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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
    Where I live there is an AMAZING gluten-free bakery with awesome cupcakes including, peanut butter cup, s'mores, and others. When I was eating gluten-free my co-workers requested I bring them in for birthdays even though they could have had regular cupcakes. The bakery also makes a lot of other stuff. Do you have anything like that in your town? Or somewhere...
  2. ironictruth
    I agree here. Something is going on so why would they NOT do a scope? When I met my first GI, he suggested I have the genetic test. 30-40% of the population has the gene, but if you do not, it pretty much excludes celiac. I remember saying "great" I would not need the endoscopy then, and he told me I still would, to examine why I was having issues. Some...
  3. ironictruth
    Yes. Agreed. Reckless use of language on my part. The sodium/salt recommendation is not a cure, but may help combat mild symptoms, just as a heating pad may help some exposed to gluten who have mild cramping as a result but certainly will not cure celiac. Best of luck. I will excuse myself now.
  4. ironictruth
    My apologies. You misunderstood. I said for "mild" cases. I only posted that because POTS has been found to be common in celiac. I thought it would be a helpful comment for those reading the thread who had not tried increasing salt/water and had a more mild form. It was not meant to be directed to your case. I am not that naive. I know many times folks...
  5. ironictruth
    For mild cases of this keep your water and salt intake up. Not a drastic amount, but if your heart seems to be working overtime had a tbsp of gluten free soy sauce and a glass of water.
  6. ironictruth
    I will flat out say I have no experience with this. But I do have experience with blood showing results after my body already knows something, like a delay. I had some funky heart issues last year and was in the ER, my magnesium and potassium were fine. My doc even commented on it when he saw me 6 days later and re-ran the tests... and they came back low...
  7. ironictruth
    Yes, in fact, the Celiac Center in Chicago informed me that DGP IGG would more likely point to celiac then DGP IGA. Though I am unclear why. Both tests can catch celiac. HOWEVER, both tests can result in a positive biopsy and both tests can ALSO produce a positive in folks who do not have celiac. Best to stay on gluten in order to rule in/out the...
  8. ironictruth
    Hello, Cyclinglady is right, it just takes one positive. That being said, some of the antibody tests can show up positive in diseases other then celiac. Including the newer deamidated gliadin. You probably had the older tests run in 2008, which are even less reliable but can be positive in up to 50% of non cekiac gluten sensitive folks (See research...
  9. ironictruth
    Thank you for trying Emma!
  10. ironictruth
    Umm...so that is a brilliant suggestion. I will call and ask. If not, I think we have a student intern starting in the next couple of weeks, they always have access to databases at university libraries.
  11. ironictruth
    just came out in a medical journal this month and I Would love to be able to read more than the first page. Does anyone have online access to any databases where you might be able to grab this? Open Original Shared Link
  12. ironictruth
    Ditto on the above. Stay on the donuts until the biopsy is completed.
  13. ironictruth
    Get a second opinion if you need to. They actually have to keep the biopsy slides. So if you can find a celiac center that would be willing to look, you can have them sent. First, you might want to do the bloodwork for antibodies (TTG, DGP, EMA and overall IGA). Possibly, if the genetic testing is covered by insurance, do that as well.
  14. ironictruth
    Yeah, there are some associated liver related diseases which can attack bile ducts. Do not freak though! I am no doctor. Just a thought. And, make sure all STDs are ruled out. Totally random, but you never know.
  15. ironictruth
    Hmmmm.... Maybe follow up on the possibility of interstitial cystitis (inflammatory process in the bladder). Do you urinate a lot? Fatty liver can certainly cause some pain in that area if it is being pushed or touching other organs. Air bubble in bile duct? How did they "see" this? Do you have the original imaging to bring along to a specialist...
  16. ironictruth
    1) Have they re-run a urine screen to see if the blood is gone? This can be caused by multiple issues, including menstruation (obvious), infections, endometriosis, interstitial cystitis, etc. 2) Gallbladder-how old are you now? Have they looked at your bile ducts with an abdominal MRI? 3) Gene/antibody. Are you SURE the genes were tested? Often...
  17. ironictruth
    You absolutely CAN see an elevated TTG absent celiac disease as well as false positive DGP. So it is not wise to jump to conclusions based on a positive. But he certainly should be worked up for celiac. The tests you reference initially are antibody tests. Not gene tests. Did the HLA gene tests come back yet? It would also be good to have...
  18. ironictruth
    Did they actually find anything wrong with a kidney or is that where you are describing some of the pain area is? How does your gallbladder look? is it referenced in any test that you have the results of? Have your pancreatic enzymes been checked during any of these episodes? Can you get a hold of which blood test you had that pointed towards...
  19. ironictruth
    Yes, ask GI and OB about the possibility and see if they can offer any suggestions. Good luck!
  20. ironictruth
    I was thinking levator ani syndrome with pain in the coccygeal region. But even if this is the case, the treatment would pretty much be what you're already doing.
  21. ironictruth
    Is this actually on your tailbone or radiating to it? I.e., do you feel it any lower? I ask because you make a point of referencing it is unchanged by bathroom habits so the location must have made you wonder. Is it always 2 hours or do you have shorter bouts (20 mins?)
  22. ironictruth
    I ask because deamidated gliadin can show up positive in liver disease (including cirrhosis) even absent celiac. As can a b12 deficiency. So if your biopsy is negative, that may be a differential. Good luck with the testing. Let us know how it turns out.
  23. ironictruth
    I am sorry for what you are going through. What IGG test was originally high? How advanced is the liver disease?
  24. ironictruth
    Ithaca, NY, home of Cornell and some nice waterfalls is a very progressive little city. Burlington, VT. I have a celiac brother who owns a farm 45 mins from Burlington with a house for rent on air bnb. He probably knows safe bets in VT as well. Wegmans and Trader Joe's are scattered through out NY. Especially Wegmans in the finger lakes area. Lots of...
  25. ironictruth
    Deamidated Gliadin (assuming this was what your test was...does it happen to say Gliadin Lite II anywhere?) can show up positive for diseases other than celiac. It is a newer test, roughly 10 years old (used under that amount of time in the states) and the research is ongoing. It replaces the OLDER gliadin tests which MOST labs no longer use, but SOME still...
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