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squirmingitch

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Everything posted by squirmingitch

  1. squirmingitch
    The following excerpted from: Open Original Shared Link Emphasis mine. DIF has a sensitivity and a specificity close to 100% for the diagnosis of DH. Moreover, according to the ESPGHAN guidelines for celiac disease, a positive DIF in a patient with suspected DH allows for the diagnosis of celiac disease without the need of duodenal biopsy.8 DIF should...
  2. squirmingitch
    Thank you both for your concern. I'm glad you're through the worst of it too Shelly. I guess by now you're all done with it. Yay! I haven't had time yet to look for the link. Just popping in before I fall down for a much needed nap. Got groceries this morning & that was enough. Yesterday we put everything back to rights despite our vow to just let...
  3. squirmingitch
    You're welcome! Shelly we weathered Hermine just fine. Lost power for 3 hours during the night. No damage here. It tracked slightly north of the center of the forecast cone which made it a tad better for us but really, we didn't get nearly what "they" touted. You're up next for Hermine. Just stay safe indoors. We are worn out though from preparations...
  4. squirmingitch
    Heyyyy, I'm on for a bit unless we lose power. This is just a quickie with only some of the info. I wanted to give you. Negative bloods never negate a positive! You don't have to be positive on all the bloods or even more than one. But unless you're willing to eat gluten for 2 weeks for the endoscopy then there's no use doing one. Those with dh...
  5. squirmingitch
    shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations...
  6. squirmingitch
    Welcome to the club you never wanted to join! The good thing about this club is that you don't have to take any pills, get radiation or chemo, or stick yourself with a needle every day. Things could be much worse than this. Does your brother live close? If so he could go to your same savvy doc. That would be great! Also what about your mom?
  7. squirmingitch
    Oh you're most welcome! Another thing --- no steroids, oral or injected for 2 months prior to a dh biopsy. Lay off any topical steroid creams for 2 weeks prior. Really, stand your ground with them. It would also be great if you can get a friend or family member to go with you in case they take the biopsy from somewhere that you can't see such as...
  8. squirmingitch
    Do you have copies of your blood test results? Can you post them? Don't forget to list the reference ranges. Is the TTG the only celiac test they did? Do you have a copy of your pathology report? Get it if you don't. How many biopsies did they take & from what areas? Were you eating gluten right up until the biopsy?
  9. squirmingitch
    I got them on the back side of my knees too. All the literature points out knees & elbows but doesn't mention the "behind the knee" portion of your leg. I eventually got them ON the knees itself but that was one of the last places to present. I also got them on the inside bend of my arm instead of the elbow and just like the knees, it eventually presented...
  10. squirmingitch
    DH can look like that but other things can as well. It would help if you described the way it acts/presents. You can get a dh biopsy. Read threads in this section to find out how the biopsy is done correctly.
  11. squirmingitch
    Anxiety is quite a common symptom with undiagnosed celiacs. It should improve if not disappear when you go gluten free. Be sure to CONTINUE eating gluten until the endoscopy! Welcome to the club!
  12. squirmingitch
    This just published: Highlights • Kernel-based gluten contamination in oats skews gluten analysis results. • Grinding inadequately disperses gluten to allow a single accurate analysis. • Lognormal distribution of the test results renders a single test unrepresentative. ...
  13. squirmingitch
    This is the 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 can be termed this way: Endomysial Antibody IgA Tissue Transglutaminase IgA GLIADIN IgG GLIADIN IgA...
  14. squirmingitch
    My dog was gluten free long before I ever knew there was such a thing as celiac disease; actually since the day she entered our house @ 9 weeks of age. People might argue the point with me but there are a lot of others out there who will agree wholeheartedly (including many dog breeders) that dogs are essentially allergic to wheat, corn & soy - especially...
  15. squirmingitch
    NightSky, I am wondering if you might have a wheat allergy. I'm not saying you don't have a problem with gluten - please understand that. What I'm saying is that it's possible to have celiac AND a wheat allergy concurrently. I am so sorry you're feeling so rotten awful! I agree that a GOOD doc is in order here and I know you've said you're going...
  16. squirmingitch
    Hi, Honestly, it's better if you get the biopsy so you can always pull it out & stick it in some docs face when they don't believe you have celiac. You will also find more support from friends and family (& help to get your brother to get tested). That is if you are not afraid of the biopsy process. In life, we never truly know when we might...
  17. squirmingitch
    You might want to check out the Gluten Free Watchdog - just google it - and join. Very smart lady there who also has celiac disease. She's gone to the mats for us many times. She knows her stuff! 8 products are tested per month and there are many great articles and videos as well. She's the same lady who does the Gluten Free Dietician but on the Watchdog...
  18. squirmingitch
    It makes no difference. If she won't wash her hands with soap & water before she eats then whatever she touches & then eats is like she's eating whatever she touched. Purell will NOT get rid of gluten! Purell is a sanitizer NOT a wash. You can't kill gluten, you can only wash it off. I It will not matter if the Purell is wet or dry, she will...
  19. squirmingitch
    I also agree with Gemini & all she said. I only have one caveat. Do you have kids? If you don't get an endoscopy these a&&$@!e docs are not going to give you an official dx. IF you have kids, especially young ones still living at home, then you need to get a dx for their sakes. All first degree relatives should be tested every 2 years. Celiac...
  20. squirmingitch
    You could request an EMA blood test. The EMA is specific to celiac disease & a slam dunk especially when combined with your over the top positives that you've already had. See: In addition you can request a gene test to see if you have the genetics that predispose one to celiac disease. The genetic test is not really used to dx celiac but rather...
  21. squirmingitch
    If I had a dollar for every time I've read a celiac say they have (or did have) belly looks 7 mo pregnant, get sick after they eat, headaches, stomach pain, nausea, vomiting, joint pain, emotional changes, severe fatigue and weakness, then I would be rich! There are many more common symptoms that many had (or have). Personally, I could add to that list...
  22. squirmingitch
    What country are you in? I can't make heads or tails of this test the way it was written. I don't understand it at all.
  23. squirmingitch
    Hang in there mom! It will soon be over. Just stay strong. The anemia fits right in.
  24. squirmingitch
    SickInChicago, Let's make sure you're not getting any cross contamination. Read this thread & follow the links contained within it. And this one too: I am so sorry to hear that your first doc who did the tests when you were 10 was a complete dumbass as to tell you it was a false positive. There are actually very, very few false...
  25. squirmingitch
    Doctors are not going to check out whether your prescription contains gluten. They are doctors not pharmacists. They can't possibly know which manufacturer your pharmacy carries of any given medication therefore they can't possibly know if what you're going to get is gluten free. You need to ask the pharmacist where you are filling the script to check &...
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