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StephanieL

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Everything posted by StephanieL

  1. StephanieL
    We are gluten, dairy, egg, peanut and tree nut free (and some others but you get the picture ) What other sensitivities do you deal with? I can point you to some alternatives if she will lose it without subs for a few weeks. I will say that cheese subs really are an acquired taste and going from "real" to a sub in one day is tough. It wasn't for a month...
  2. StephanieL
    I think I would start with eliminating all dairy. ALL of it in any form. Usually a 2-3 week trial should give you an indicator if that is the issue. I'm not sure where I would go from there. I'm so sorry as it sounds like you have been through the wringer with this all. I also hear you about the lack of a ped GI. Right now we don't have one either. I ask...
  3. StephanieL
    Okay... so.... 1) she's eating eggs (so she's not allergic) 2) can eat wheat with no immediate reaction (not a wheat allergy) 3) can't do dairy What are her signs and symptoms that are making the Dr. believe it's Celiac? I'm a little confused I'll admit. From your story you aren't going to get any accurate results from the testing the Dr. did because...
  4. StephanieL
    Having Celiac disease is not a gluten allergy. They are two very different things. Also there isn't an actually gluten allergy, it's usually a wheat or barley allergy, not gluten. As of now, only one of the people in my home has Celiac disease though that can always change. The way genetics works is that if they have the genetics they can convert to having...
  5. StephanieL
    No. It will only show if there is damage and possibly how much.
  6. StephanieL
    I'm not sure why they chose that test but I assume it was to show that removal of foods that showed high IgG levels was't helpful. Here's a little on IgG testing: "I see patients every week who have had IgG testing for food allergy, in which their blood was tested for IgG antibodies instead of IgE antibodies (the antibodies typically associated with allergies...
  7. StephanieL
    Just to tough on this, what your Dr is suggesting is known as skin prick tests (SPT) and are for allergies, not intolerances. This testing along with blood testing for allergies is only about 50% accurate for a positive which is why it isn't recommended to diagnose a food allergy though many Dr's do which is really sad and wrong! For example, when my son...
  8. StephanieL
    First off, I am not a moderator on this board Just a member. Different people see different reasons to test things out as far as intolerances are concerned. I understand being sick and tired of not feeling well and the desperate search for ANYTHING that will make them feel better and I think these tests prey on that assumption unfortunately. I feel...
  9. StephanieL
    Intolerance testing isn't scientifically sound, hasn't been peer reviewed or accepted in the medical community. Even IgE allergy testing has a super high false positive rate which is why it isn't suggested to test for anything unless there has been a known reaction within 20 minutes to 2 hours of ingesting the suspected allergen.
  10. StephanieL
    If you are going to test, do it now. You can't be off gluten for the testing so if you push start now. It doesn't sound like allergies. Allergy symptoms appear 20 minutes to 2 hours after eating and include things like nausea, vomiting, hives, swelling, breathing issues, and so on. Also, in the absence of a really spot on allergic reaction, Dr's shouldn...
  11. StephanieL
    The research in oral desensitization for IgE allergies is still very new, very experimental and very undetermined as far as if the patient will remain not allergic. It also requires life long (as far as they can tell now) maintenance daily to weekly. Also, there isn't a lot of research on FPIES. They don't even have a billing code for it so it's not recognized...
  12. StephanieL
    It took over 3 years to get down to "normal" and has jumped back up unfortunately It can take a while. My DS's did come down at the 6 month mark but it wasn't anywhere near what I was hoping it would be. I would start with only food from home for now. It takes away a lot of the questioning.
  13. StephanieL
    Those numbers are really high. I have never seen numbers that high. What signs and symptoms was your child having that lead you to the testing? I am almost wondering if there wasn't a lab error.
  14. StephanieL
    With all the - blood work, why would you go to an invasive procedure over a skin biopsy? I would think that would be less traumatic over the endoscopy, no? I know the child life people are great. They can help give you ideas how to proceed with informing him what's going to happen.
  15. StephanieL
    Can you do Sunbutter? I know as a mom with a peanut allergic and kid with Celiac, flying is a scary thing. Peanuts are a problem but peanut butter is so messy and really can create a danger for other kids! I know you have to do what you have to but perhaps if you could maybe look for that alternative it may also help out another family who is scared to...
  16. StephanieL
    I would get a derm to biopsy around the DH site before I would do and endoscopy. If it's + for DH then that means it IS 100% a case of Celiac.
  17. StephanieL
    My DS has FPIES as well. I've never heard of constipation being an FPIES thing. It's typically the opposite with profuse vomiting and diarrhea with a crash at the end. I also wonder if it wasn't something else going on. Also, you don't have to end in shock to have FPIES.
  18. StephanieL
    With Gemini's AMAZING help, we were able to figure things out. DS has -multiple life threatening food allergies -FPIEs -Celiac with levels that would not come down The not falling levels was driving me crazy and Gemini talked me through things and we went the endo route. After several bad visits I went with the calling about levels and now DS has...
  19. StephanieL
    Yeah, that! I actually called different endo's offices and asked the nurses what the normal values were for that office. If they gave me .3-3 I said thanks and went to the next one. When I finally found one that used the CURRENT recommendations, I started there.
  20. StephanieL
    1) No food unless it's from home. 2) All art products are vetted by me. 3) If the school is archaic enough that they allow outside foods treats for birthdays, you get 48 hours notice. 4) Being there to monitor class parties. 5) Access to bathroom as needed.
  21. StephanieL
    I am not aware that there are different reference levels for kids. I would think over the 3-4 Ped Endo's we've been with someone would have mentioned this as well as it being indicated on the results.
  22. StephanieL
    Depending on the person and how quickly you are trying to figure stuff out the general rule is to start a new food and eat it for at least 3 days before introducing another one. This *should* be enough time to help pinpoint issue. If you have noticed it takes longer you can wait 5 or 7 days. A lot depends on what kinds of reactions you were seeing. ...
  23. StephanieL
    What I am saying is that there isn't any peer reviewed studies that show IgG testing as being useful. Often food logs are much better at pinpointing an issue.
  24. StephanieL
    "The anti-endomysial antibody test (EMAIgA), EMA-IgA, is very specific for celiac disease. It’s estimated that a person with an elevated titer of EMA is almost assured of having celiac disease. However, the EMA test isn’t as sensitive as the tTG-IgA test; about 5-10% of celiacs do not have a positive EMA test."
  25. StephanieL
    IgG testing isn't accurat or suggested by board certified allergists. If you have eaten them in the past without issue, you aren't allergic to them.
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