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squirmingitch

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Everything posted by squirmingitch

  1. squirmingitch
    Get a copy of your records. Check out the blood work that was done & check out the pathology on the biopsies. It's that simple. Did you know that over 50% of the dx'd celiacs presented with NO GI issues? Do you know there is such a thing as silent celiac where the patient has no symptoms yet there is damage to the villi? You can also ask to...
  2. squirmingitch
    I understand. Poor thing, made doubly rough because 13 is a really hard age even in the best of times. OK, at 13 she should show the damage in the biopsies. I didn't know if she was 2 or 3 yrs. old & in those cases sometimes they just plain haven't lived long enough to be damaged where the biopsies pick it up - it can be so patchy then. Gosh...
  3. squirmingitch
    Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting...
  4. squirmingitch
    Her blood panel is POSITIVE!!!! She's celiac! I don't know what in the world the GI is thinking. That's crazy! The GI obviously doesn't really know celiac. The constipation is tripping her up but celiacs can be constipated as much as they can go the other way and more than 50% of dx'd celiacs presented with NO GI issues. Keep her eating gluten until...
  5. squirmingitch
    I think GFinDC has some good suggestions for you & I know you don't want to hear this but I will ditto what he said about the Fasano diet. I think you need to be on it longer than 3 months. After all, in the trials he was part of, the diet was to be adhered to for 3 to 6 months. I think the majority stayed on it for around 4.5 months. Really, I think...
  6. squirmingitch
    The steroids can cause false negatives on both the celiac blood panel as well as the dh biopsy too. Here is the current full celiac 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...
  7. squirmingitch
    60% of celiacs with dh test negative on the celiac blood work. Fact. Open Original Shared Link Many people with DH have no digestive symptoms and only about 40% of them have the positive blood tests (serology) for celiac disease.
  8. squirmingitch
    Has your derm ever done a dh biopsy? BTW, it's not taken ON a lesion, it's taken on clear skin adjacent to a fresh lesion. I bet your derm doesn't know that. I bet if you ask for a dh biopsy he will take it right on top of a lesion. Ditch him & get a derm who knows about celiac & dh & how to properly take a biopsy for it. The antibodies can...
  9. squirmingitch
    Yes, there are other grains that have gluten but they don't have the TYPE of gluten that affects celiacs. Celaics can not have the gluten in wheat, barley, & rye. Corn has gluten but it is not the kind of gluten we react to. I actually use corn gluten in my garden as it prevents weed seeds from sprouting. LOL! Hey, it works great! Read these: Gluten...
  10. squirmingitch
    I say good for you!!!! There are many skin conditions associated with celiac disease so it's not too awfully surprising about the psoriasis but the psa must be an amazing relief for you! Congrats!!!!! You might be interested in a Paleo diet. Elana's Pantry has some outstanding recipes. She has both celiac disease as well as MS. Open Original...
  11. squirmingitch
    Kricket, you asked earlier about how long to try the diet. I would say give it a good 6 months and be sure not to get cross contaminated. Be very strict with it. Read our Newbie 101 pinned at the top of the Coping Section to help you learn the diet & cross contamination concerns.
  12. squirmingitch
    David, have you had the celiac blood work done? You need to have that done as well as the endoscopy. We've had a rash of people lately it seems whose docs do the endoscopy first & then the blood work after the endoscopic pathology result comes back. That's backwards especially when the patient is told to go gluten-free after the endoscopy. Like GFinDC...
  13. squirmingitch
    Carl do you eat gluten free processed food made with rice flours? You know, cookies, crackers, cakes, breads, pastas?
  14. squirmingitch
    My question is did they specifically do biopsies looking for celiac? You need to get copies of all your health records & especially labs/pathology. They may have only done biopsies for Crohn's. When they send those to pathology they state what they're looking for & rarely does the pathologist look for anything other than what the doc has stated he...
  15. squirmingitch
    If you're sure you don't want to have kids then that's fine. I am childless by choice but didn't know I had celiac until I was 54 so it was a moot point for me by that time. So the only thing I will say now is that if you do test positive on the blood, ask your doc to dx you with celiac. If the doc refuses based on blood alone, then you can ask to have...
  16. squirmingitch
    Make sure to read the Newbie 101 & follow the links contained within. It will help you learn how not to get glutened.
  17. squirmingitch
    Here's the current full celiac 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...
  18. squirmingitch
    Meg, which test of the full panel didn't she run? Did she say or did you ask why? Did it have to do with your insurance? I know some but not all, insurance will only allow a GI doc to run the full panel - if that is the case with yours, then if your blood comes back negative, I would request a referral to a GI who specializes in celiac.
  19. squirmingitch
    Ditto this!
  20. squirmingitch
    It doesn't matter if you urp it up because the moment it goes into your system it starts the immune reaction. The pasta doesn't have to sit in your stomach for a given period of time in order to make your system react. There are no better or worse gluten containing foods but you don't have to eat a bowl of pasta every day. A 1/2 slice of bread or a cracker...
  21. squirmingitch
    That's correct Mark. It was the darndest thing to run across it & it was on reliable medical sites, not just some yayhoo writing an article. It was so weird because in all the research I've done about dh, this was the first time I had run across anything describing that & associating it with dh. I wish I had bookmarked it but I was researching some...
  22. squirmingitch
    Jetskier were those actual blood filled raised blisters? I ask because I ran across something recently (and darned if I can recall what it's called) that presents as red spots under the skin as if teeny blood vessels had ruptured & left little red dots all over the place. It actually is associated with dh. I don't think I made a bookmark for it as I was...
  23. squirmingitch
    Murfee you are just starting out, it's going to take time to heal. I had pain I can't even describe all over my body before I was dx'd. The longer I was gluten free, the more pain went away. I was 54 & had lower back pain since my teens. I lived with it. I don't live with it anymore. It's so bizarre to me that my back doesn't hurt anymore after a lifetime...
  24. squirmingitch
    You forgot to attach the picture. You really have to get serious & extremely careful not to get cross contaminated. DH is sensitive to the tiniest amount of gluten and I wouldn't touch an Omission beer for all the tea in China. That's just crazy when you have dh.
  25. squirmingitch
    Cheeses rarely have gluten in them unless it's added flavoring as ravenwoodglass pointed out. I use Kraft & Sargento. Read the labels. I have yet to see a cheese with gluten ingredients but I don't go for "designer" cheeses anyway.
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