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ironictruth

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

Everything posted by ironictruth

  1. ironictruth
    Yeah, so after being so unsure in the last couple of years about the diagnosis, and being told it is not celiac, I'm still a little unclear. it is always tricky for them when the TTG is not positive And the EMA is negative. other things can cause your Villo Blunting. But, in my case I have a sibling with Celiac and also genetic predisposition so it is...
  2. ironictruth
    Yeah, sometimes when I'm running I actually think of you cycling while you Were Anemic and I'm like, "I have got to be able to finish this". I should probably get my Ferritin checked again actually. it had dropped from the 70s to 20 and it's been a few months since I had it checked. I am on iron daily now so that it doesn't drop anymore. the...
  3. ironictruth
    There were some folks who asked me for an updatE As they had similar Results. I'm going to give the most recent update and history first and then the surprising Semi conclusi I had my endoscopy in April with the celiac center. it showed merely an increase in IEL, no villi blunting. DGP combined assay was positive on more than one occasion but...
  4. ironictruth
    Very frustrating, I know. Yes, other things can elevate TTG and DGP. It just seems strange that both were positive though. Have you had them repeated? When you say the biopsy was negative, do you have a copy? They typically only diagnose celiac in the later stages of damage. Sometimes there may be an increase in lymphocytes prior to blunting....
  5. ironictruth
    Eosinophils or lymphocytes? Maybe both? An increase lymphocyte cells could be suspicious for potential or early celiac if the biopsy did not catch any villi damage. But those cells can increase with other things too, such as bacterial overgrowth. Best to correlate with labs. Not sure why DGP is not on the reflex? Can you get a copy of the report...
  6. ironictruth
    The celiac center at Columbia just published a study in February on TTG negative DGP positive biopsies. They utilized both screens. It is maddening. I thought I had the answer then....nope! I think they even make a TTG/DGP screen but do not quote me on it. Yes, I am gluten free now as of late May per my specialist. I have undergone so much testing and...
  7. ironictruth
    I know, confusing. INOVA has a few different types of assays which include DGP. One is your typical DGP IGA and IGG test and another is a combined assay which is the DGP screen (combines IGA and IGG in one test). On three occasions I tested positive to the combined assay but negative on the separated IGA and IGG assays. someone on the boards here pointed...
  8. ironictruth
    That is awesome that you have access to the lab. AGA testing comes back positive in about half of folks with ncgs too so I think it is beneficial to have labs continue to offer it. Testing is crazy. I am positive on one type of DGP test (combined assay) but negative on the separated assay (1 point weak positive on the IGA twice). This can happen to...
  9. ironictruth
    That amazes me that they are still in use at your lab. Is your lab associated with a research hospital? We could not find a lab anywhere within 2 hours of me that ran the AGA tests UNLESS they were part of a reflex cascade. If TTG and DGP were negative, it would automatically test for AGA, but ONLY if the prior were negative and they absolutely would NOT...
  10. ironictruth
    Yes! I will spare you the long boring backround details but it turns out those drugs they use to knock you out can wreak havoc on your gut. A nurse helped me put 2 and 2 together after a procedure. I had a few over several months and kept getting worse. It became frustrating because it became a "symptom" that we could not figure out so it was steering us...
  11. ironictruth
    Hemochromatosis, iron overload, can affect celiacs. So, be sure your doc knows this and checks you often. Good news....usually treatable by a routine visit to the American Red Cross via blood donation. lucky for you your ferritin is low so highly unlikely. Lay off the iron supplements but keep your diet high in iron.
  12. ironictruth
    DGP was not really used in traditional labs in 2004. On the flip side, gliadin is no longer really used in traditional Labs now. I would be shocked if you went to a lab that was still using it. If you get your test results from the lab, like an actual print out that maybe they send to the doctor, he could scan a copy to you, it may say the test was run...
  13. ironictruth
    I think you hit the jackpot. In 2004 DGP was hardly used in non research settings. Now you would be hard-pressed to find a non research lab that would run the old Gliadin tests. I was actually told this by a researcher. The old gliadin tests can be positive in A number of autoimmune conditions, and healthy controls as well. It also shows up positive...
  14. ironictruth
    http://www.cureceliacdisease.org/tag/liver/
  15. ironictruth
    Had you cut back or cut out gluten prior to the test? Any test can produce a false positive on that test, but if you cut back on gluten then you are not making those antibodies to it either which could result in a false negative.
  16. ironictruth
    Whatever you do, run to the store now and eat donuts and bagels. Because I think when your endoscopy is done and over with you're not going to see them again. There are a lot of really good gluten-free cookies, cupcakes, brownies, etc. Donuts and bagels... not so much. Hope you feel better soon after you get some answers!
  17. ironictruth
    You mentioned the fatty liver, so my mind went there right away. Try your local celiac group for docs. Or, https://celiac.org/blog/2017/06/dr-sheila-crowe-becomes-president-american-gastroenterological-association/
  18. ironictruth
    DGP IGA can produce a false positive in liver disease. I was told this by not only a specialist but also if you Google liver and DGP IGA you will find a link to a publishEd study where some of the folks who were positive for that particular test were negative for the Celiac Gene. that being said, some people only test positive to that test who do have...
  19. ironictruth
    I have bought Canyon at Costco.
  20. ironictruth
    So, my ferritin has dropped from 70's to 20 (cut off is 13). Serum iron was normal but I had eaten like 5 times that day before noon so it was not fasting. The last time I fasted for a procedure my RBC and hemoglobin dropped to mild anemia. I drank like 2 nutrition drinks per day and took black strap molasses for a couple of weeks and then it was fine. ...
  21. ironictruth
    Try to make sure the GI doc runs the entire panel. Dgp and ema too. There are members here who only test positive to dgp and have positive biopsies on endoscopy. Dgp is a test which is roughly 10 years old. In many labs it will read either deamidated gliadin or gliadin lite II. The II indicates that it is the new version. The test is often confused with the...
  22. ironictruth
    Just a FYI, you posted in a post that is over 10 years old. So sorry about your suffering. Ugh. How awful. I get right sided pain as well and did all of the scans too. It is scary when you do not know what is wrong. Try to see a doctor to run the complete celiac panel: ttg, dgp, ema and overall iga. Look them up and insist they all get done. Some...
  23. ironictruth
    I hear ya NHmom. But I also hear cyclinglady, and the many others on this board. Take it from me, it is horrible to have some questionable bloodwork and/or a questionable biopsy. I cannot imagine going through what you are with your little one. I cannot even handle it for me and I am an adult! It is worth the wait to get an educated opinion vs...
  24. ironictruth
    Alessio Fasano at Mass General. or Maureen Leonard. Mass General has a Celiac disease program at the Children's Hospital there in Boston. You literally could not be any closer to the best. Good luck. http://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1723 I went there as an adult and they do provide virtual visits once you...
  25. ironictruth
    You need to get a full celiac panel including ttg, dgp, ema and overall iga. all of those should be ordered I would be suspicious of a doctor who did not order the entire panel. a lot of people on here including myself started off with a GI doctor who was not too Savvy with celiac disease and ended up having to get second opinions. you may want...
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