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squirmingitch

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Everything posted by squirmingitch

  1. squirmingitch
    We can't tell anything without the reference ranges Carey.
  2. squirmingitch
    You're welcome! I know you're overwhelmed right now. I don't think there's a single one of us who wasn't in the beginning. I recall all out panic and a plethora of information muddling up my mind not to mention the brain fogged mind and unbelievable fatigue that existed from gluten. I can promise you it gets better!!!! LOTS better, but it does take time. ...
  3. squirmingitch
    I use Benadryl gel & have never had problems with it. No gluten ingredients. Same goes for CVS Calamine Plus Itch Relief also for Max. Strength TopCare Hydrocortisone 1% with or without aloe.
  4. squirmingitch
    I think the OP must have mis-typed & the endoscopy is on July 7th instead of June 7th. Open Original Shared Link
  5. squirmingitch
    This is the full serum panel: Anti-Gliadin (AGA) IgA Anti-Gliadin (AGA) IgG Anti-Endomysial (EMA) IgA Anti-Tissue Transglutaminase (tTG) IgA Deamidated Gliadin Peptide (DGP) IgA and IgG Total Serum IgA Also can be termed this way: Endomysial Antibody IgA Tissue Transglutaminase IgA GLIADIN IgG GLIADIN IgA Total...
  6. squirmingitch
    A couple crackers per day or slice of bread...whatever floats your boat. You might want to do it before bed --- some find that helps to keep the worst of the effects while you sleep so you're a bit better during the day time.
  7. squirmingitch
    Ohhhhhhhhhhhhhhhhh noooooooooooooooooooooooo!!!!!!!!!!!!!!!!!!!! You likely would have had higher numbers or perhaps another positive if you had been eating gluten & not gone off of it. WHEN you see the GI, it's very important to tell him/her that you had stopped eating gluten 2 weeks prior! See: Open Original Shared Link
  8. squirmingitch
    You need to be referred to a GI & have a complete celiac panel done on you. KEEP eating gluten or you will get false negative results!!! Your TTg IgA is high period. There is no "putting it into context" with a total IgA. We have a member who has Kaiser. I'm sure she will be on soon to answer you. I know from reading her posts that Kaiser does...
  9. squirmingitch
    Good deal. Please keep us posted.
  10. squirmingitch
    You were told this by whom? Did they state why they say it's not really gluten free? Check it out: Open Original Shared Link
  11. squirmingitch
    Here's one recommendation for the gluten challenge. Open Original Shared Link Hang in there, stick to your guns & advocate for yourself. Take print outs to the doc that show him he should have had you eating gluten. Maybe he will get educated by that. Let us know how things go please. BTW, we're here for you for any screaming, crying...
  12. squirmingitch
    You're going to have to become a label reader. Our motto is: EVERY LABEL, EVERY TIME Every time because food formulations can change. Plenty of celiacs have gotten glutened because they bought & ate something that the formulation on had changed. It's a matter of habit. You want to keep yourself in the habit. For instance, I buy Hunt's Tomato...
  13. squirmingitch
    This is such a perfect post.
  14. squirmingitch
    And one thing that will be perhaps your biggest ally in this disease is a sense of humor!!!!! If you can laugh about it you're half way there! I will echo what Gemini said about carbs. I needed carbs!!! I STILL need carbs!!!! Mucho carbs! I chucked down the carbs like there was no tomorrow, actually I still chuck down the carbs. If I cut carb intake...
  15. squirmingitch
    GFINDC has good info. for you & I echo the no cutting gluten until all test results are in. Too many times people have cut it too early & ended up screwing themselves. Things get better!!!! Everyone is individual so recovery is individual. Don't base your weight gain time on MY weight gain time okay? So happens that it took me a LONG time to...
  16. squirmingitch
    I had weight loss prior to dx. I take it you are small like I am. I was always 103 & too skinny but never could gain & prior to dx I had fallen off steadily to 100, then 99 then rapidly until I was 91 lbs.
  17. squirmingitch
    They always say it looks like some kind of dermatitis. That or they say scabies, poison ivy or oak, eczema, blah, blah, blah. The question is...... did she do the biopsy correctly? Did she take it ON a lesion or adjacent to one? DH is sensitive to iodine so while you wait, you can try going low iodine. Here's a link: Open Original Shared Link ...
  18. squirmingitch
    It is impossible to say based on one photo that is not that close up. Even if it were, there are a ton of rashes in the world. Please describe more of how the rash acts. If you want to get a dh biopsy then you should continue eating gluten & find a dermatologist experienced in doing dh biopsies and have them do a biopsy. Here is a link explaining...
  19. squirmingitch
    It's best to get the full panel especially when one comes up with results like your son did. We have members who only test positive on the DgP and they are adults which is unusual because usually that's the one that only shows positive for kids. If you can get your Doc to order the missing pieces of the panel for your son than that would be a great step in...
  20. squirmingitch
    Are you in Canada or the UK? Or are you in the US? I ask because you talk about the long wait for the GI. Is your insurance with a PPO or can you go to any doc you choose? I think he should now have the full celiac serum panel while you wait for the Gi appt. This is the full panel: Anti-Gliadin (AGA) IgA Anti-Gliadin (AGA) IgG Anti-Endomysial...
  21. squirmingitch
    You need to get copies of your records from the GI who dx'd you. That way you will have them, you will know & you can take them to anyone else at any time. Gee, that first GI who dx'd you doesn't seem so bad now huh? Maybe you ought to go back to him. Tell him you want an EGD. Really, that's only needed if you feel you're not healing. Otherwise you...
  22. squirmingitch
    They did it wrong then. it has to be taken & then sent to pathology NOT looked at under a scope in the derms office. Read threads on the dh section & you'll find much info on the correct way to do a dh biopsy. 60% of those with dh test negative on the celiac blood work. Just so you know.
  23. squirmingitch
    If she doesn't have a bonafied dx by a MEDICAL DOCTOR then she will not be protected at school & later in college.
  24. squirmingitch
    Personally I can't do even purity protocol oats BUT even if I could I wouldn't trust gluten-free Cheerios with a 10 ft. pole. You might want to read this & follow the links contained & other articles listed regarding the subject: Open Original Shared Link
  25. squirmingitch
    When you got the biopsy for the rash did they do it for dh? A biopsy for dh is NOT taken ON a lesion but ADJACENT to one.
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