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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
    Mass General in Boston has a pediatric celiac institute.
  2. ironictruth
    Might be time for a new GI doc. To officially rule it out. I am seeing a celiac specialist to rule it out and he informed me that people do not always get symptoms on a gluten challenge.
  3. ironictruth
    You were negative for celiac you said. How many months ago, 5? Did they do a biopsy? If so, was there any inflammation or damage? What symptoms led you to test for celiac?
  4. ironictruth
    While there is nothing seriously alarming it may be worth asking the Doctor That did the liver panel to check it again now that it's been three months to make sure the AST goes down. liver enzymes can be elevated in Celiac disease but with your family history and the broken blood vessels It may be worth Re-checking. I know you were in pain but try...
  5. ironictruth
    What were the weAk tests? What did the biopsy actually say?
  6. ironictruth
    Did you have AST, ALT Alkaline Phosphatase and bilirubin checked recently, since the burning and blood vessels started?
  7. ironictruth
    Those are high. Wow. Do you live in NH?
  8. ironictruth
    Out of curiosity for myself, why are you prone to tendon injuries?
  9. ironictruth
    Yes. It can takes weeks to months or longer to feel better. As well as reactions can be delayed. my brother with celiac thought he was having a heart attack. I remember during one of my gluten challenges lying in bed with pain in my chest and behind my back, I can only describe it as what felt like contractions it kept coming and going in these waves...
  10. ironictruth
    Here is one example of what I mentioned above. Open Original Shared Link
  11. ironictruth
    There are a lot of docs who would put you in the potential celiac range which means, as mentioned above, things could get a lot worse if you continue eating gluten. Marsh 1 and 2 scoring can absolutely go on to become Marsh 3/4, the official "celiac" diagnosis. BUT, there are limited studies on this because ultimately, what researcher is going to NOT...
  12. ironictruth
    Trust me, I have spoken to three US celiac research centers and one additional foreign expert and DGP is not that specific. Was it the IGA or IGG? Or does it not specify? Here is one example: Open Original Shared Link That being said, it is still positive and can catch some folks with gluten problems (especially IGA deficient) so your bloodwork...
  13. ironictruth
    You could possibly try calling the places in Texas and Chicago to see if they can refer you somewhere that does accept your insurance. Oh good luck to you!
  14. ironictruth
    Run to the nearest celiac disease specialty center if you can. Especially with conflicting doc opinions. Where do you live? Honestly, I test positive to only the DGP and the newest research on its specificity is a mixed bag. My recent scope did not show "active" celiac disease but only a slight increase in IELs. I am waiting for my post biopsy appointment...
  15. ironictruth
    Thank you! An interesting read.
  16. ironictruth
    I said I would keep some folks updated who were curious about my positive DGP combined IGA/IGG assay which has mostly been negative when separated in to IGA and IGG tests (except 2 extremely weak IGA's). I did 14 weeks of eating gluten and they retested the TTG and DGP (combined). TTG was again negative and DGP was pretty much exactly where it was 8...
  17. ironictruth
    How are your bathroom habits? Giving up gluten can equate to a fiber loss. And celiac can slow transit time. You may literally be full. I was going everyday but had 2 scans months apart. Both times docs informed me the colon was full. I was shocked. You do not want too eat too much fiber either though because it can also cause issues with constipation...
  18. ironictruth
    Yeah, this is pretty much what happened to me. My first scope on gluten for 6 weeks was totally fine. My 2nd scope off of gluten several months later showed duodenitis ( no villi blunting) and the same test you test positive for which above, I explained the current research on. Again, except for two very weak positives on the separated DGP IGA tests, I tested...
  19. ironictruth
    Huh? Yes, you need to be on gluten for the scope. Not even sure why they would say that to you. What blood tests were positive?
  20. ironictruth
    That sounds like a good plan then. You do not want to feel any worse during your internship. Enjoy your time and feel better soon!
  21. ironictruth
    You might want to stay on gluten for the scope. 3 months off is awhile. I doubt you would fully heal or anything during that time. But you may start to heal. Especially if you already feel like you're in limbo. Some folks are fine with positive blood work and committing to the diet but if you feel like you're in limbo you probably want the scope. And it...
  22. ironictruth
    Thank you!
  23. ironictruth
    For those with nausea, how quickly after exposure? 10 minutes? 4 hours? 1 day? And how long does it last? Minutes? Hours? All day? I have been getting nausea on and off since the summer. Was gluten free then but a lunch of raw veggies could Put me into queasy stage. All I had back then was duodenitis, and if I had to guess gastritis, I...
  24. ironictruth
    Do you know how many samples were taken to biopsy during the endoscopy?
  25. ironictruth
    I do not have a diagnosis. But I do know that I had an EUS in late July to rule out duct issues and an endoscopy in late August and both doctors said visually everything was fine. In fact, one of them (was referred to him for the procedure only) sternly said, "there is nothing wrong with your duodenum!" But never asked me a single question about symptoms...
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