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
    No. There is no such thing as an gluten allergy. There is the autoimmune condition of Celiac disease. It is NOT an allergy. And allergy is an immediate (within 2 hours of ingestion) condition causing things like vomiting, hives, diarrhea, breathing issues, constricting of airways. As I said, there are many people here who do not test positive for Celiac...
  2. StephanieL
    There are things it could be that aren't an allergy or Celiac disease. There is something called "Non Celiac gluten sensitivity" that many people believe is the issue for themselves. It is when you have issues caused by gluten containing foods but the Celiac bloodwork and endoscopy say it isn't caused by the autoimmune disease. There are also people...
  3. StephanieL
    There isn't any such thing as a "gluten allergy". You may test positive for a wheat allergy but you would most likely already know if that was true as the symptoms of an actual allergic reaction happen from immediately after ingestion to about 2 hours after. That said, nothing in the bloodwork you posted is allergy testing.
  4. StephanieL
    Earth Balance has a great butter sub (I use the soy free one). We have a dairy allergy and I know my way around subs! lol Also, Flishmans Margarin NO SALT is dairy free if you don't care about soy. It also depends what you are using it for sometimes.
  5. StephanieL
    IgE allergy testing is only about 50% accurate. The signs and symptoms you are describing, how soon after wheat ingestion are they happening? IgE allergic reactions happen immediately up to 2 hours after ingestion. Of those things you ave mentioned, the shortness of breath would make me think perhaps an IgE allergy BUT it would also depend when it is happening...
  6. StephanieL
    That can happen with any medication but has nothing to do with it's gluten/gluten free status. Two different issues though I understand your dislike of it with the result you had!
  7. StephanieL
    Levothyroxine is a "brand name generic" and gluten-free per our Endo. DS can't take it because they don't make it in the dosage he needs but it is what his Dr. would have liked him on and will change him to once he's bigger and we need to up his dosage.
  8. StephanieL
    So they did look at her esophagus as well, not just stomach? You're report doesn't mention anything about anything but the lower end so perhaps they weren't checking the upper? And patch testing is a long shot and something Dr's do as a last ditch effort. They jury is still out on if it's even helpful so I'm not surprised that they don't see it as something...
  9. StephanieL
    Have they scoped her for EOE? I do believe dairy is often an EOE trigger. Allergy testing when there isn't a clear "OMG it's an allergic reaction" isn't recommended. Basically if you don't see hives, breathing issues or immediate (within 2 hours of ingestion) reaction, an allergy test isn't going to be helpful.
  10. StephanieL
    Feel better!!!
  11. StephanieL
    It is their home and if he wants to eat gluten in it that is his choice. I'm sure you've heard "It's hard to teach an old dog new tricks." and that's very true. Especially when it comes to something as fundamental as food. It doesn't mean he doesn't love you or care. It means he's resistant to change. Don't eat there. Eat before you visit them and...
  12. StephanieL
    Just an FYI but hand sanitizer doest not remove gluten from hands. It just makes it cleaner gluten.
  13. StephanieL
    I am thinking that this is a case of "not enough/any protein" that would render it a hazard.
  14. StephanieL
    I just wasn't sure if there was an actual scientific reasoning to this as I see it mentioned often but haven't seen anything stating "it's harder in kids". Also, just an a side not, Fassano's 5 pillars DO NOT apply to kids so that's kind of a moot point Clear as mud! Right? lol
  15. StephanieL
    Are you sure there is gluten in the wheat grass part of the plant that would cause a problem? From what I remember of plants the wheat and the wheat grass are two different parts.
  16. StephanieL
    Sorry OP, I have to ask this on the "not easy to dx", I hear this all the time here. Is it really that difficult or is it that they may not have as many positives as older people simply because there hasn't been enough time to cause enough damage?
  17. StephanieL
    Looks like it's happening symmetrically which would lead me to agree with the Dr. you saw. I would try and get it under control now what a good lotion after baths (no more than 2x week with no soap) and wet the skin before you apply lotion other nights.
  18. StephanieL
    We have used Medic Alert since DS started preschool. There is a special number to identify your kid in case of emergency they can make a call and get pertinent medical information. It's also a pretty well known symbol so people know "Hey there is some kind of medical issue here" which is what you want them to know/get. DS has had it removed from his wrist...
  19. StephanieL
    Be prepared. That's really the key in dealing with food issues. This means having food and cleaning supplies with you at all times! I'm sure you know kids snack all the time. Just be ready for it and ready with hand wipes if no hand washing facilities are available. Washing hands OFTEN is a great thing to teach them too. The cleaner the hands, the less...
  20. StephanieL
    lol No way to tell is there. Maybe it was removed for testing?
  21. StephanieL
    Do you know 100% there isn't a peanut allergy at the school? That information isn't suppose to be shared so there is the potential that there is one unless you know the medical history of every child there. It may also be something the school wants as a way to entice parents to the school (there are those who do feel more comfortable with a ban). I am...
  22. StephanieL
    DS had allergy testing done (known allergies) and DH asked for a Vit. D level on him. It was 0 so they sent us to an endo who did the Celiac teasing which was strongly +. After a second opinion we did the biopsy which was -. Dr. #2 called Fassano who said we could scope every 6 months or go gluten-free. Went gluten-free and there was not change till DS...
  23. StephanieL
    I would get a second opinion at the very least. Sometimes a new set of eyes can really help and it seems as if your Dr. has a bit of an "infallible" complex if they weren't taking your concerns seriously till they were made aware of your plans for a second opinion. I'm sorry. It is so hard when they are young and you are trying your best to be a strong...
  24. StephanieL
    I will start with we don't deal with JRA- we have a lot of other issues here but not that. I would ask a few questions first. What were her initial labs? How long has she been gluten-free? Have her labs been drawn at the same place? We have had consistently high levels after 5 years gluten-free. We are VERY strict (calling manufacturers, only...
  25. StephanieL
    It's really going to depend on the recipe. Usually when its the boxed kind (not in a can) I have seen recipes call for "coconut beverage". Without seeing the recipes though it's tough to call. We've been dairy free because of life threatening allergies for 8 years here so I've seen both used.
×
×
  • 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.