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roomorganizing

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by roomorganizing

  1. roomorganizing
    Okay.....this may be out of line since I'm not a doctor, but is anyone else totally frustrated that the only tests run are the tTg's?!?! My understanding is that, these days, celiac is just as likely (or maybe more so) to show up with the DGP tests and that running only the tTg's (IgA and IgG) is for screening purposes and for rechecks after diagnosis, not...
  2. roomorganizing
    blackbetty and Shelbz, don't be fooled by your current symptoms, or lack of. Remember, we now know that most gluten symptoms are NOT digestive in nature. The classic celiac symptoms are diarrhea and/or constipation, bloating, cramping/pain, etc -- but the list of over 300 celiac symptoms suggests that the classic symptoms are no longer the major indicators...
  3. roomorganizing
    Bane, I am an infrequent poster, but I have followed this forum almost weekly (sometimes daily) for 5 years since finding out that our oldest son (now 21) has celiac. His was found with a high tTg that lead to a positive endoscopy. That single discovery began the celiac avalanche for my family. Because of the reading I did here, I knew that everyone in our...
  4. roomorganizing
    Sorry this reply is a little late, but you don't really need a referral from your PCP. He/she can order a complete celiac panel to be run...it doesn't have to come from a specialist. Be sure to write down or have on your phone the list of tests that cyclinglady posted above and MAKE SURE the doc shows you that those tests are requested. If it lists "Celiac...
  5. roomorganizing
    Kathryne, your dilemma made me think of this thread: https://www.celiac.com/gluten-free/blog/1038/entry-1886-celiac-disease-now/ I've read on this forum and through other research that villous atrophy can be caused by other culprits, but with the symptoms you experience I would want to totally rule out the most obvious thing (gluten) first before...
  6. roomorganizing
    KayJ, so sorry this response is late. My hope is that you revisit your posts to check on new replies. Our oldest son was 16 when we got his diagnosis. As a child, he always measured in the 75-90% range for height and about the same for weight. As he got older, he began to measure out in the 50-75% range for height and 85-100% for weight. We didn't think...
  7. roomorganizing
    I have been mostly gluten-free for about three years after finding out that our son, who was 16 at the time, has celiac. As the years went on I became increasingly convinced that I also have celiac disease (lots of symptoms and also finding out that my father had it). I made an appointment with a gastroenterologist and he has ordered bloodwork, but suggested...
  8. roomorganizing
    I'm sure you will get responses from some who are much more versed in this disease than I, but I would hedge a bet that they will recommend you request a full celiac panel be run. I have learned SO MUCH from this forum (and other sites), and one of the things I've read over and over again is that celiac disease and Hashimoto's are very connected. Your symptoms...
  9. roomorganizing
    I've had spots that appear mostly on my hands, wrists, and arms for about 6-7 years now. I've also had them show up on my legs, tops of feet, my lip, elbows and occasionally my back. I always thought it was eczema or psoriasis, but am now wondering. The spots usually present as small, round dry spots that will grow in size but are typically barely raised...
  10. roomorganizing
    Hi, Dgirl! Everyone on this forum knows you are not making things up, but many have been made to feel that way from their docs....and sometimes family. And after so many years, we can begin to wonder if it's all just in our heads, right? Even though we really know it's not.... I can't help you with the GI report language, but I can tell you this part of...
  11. roomorganizing
    We got results of my 12-yr-old daughter's blood work today. Everything was in the normal ranges except for the DGP, which was 37 units (<20 antibody not detected)(>or=20 antibody detected). Her CBC showed no abnormalities or deficiencies, so the doctor said he recommends eating gluten-free, but he will not diagnose her with celiac. He believes that...
  12. roomorganizing
    squirmmy, I've never heard this.....can you tell me a bit more? I've posted a couple of times in the last few days about my daughter having a "dry spot" on the back of her knee a couple weeks ago. She put a bandaid over it to keep from scratching and for her jeans not to rub. Two days later, the whole back of her knee was red and raw and itchy, so I told...
  13. roomorganizing
    Thank you, Mushroom! Yes, I do know about the testing site and mentioned it to the PA. He reacted as if he was already aware. If her skin continues to clear and she has no further spots crop up, I may cancel the appointment and wait for another outbreak. No need to make her go through the procedure twice....and I wonder if they would even do another biopsy...
  14. roomorganizing
    Hi, Gang! About two weeks ago, our daughter showed me a spot on the back of her knee that she said itched really bad. I told her it looked like one of the spots I get on my hands, forearms, and occasionally on my legs and tops of feet. She put a bandaid over it so that she couldn't scratch it and it wouldn't rub on her jeans during school. A few days...
  15. roomorganizing
    I totally understand how you could relate every symptom to gluten! After reading hundreds of posts and stories on this forum as well as dozens and dozens of medical articles, I have come to understand that celiac disease can be the ROOT of so many other conditions and symptoms. And it can be so frustrating when most doctors want to treat superficially and...
  16. roomorganizing
    Anyone have any luck in Athens? The offices I've spoken with don't seem to be very knowledgeable. Even the dermatologist I've gone to does not do testing for DH, and a GI office has no one that they recommend. What?? We are new to the area and I'm finding it truly frustrating to talk to people who seem to be clueless about this disease! I understand that...
  17. roomorganizing
    In my case, geographic tongue means I have cracks all over the surface of my tongue -- kind of looks like a road map, yes. Others will have round spots. I have areas on my tongue that will hurt for a short period (about 15-20 minutes) after I eat certain things, like pineapple, too many tomatoes, sometimes even bananas! Kiwi makes my mouth "itch" but I love...
  18. roomorganizing
    Thank you, saaa-wheat! I had never thought about my family connections to celiac that way, but I can't get the visual of your words out of my head. You're right that I am absolutely surrounded! I have decided to skip the endoscopy because I truly feel there is plenty of "evidence" without it. In my mind (you know, the one with brain fog...) the endoscopy...
  19. roomorganizing
    Oh, talk about brain fog and forgetfulness! I've had bloodwork done in the last 6 months. Everything was normal, though my iron level was at the very low end of normal and I take iron several times a week. I also had genetic testing done almost two years ago and have both the DQ8 and DQ2 markers. I KNEW I left something off the list!
  20. roomorganizing
    Hello All! I am relatively new to the forum. I joined a couple years ago after our son was diagnosed with celiac disease and couldn't pull myself away from the computer for two days! I was a sponge on this forum and am so thankful to this day for all the information everyone offers. I'd like to share a bit of my background with celiac.... On his 16th birthday...
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