke of are specific for allergy...
  23. StephanieL
    Dr. Fassino did research on this and I do believe it came down that it doesn't matter really. Open Original Shared Link It's the second question in the article. There is a more detailed research paper on it by him but I just did a quick search Here's another link: Open Original Shared Link
  24. StephanieL
    For allergies they recommend baked milk (1 cup in a recipe baked at 350 for 30 minutes) then partially baked (like on pizza) and then straight once they believe a kid has outgrown an allergy. The immune system doesn't change very rapidly so our Dr. only does testing once a year and trials based on that perhaps even more spread out. All that said,...
  25. StephanieL
    There are medical drink supplements that may help. My extremely thin kiddo is on something called Splash by Neocate. He's suppose to be on 3 a day but then I found he wasn't actually eating (they are also $7 per so it's not cheap). It is an acquired taste as well. May be something to look at.
×
×
  • 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.