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cyclinglady

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

Everything posted by cyclinglady

  1. cyclinglady
    I can't help you with finding a new GI, but I can empathize with driving the 400! I have family in the Northern Atlanta area and visit often. How horrible that your account was so mis-managed!
  2. cyclinglady
    Welcome! Unfortunately, you would have to go back on gluten to get tested (8 to 12 weeks for the blood test and 2 to 4 weeks for the endoscopy). Here are the tests: Open Original Shared Link I am sorry that your doctor is so mis-informed! There are over 300 symptoms attributed to celiac disease and some celiacs are considered "silent" with no...
  3. cyclinglady
    If uncooked, he might have difficulty digesting them because eating ANYTHING with a Marsh Stage 4 gut is bound to hurt. If pickled, he might be reacting to any of the ingrediants even though they could be gluten free. Often, celiacs develop several food intolerances. Lactose intolerance is the most common. I'd recommend keeping a food diary and...
  4. cyclinglady
    Research indicates that the celiac disease blood test results do not necessarily correlate with intestinal damage. My blood tests were "barely positive" yet I had a Marsh Stage 3B (moderate to severe damage). But that's not important. Your boy's health is more important! I can see why he is suffering so much. The good news is that he should feel well...
  5. cyclinglady
    Sorry, but I would have to remind you and those who are newbies, that a whole foods, well-cooked diet is probably best. Avoid all processed foods. If you have severe intestinal damage, the villi tips are so damaged (or non-existent) that they can not release all the necessary enzymes, etc. to help a person digest and absorb food well or barely!!! Many...
  6. cyclinglady
    Welcome! The only way to find out if you have celiac disease is to get tested. Here are the tests that your GP can order for you: Open Original Shared Link Open Original Shared Link THIS IS IMPORTANT! YOU MUST BE CONSUMING GLUTEN DAILY FOR THE BLOOD TESTS TO BE ACCURATE. THIS ALSO INCLUDES THE ENDOSCOPY (BIOPSIES) WHICH ARE DONE BY...
  7. cyclinglady
    Who knows? It is possible. What does your doctor say? Did you get tested for celiac? IGg? Is that the TTg igg or DGP IGG ? Are you Iga deficient? We need ranges as lab ranges vary.
  8. cyclinglady
    Welcome to then forum, Mona! No swelling for me but I can encourage you to read our Newbie 101 section under "Coping". Learning how to be gluten free takes time. Withdrawal affects some of us, but not all. Remember this is an autoimmune disorder that is triggered by gluten (unlike MS or lupus where the trigger is unknown). But when triggered the...
  9. cyclinglady
    After my glutening in July, I had new weird symptoms, including hives and rashes. Have you researched Histamine Intolerance or Mast Cell Activation Syndrome? Most doctors are not aware of these.
  10. cyclinglady
    Because all the leading experts in celiac disease recommend it? I know that sometimes folks can not have one due to financial reasons or waiting a year for the endoscopy, but two weeks is a short time. Best to get a baseline on villi damage and to rule out other things (H. Pylori, SIBO, etc).
  11. cyclinglady
    I think you have celiac disease. It is probably NOT a false positive. You could ask your GP to order a full celiac blood panel for extra confirmation until you see your GI for the endoscopy. In my case, I have Hashi's (antibodies were off the charts) yet when testing for celiac disease my TTG was negative. I just had a positive DGP IGA yet...
  12. cyclinglady
    You are not crazy! She needs to learn to wash her hands before eating every single time and no fingers in her mouth! Do you have a 504 plan in place at school? Open Original Shared Link Other parents have had this issue, so you can search the kids section of the forum.
  13. cyclinglady
    Yes, both these tests can be ordered. The DGP test is typically better for dietary compliance. Insist on both! Tissue Transglutaminase (tTG) IgG -Deamidated Gliadin Peptide (DGP) IgG
  14. cyclinglady
    The DGP IGG and TTG IGG versions of the celiac tests.
  15. cyclinglady
    Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you. Your doctor is not following the standard level of care. I am dead serious. I have Kaiser. My own GP doesn't have a clue about celiac disease, but my Kaiser GI does. Please, I urge you to get properly diagnosed. All...
  16. cyclinglady
    Oh, you might learn how to tell if you had been glutened. I just had anemia as my main symptom. I did not have any tummy issues at all. I was in shock when my doctor even suggested testing me for celiac disease! Glutenings can vary as we are all different. For some it is just a few days, others a few weeks and others months (that would be me)....
  17. cyclinglady
    If you did actually have celiac disease, it can take weeks, months and years to recover from some of your symptoms, especially neurological ones. Best to get screened for celiac disease. It's a simple blood test. Any medical doctor can do it. But a GI doctor is needed for a diagnosis, since an endoscopy is part of the diagnostic procedure. BUT...
  18. cyclinglady
    Your doctor is woefully mis-informed. First of all you did get a positive on both (barely on the TTG IGA). That does not mean you should be referred to a dietician. You should be referred to a GI to run either the full celiac blood panel (your GP can not order it at Kaiser) and schedule you for an endoscopy to obtain four to six biopsies to confirm celiac...
  19. cyclinglady
    What? I assumed that they also took biopsies for celiac disease too! I urge you to find another GI or at least get your GP/PED to run the entire celiac panel or the missing portions (DGP iga, etc.) Gastroparesis? What's the cause of that? Type 1 Diabetes, CELIAC DISEASE......ugh! Get another doctor!
  20. cyclinglady
    The gluten free diet might be helpful (it can not hurt), but I would investigate the EE issue. I know you want concrete answers, but be very happy he does not have celiac disease. Here's more about EE. Open Original Shared Link Open Original Shared Link Other foods may be triggering his abdominal pain. You need to find the source. A...
  21. cyclinglady
    Welcome! Your daughter seems to be healing! No longer anemic, right? So, you are doing a good job, Mom! Has she had the DGP iga test for celiac? That one seems to better measure dietary compliance since the TTG can be affected by other autoimmune disorders or it just takes forever....to come down in many. I would definitely ask for that test. Glutenings...
  22. cyclinglady
    Hope all of you who reside in Kansas and Nebraska are safe tonight! That includes @kareng! Hail the size of baseballs is expected.
  23. cyclinglady
    I know you are anxious to see if oats was the culprit (I would be), but I think you'll have to wait a minimum of three to six months to get blood test results which should include the DPG and not just the TTG. That's based on what the American GI Association's celiac follow-up testing recommendations. Open Original Shared Link Of course, symptoms...
  24. cyclinglady
    It would be worth checking with your water company. Per Consumer Reports, your water company might offer free test kits. You could test the filter too using the test kit. Open Original Shared Link
  25. cyclinglady
    Maybe it is EE (Eosinophilic Esophagitis), but first make sure celiac disease is ruled out for now. Here's more information about EE and Mast Cell Activation Disorder (might be a cause for EE and something else to research). I am not suggesting MACD, but many doctors are not familiar with it. Search the forum for EE. We have plenty of parents here and...
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