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LP023

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by LP023

  1. LP023
    This comes from the FDA. It’s no surprise that Gluten Free labeled foods test higher than they should. They aren’t required to test and when they do get caught it is a slap on the wrist and maybe a fine. We need gluten listed as an allergen like 80+ other countries. It’s pretty much the honor system. Are manufacturers required to test for gluten to ma...
  2. LP023
    Of course it depends on where you look and research. My guess is they really don’t know. My gastroenterologist told me TTG absolutely does not diagnose celiac.
  3. LP023
    I’m saying they may have been misdiagnosed and actually have something else.
  4. LP023
    As many as 5% test false positive on the TTG. That is why it is followed up by an EMA. We always ran a follow up on any antibody test in the lab. You wouldn’t believe how many false positive HIVs we had on the elisa and followed up with a western blot and it was negative. Never diagnose based on a TTG. Especially low. The same illnesses that cause false p...
  5. LP023
    Cheaper than a scope.
  6. LP023
  7. LP023
    It’s perfectly fine. He was commenting on the post I made. I was only saying that the link to cancer in celiacs may not be a direct link. It could be the processed gluten free foods we eat. The gluten free processed food could be the reason we have a higher risk of cancer. (According to their study) Many other studies say something different. 🙂
  8. LP023
    That’s just me. It’s full of junk. I wasn’t much of a carb eater to begin with so the diet has been easy for me. My biggest worries come from accidentally getting it. Knowing the link between celiacs and diabetes I just stay away from it. If someone needs it to feel better mentally I say go for it.
  9. LP023
    No doubt it’s bad. Sugar feeds it all. From what I can tell the gluten free options for are even worse than the regular. I haven’t bought a single loaf of gluten free bread or crackers. I did buy gluten free macaroni and cheese once. I’d rather not have it. I’ll stick to the meat, fruit and vegetables and things that don’t have it but I won’t buy the glu...
  10. LP023
    I think there is a possibility that the processed gluten free replacements could be causing the cancers. Gluten free bread, crackers and all of the other food we eat to feel normal is usually full of junk to make it taste good and also is usually higher in calories and sugar. Those who opt for whole foods may not have this issue. Just a theory.
  11. LP023
  12. LP023
    I agree. The studies I’ve read say colorectal cancer is actually lower in celiacs. Also the chances are small in the general population. The chances may be slightly higher in celiac but still not likely. It’s very frustrating and celiac diagnosis and treatment is a total crap storm. One study says one thing and another completely contradicts it. That tel...
  13. LP023
    It’s more accurate, more time consuming and more expensive. It was replaced by the TTG because it’s cheaper and faster. Coming from an old co worker from the lab. My levels weren’t 10 times just 10 over the limit. Mild villous blunting was on the pathology report. It didn’t give a level. My gi told me she thought 3A marsh score but it wasn’t given. 🤷🏻‍♀️ Ei...
  14. LP023
    Not 10xs. The cutoff was 15 I think. Mine was 25.
  15. LP023
    https://www.sciencedirect.com/science/article/abs/pii/S0022175920302040 An EMA should always follow a positive TTG. Lab corp doesn’t do this but quest labs automatically ran an EMA. Quest put a note saying inconclusive since one was positive and one was negative.
  16. LP023
    This isn’t the ones I first read awhile back. But a quick google popped this up. https://pubmed.ncbi.nlm.nih.gov/14740501/
  17. LP023
    I’ve seen it with my mom. She has mast cell and is finally doing well with treatment for that. There are also several studies saying the chances of someone having celiacs with a negative EMA following a positive TTG are very small. I did have a negative EMA. I am gluten free. Treating myself as if I do have celiac so denial there. I do believe many are b...
  18. LP023
    I’m like you. I’ve read the craziest things though. Sometimes we just get stomaches, gi issues, brain fog and tired like like everyone else. Every issue isn’t cross contamination. If someone scrubs a stainless steel pot twice and then cooks chicken in it they aren’t cross contaminated from that pot. Every spice isn’t cross contaminated at the factory. These co...
  19. LP023
    Do the research on that. Crohns improves for a lot of people on a gluten free diet. Some people feel better with a vegetarian diet and some all meat. You can have crohns without celiac. My mom was misdiagnosed with crohns, uc and celiac by different drs. She had several scopes, biopsies and blood test. The gold standard diagnosis for all of them. After 1...
  20. LP023
    Someday we will know how this all works and the advice people are being given today will sound crazy. Something I’ve noticed since being diagnosed is people aren’t willing to consider that the advice we’re being given could be wrong. The lack of knowledge in the medical community is unbelievable and the advice from one doctor contradicts another. Most are g...
  21. LP023
    I also believe many are diagnosed with celiac when they have something else. TTG can be false positive. Villous atrophy can be caused by many things. That was on my pathology report. My EMA was negative. 3A villous blunting on marsh. TTG was around 10 over the limit. The reason many are non responsive is because they don’t truly have celiac.
  22. LP023
    Being safe causes a lot of joy to removed from your life. She is able to go out with her kids to restaurants, she doesn’t overly stress about bread crumbs on her bar, she lives her life. There is a point where quality of life is better than length. The chance that something could happen 20 years from now because of a bread crumb a day takes away from today. ...
  23. LP023
    My aunt was diagnosed by blood and biopsy in 2011. She had the proper diagnosis. She still eats out, isn’t extremely careful in her home. She avoids the obvious exposure. She has her TTG repeated every six months has had repeated scopes and she has healed her damage and blood is good. I know she has to be getting cross contaminated because she eats out a...
  24. LP023
    I know 3 celiacs that’s have their levels checked every 3-6 months.
  25. LP023
    This isn’t really aimed toward those who have severe symptoms. I truly believe a lot of us are misdiagnosed. The tests aren’t as accurate as we believe. There are a lot of things that cause the same intestinal damage and a lot of us can tolerate a lot more gluten than the advice we have been given even when we have truly have celiacs after the intestines hav...
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