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ironictruth

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Everything posted by ironictruth

  1. ironictruth
    So I just found out some confusing news about my most recent positive blood work. Turns out it may not be positive. Inova has a Deamidated glidian test that is combined and they have one that separates the IGA and IGG. The one that separates the test is often used by my local Labs without the word deamidated in it but looking it up online it is the DGP test...
  2. ironictruth
    My brother actually told me about that story recently! It's funny because when I first started getting the pain before it became crime I had Googled something about Celiac artery as well. And I think the Celiac artery is what they block when you have pancreatitis as well. I have not tried to do the fetal position but I will certainly give it a try. at this...
  3. ironictruth
    Yes, I was thinking pancreatitis too as I had several bouts of terrible burning mid gut into the back which had me pacing at 2am. So far, the blood work you mentioned has been normal. TRI's in Feb were 60. and they even did an EUS. I actually felt the doctor jab something during the procedure. I raised my arm when he did it and the pain was bad and worsened...
  4. ironictruth
    They did an endoscopy recently. Is there another test?
  5. ironictruth
    It is bad because it is chronic through ouht the day. But I can function. Makes me queasy too. I had an infected bile duct in 1997 and those attacks were very bad. I now have pain right where the pancreas is but ultrasound was normal and enzymes are normal. I also feel a lot of pressure/pain on my right side by the ribs and pain in my back. My blood sugar...
  6. ironictruth
    Excellent!
  7. ironictruth
    I will stand in line for a celiac savvy GI in Upstate NY!
  8. ironictruth
    I live in Central NY and am giving up on GI's here being knowledgeable about celiac. I am driving to Mass General in Boston next month. They have a Celiac Center there. It might be worth your drive. 5 hours for me. I like my current (also 2nd GI) much better then my first as he actually listens and is willing to order obscure tests but also explore simple...
  9. ironictruth
    Thanks. I will try it.
  10. ironictruth
    Ravenwood, oddly I did notice sometimes food helps. How long did your nausea last?
  11. ironictruth
    Oh great, and they have been giving me this drug!
  12. ironictruth

    ARCHIVED nausea

    ironictruth posted a topic in Coping with Celiac Disease

    For those of you who get this, how long did it last? I am going on 3 months now, glutening 2 months ago. Popping zofran in the morning and I feel pretty dizzy and queasy the first half of the day. No, I am not pregnant. I also get flu like aches and accelerated heart rate after eating.
  13. ironictruth
    Where do you live? I was going to go to Cleveland but just got an appointment with Celiac Center in Boston. 5 hour drive next month. Hoping it is worth the trip. Might be worth looking into. I just educated a lab on DGP yesterday. They just brought a celiac panel in house and i saw they were using gliadin. I think they are running my sample on...
  14. ironictruth
    I tested positive to deamidated gliadin in August at a hospital. My old GI tested me using gliadin (the test listed on your result) in September and it was negative. Literally the next day, my new GI tested for deamidated gliadin again and it was positive (I was unaware the hospital scheduled an appointment with the new GI for follow up). If you still...
  15. ironictruth
    Yes, the pain us much worse since August. Let me know how you make out!
  16. ironictruth
    I was dx with duoedenitis end of August. No mention of a stomach, esophagus or duoendal ulcer. Just a small hernia. Less then 2cm. But I have a LOT of pain right below the breast bone and I jumped when it was recently touched on exam. I can even feel a small bump in the area. I feel so dizzy and unwell, like some kind of bacteria is invading my brain and...
  17. ironictruth
    I have seen articles linking celiac to Barretts and esophagitis. I've actually been subtly hinting to my boyfriend to get tested for celiac as well because he has some strange Autoimmune arthritis as well as Barrett's and some white spots on brain MRI Not MS). One of the articles I read on Celiac and Barrett's actually suggested that most of the patient...
  18. ironictruth
    Thank you! I emailed the company too but the last time I did that with one I never heard back. I hate to chance it but could use some relief!
  19. ironictruth
    Has anyone taken sucralfate by teva pharmaceuticals? Carafate was going to cost me $$$ so I was given the generic. It is not listed on glutenfreedrugs.com and nothing is online I emailed the company but not sure how long it will take for a response.
  20. ironictruth
    Gliadin was replaced by Deamidated Gliadin (DGP) as a test roughly 10 years ago. tTg IgA is still a useful test. Your GI may not even be aware of this. My first one was not. Non celiac gluten sensitivity does not present with positive antibodies, at least per Fasso at Mass General. I have been through mountains of tests too and still going. I...
  21. ironictruth
    Thanks guys. Very frustrated today. Was told I have Hashimoto's Disease. I knew my thyroid was swollen as neck/ear pain started kicking in during a gluten challenge. Went to ENT-nothing, pcp said sinus issues, blah blah. I finally asked for an ultrasound Of the thyroid which pointed to Hashimoto's but the antibody test the primary ordered was negative. ...
  22. ironictruth
    I am currently skipping the lipstick but switched over to Physicians Formula for everything else Per my endo. Most of what they do is gluten-free and will say it right on the package.
  23. ironictruth
    Initially I had mildly elevated blood work and a normal Endoscopy last winter. Since July I kept telling my doctors that I had upper abdominal pain and nausea and because I was scoped already last year they pretty much told me it was in my head. After 24 hours of D recently and a bunch of other crazy symptoms (heart palps, near syncope, numbness) they scoped...
  24. ironictruth
    I know. It is just my upper insides feel so bruised and tender. It is actually what led to me putting a stop to running (that and the endo said to for now) every time my foot would hit the treadmill I could feel the pain even more in my upper stomach I have been using slippery elm and marshmallow root. Not overdoing it though just small amounts. I...
  25. ironictruth
    The weak positive was last year (21). 19 and under is normal. It was 13 or 15 in July (cannot recall). The test in the hospital in August was a 28 (borderline) then a 32 a few weeks later. I think the 32 is moderate range. They retested a month later and it was still 32. A pathologist did send me an article and in no way does it say DGP IGA is not reliable...
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