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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
    She may be one of those people who got diagnosed only via blood. Some tests can come back false positive. Or maybe only via biopsy and it turns out she had H. Pylori. Who knows. Absolutely could happen though. One of the things that surprised me too was when my doc said it can weeks to months for symptoms to develop on a gluten challenge. I always...
  2. ironictruth
    Yes IELs can be linked to other things. However, increase in IELs, loose stools, and a good response to a gluten free diet would point to celiac. Celiac panels vary lab to lab and not all labs run all of the tests so you might want to post here after you get your results. My brother was negative to the labs run but they failed to run the DGP test...
  3. ironictruth
    Yes, I should add that although the test is not perfect and not totally specific to celiac, it still is a useful test. LIke cycling lady, I test positive to a type of DGP test only and negative to TTG, EMA and other DGP tests in other settings. They tried the IBS-xanax stuff with me to. I finally pIcked up, Went to a Celiac specialist out of state...
  4. ironictruth
    That test can show up positive in other issues outside of celiac, liver and autoimmune to name two. it has been reported to be positive sometimes in folks who are even Gene negative for celiac disease. I was told this by two Celiac centers as well as somebody involved in antibody test developing. however it also picks up a lot of folks with Celiac. It is...
  5. ironictruth
    My heart breaks for you. It sounds awful. I wish you the best of luck and health. Keep advocating and researching and hopefully you will find a medical team that can get to the root.
  6. ironictruth
    Just an update for anyone interested: I did call the pharmacist and explained. He did say the stomach/intestinal warning still applied to the topical cream. HOWEVER, the topical solution would be less absorbed into the gut then the pill version, which seems obvious, so the chance of an issue would be less then say, taking advil. The last time I took...
  7. ironictruth
    Ok, I am looking through your old posts now after commenting on your recent one. Ditto with cycling lady. Shame on them for not ordering the freaking celiac panel. Why would they not order it after the scope to confirm? Will your insurance at least cover the genetic test? 30% of the population has the gene and only a small percentage develop celiac...
  8. ironictruth
    That seems consistent to me of someone with celiac whose damage was not so severe or long that they could not respond to iron. I have Marsh II-3A damage and my ferritin went from in the 70's prior to my first gluten challenge to 20. After 3 months of iron it was back up to the 30's. Being on iron btw can give the ACTUAL SERUM iron read a FASLE high level...
  9. ironictruth
    Thanks guys. I do use slippery elm and marshmallow tea when I can feel gastritis starting. I do not think it is all intestinal for sure. I did fall pretty hard there 6 months ago but the xray was normal. so the rib-nerve issue could make sense. I worry About any warning for stomach/intestine because I already have documented issues with both...
  10. ironictruth
    So I continue to have this pain in my right rib cage and into my back. Sometimes it's a deep pain which I assumed was related to gluten and other times I can just touch my rib cage and it's tender. it comes and goes although there's always something on the right hand side whether it be pressure or pain. Some days it's a lot worse, some days it's not...
  11. ironictruth
    To add to that, good about your iron and enzymes! The gluten-free diet is naturally deficient in B vitamins. They have a tendency to hide in your standard loaf of bread but not in the gluten free stuff. Did they also happen to prescribe you a PPI or acid reducer? Because those can interfere with absorption as well. How drastically did your...
  12. ironictruth
    Increase in IEL can be caused by other things but with positive antibodies and gene it sounds like early celiac. The diagnosis of "possible celiac" will likely turn to celiac when you see improvement on the diet. Folks always forget that is one of the most important criteria. I literally just typed this and scrolled up and read Ravenwoodglass' comment...
  13. ironictruth
    I went through two years of docs, 3 endoscopies, two gluten challenges and conflicting serology results of the SAME antibody even while ON gluten. My specialist now is Dr. Fasano (the last biopsy showed Marsh 2-3A). Both Fasano and other researchers have acknowledged DGP is fallible but better then AGA. The original doc who "discovered" AGA (Volta) also...
  14. ironictruth
    Has your iron been checked? I started supplements to avoid anemia but asked the doc to re-test to make sure I am not getting too much. You do not want to take too much iron. I use Solgar gentle iron (lower dose) and Vitron C (vitamin c helps absorption). In three months I brought my ferritin up from 20 to 33. It had been in the 70's. So, my body...
  15. ironictruth
    My brother was reportedly seronegative. However, I recently found out he had only the TTG and EMA done. They did not run the DGP. He is DQ2, positive biopsy. His son was screened, also only for tTG and EMA and was negative. He has DQ2 though. I am TTG and EMA negative. My DGP is negative when separated into DGP IGA and IGG, however, it is positive on...
  16. ironictruth
    Positive no gluten in the diet? A 10 year-old in a sport with the new school year starting....
  17. ironictruth
    There is a real problem with probiotics labled gluten free having gluten in them. There are some articles on the issue. https://mobile.nytimes.com/blogs/well/2015/05/19/many-probiotics-taken-for-celiac-disease-contain-gluten/?referer= As a result, I stick with Klaire Labs. Only a smaller dose because I am of the opinion too much of anything is...
  18. ironictruth
    Bummer. I love mushrooms! Well, at least I can have them now and again if I purchase the certified ones. No more Farmer's market mushrooms.
  19. ironictruth
    it won't let me attach the photo. Mother Earth is the brand. Distributed in PA. I had no clue I needed to be concerned about eating mushrooms. I also just recently found out I have to be concerned about Capers as well. But I did find a certified gluten-free brand of capers.
  20. ironictruth
    Okay guys, this one's new for me. There is a certified gluten-free logo on the label of my portobello mushroom caps. Anyone care to explain to me why this is the case?
  21. ironictruth
    Yes, that could easily be a false positive. there is plenty of research on folks with perfect biopsies, even those who are genetically negative for celiac disease, with positive DGP results. By the same token, the test also picks up a lot of folks with celiac. But as others have said, with a family history it is good to load up on gluten and...
  22. ironictruth
    I do not have any answers for you but wanted to provide a virtual hug. H. Pylori can cause villi blunting too which i know you said she had. There are also immune deficiency disorders as well. But two copies of the gene... People are offering good advice about the time it can take to heal. Additional meds etc may cause more symptoms. As...
  23. ironictruth
    So, I know of a couple of studies. They are in my brain Attic somewhere but it needs some serious dusting so give me a while to find them. they do support the strong possibility of false negatives. However, eons ago I worked in a medical records department. And I can't tell you how many times I went to file a positive result on a lab that had not...
  24. ironictruth
    I get both petichae ( can be caused by low platelets, vitamin C deficiency, vitamin K deficiency and just generally having sensitive skin) my son got petechiae when he was young once AnD His pediatrician told us not to give him ibuprofen as often when he was sick with a fever as it would contribute to the breaking of blood vessels. and I also used to get...
  25. ironictruth
    Hello, I was there in April for the same reason but unfortunately cannot comment on the gluten free restaurants because I was on a gluten challenge. So I pretty much found any Italian restaurant I could every night that I was there. However, fairly close to the hospital, just a few blocks down, there is a Whole Foods grocery store tucked away in a plaza...
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