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ironictruth

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Everything posted by ironictruth

  1. ironictruth
    So, I have gotten the heart arm/thing. it's still unsettling when it happens but I'm much better at dealing with it now. My brother who's a confirmEd Celiac also had it. he doesn't go to doctors very often but when he got sick he ended up going to two cardiologist because he really truly thought there was something wrong with his heart. it turns out...
  2. ironictruth
    I am so sorry for what you are going through. I was falsely diagnosed with Hashi's and my antibodies were normal! I wish I could help by saying my story is like yours, which it is, but not in the ways you are looking. It is true, TTG can be elevated in other disorders including problems with the liver. you seem to sort of fit into the Latent...
  3. ironictruth
    The blood test could very likely still be positive. but you need to have it done very soon. Call and ask for it. TTG, DGP, EMA, overall IGA. My doc told me to go gluten free and forgot to run the blood work for a month. If you call and ask for it Get it drawn as soon as possible and then you should be able to talk about it at your appointment. Good...
  4. ironictruth
    Hello, The test you test positive for can be positive in folks with celiac (as cycling lady) and it can also often produce false positives ( very new research this year suggesting it's not as accurate as we once thought). That being said, some docs might dismiss the elevated DGP IGA if TTG is not positive. To me that kind of begs the question...
  5. ironictruth
    The way I have had it explained, coupled with reading, is that once the intestinal cells (IELs) start infiltrating in response to gluten, they prompt a release of cytokines and interleukin response which can cause an inflammatory response anywhere in the body. Celiac, potential celiac, ncgs, bacterial infection, HIV, graft vs host disease, whatever...
  6. ironictruth
    I Know! we are very lucky to have them.
  7. ironictruth
    They do label some of their plain non seasoned organic meat though which is what kind of confused me.
  8. ironictruth
    Woo hoo! You are awesome. Thanks!
  9. ironictruth
    Does anyone know why some Wegmans meat says gluten-free and other meat does not? I hate to be overthinking this but it seems that the organic steak will have the gluten-free Logo on it but the regular steak will not. Yet in my boyfriend's fridge right now there is a non-organic peppercorn pork loin that says gluten free and a non organic package...
  10. ironictruth
    Hello. I have not been diagnosed celiac but ncgs by a celiac specialist. I have a Marsh 1 on biopsy. I have pain in my right neck on and off. It led to a thyroid uLtrasound which showed my isthmus is larger on that side And I have a very small nodule. But an endocrinologist ruled out any issues with the thyroid. It is not consistent like a muscle....
  11. ironictruth
    Yes, it is absolutely possible.
  12. ironictruth
    I am completely 100% clueless when it comes to the genetic stuff. I get the basicS. DQ8 And DQ2 I was emptying out a drawer tonight and came across my Prometheus results which listed my gene as being DQ2 heterozygous. It was listed as a category 4 high risk. Below category 4 DQ2 is listed again as a lower risk gene. I don't understand the difference...
  13. ironictruth
    So, there have been some recent articles, like in the last several months, looking at folks with a positive on the test and absolutely no damage on endo. Previously it was believed to be a very specific test however it looks like they're shedding light on the fact that this may not be the case, at least not to the extent previously thought. That being...
  14. ironictruth
    I understand them not wanting to put him through unnecessary procedures but the alternative is to let him suffer for a longer period of time then? Tell the docs that if nothing else has been found in two months other then the positive celiac panel then common sense dictates when you hear hooves think horses! If they don't find the horse THEN they can...
  15. ironictruth
    Great share!
  16. ironictruth
    So my brother is an organic dairy and beef farmer with celiac. His cows are mainly grass fed but do get grain in the winter..in the barn...where the dust flies and the wheat in the grain gets inhaled and on the lips. It took him awhile to figure out what was getting him sick again after he started healing. I am not sure what they did to rectify it, but he...
  17. ironictruth
    I 100% agree with cycling lady. I have done a lot of research on DGP as well but will spare you. Both docs are correct in that it could or could NOT be celiac. However, with her symptoms, she would benefit from an endoscopy anyway so why not do one? Additionally, she does have a higher chance of having the disease with a sibling having it. Ugh. I cannot...
  18. ironictruth
    No deamidated gliadin test?
  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
    It happened to me multiple times. One time a product actually contained wheat. I wrote them twice then finally canceled. A bummer because it was a fun idea.
  24. ironictruth
    Very interesting. However, my positive on the DGP test is on the combined assay. When separated into IGA and IGG they are within normal range. Twice the IGA was a point or two above normal range, which can be easily disregarded per University of Chicago. Much of the research done on NCGS is showing activation of cells which are different then in celiac...
  25. ironictruth
    Lol. The super heros of the celiac boards! SIBO was ruled out.
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