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trents

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

Everything posted by trents

  1. trents
    There is no reliable test for NCGS (Non Celiac Gluten Sensitivity). Celiac disease must first be ruled out. They share many of the same symptoms but NCGS is 10x more common.
  2. trents
    Please realize that if you decide to stick with the gluten free diet it will invalidate any form of testing for celiac disease. I also wanted to say that 3rd party blood antibody testing for celiac disease is available through companies like Imaware for about $100 US.
  3. trents
    The connection with celiac disease and eosinophils/globulin would be indirect and could be by many other conditions. So, the answer is "no". Celiac disease cannot be diagnosed with these other labs but they can be a clue that suggests the need for testing that is specific to celiac disease.
  4. trents
    This happens to many celiacs for one of two reasons: 1. They develop lactose intolerance or 2. they develop intolerance to the protein "casein" found in milk. Casein closely resembles gluten in it's molecular structure. The "leaky gut syndrome" that accompanies celiac disease causes the immune system to falsely identify safe food proteins as invaders.
  5. trents
    Also, have you been checked for pernicious anemia? This is anemia caused by death of the parietal cells in the stomach. These cells produce "intrinsic factor" that is necessary for B12 assimilation which in turn, is necessary for iron assimilation. Have you had your B12 levels checked? And concerning your pulmonary embolism, I had bilateral pulmonary...
  6. trents
    Welcome to the forum, KatrinaMindy! Can you be more specific about which IGA and IGG tests were run? Can you post the results both test numbers along with the ranges used by that lab to determine negative vs. positive? There are also DGP and EMA tests that can be run to detect celiac disease. Do you know whey the doctor did not do biopsies of the...
  7. trents
    It can be wheat. You'd better contact the dispensing pharmacy and get contact information for the medication's manufacturer to ask specific questions about that med. https://www.beyondceliac.org/living-with-celiac-disease/gluten-in-medication/
  8. trents
    Welcome to the forum, the ParaplegicCeliac! Your story is a heartbreaker but I urge you to keep in mind that the GI doc's opinion is just that, an opinion, even though the circumstances suggest it might be correct. Most of us lived with celiac disease for a significant number of years before being diagnosed. In my case, my first symptoms were elevated...
  9. trents
    Links to credible references please, marcus. There are plenty of unqualified "experts" who make a living off of sensational claims that run counter to mainstream scientific opinion.
  10. trents
    Kudos to your rheumatologist for running a celiac panel and a more complete one at that! Many docs will only order the tTG-IGA as it is the single best test for diagnosing celiac disease. It combines good sensitivity with good specificity and is around 98% accurate. However, for whatever reason, some people's immune response is atypical and they will throw...
  11. trents
    Because it tastes good.
  12. trents
    The Mayo Clinic guidelines for a pretest gluten challenge for those having eaten gluten free for a while is the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to the day of the blood draw. Sounds like your second testing was negative because you had started eating gluten free already. You may also have NCGS...
  13. trents
    Welcome to the forum, Victoria. The DGP test is considered a secondary test as it is not as accurate as the tTG-IGA. The tTG-IGA is the most common test that physicians order to check for celiac disease because it combines good specificity with good sensitivity. It is 98% accurate. Sometimes the DGP will catch those who do have celiac disease but whose...
  14. trents
    As I said, NCGS and celiac disease share many of the same symptoms. We know much more about the way celiac disease affects the immune system than we do about how NCGS does. Some experts believe NCGS can be a precursor to celiac disease. What we do know is that both conditions produce collateral damage to other body systems. For instance, gluten ataxia, a...
  15. trents
    That's another reason to consider NCGS.
  16. trents
    Again, it is possible you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. NCGS is 10x more common than celiac disease but shares many of the same symptoms. There is no reliable test for it yet but we sometimes see the less specific, non IGA antibody levels elevated with NCGS. Celiac disease must first be ruled out to arrive at an NCGS...
  17. trents
    Yes, the 368 is for total IGA and the IGG was ordered as a reflex test, probably because you were negative for the tTG-IGA (the most common and well-rounded test available) but still had celiac symptoms. IGG will sometimes catch those who actually do have celiac disease but don't throw a positive for the tTG-IGA as expected. Those alternate antibody tests...
  18. trents
    The IGA was run first and it's results prompted (physician to run the secondary IgG test.
  19. trents
    Welcome to the forum, Stacey grint! Can you post the results of the specific blood test or tests done for celiac disease on your daughter? Please include the ranges for positive vs. negative as each lab uses their own scale. When they did the endoscopy on your daughter did they biopsy the lining of her small bowel to check for damage to the villi...
  20. trents
    It isn't specifically testing for anything. "With reflex" usually means a secondary test was ordered because the primary test result was unexpected or because the physician was aware that the primary test might be inaccurate due to say, the patient having already begun a gluten free diet.
  21. trents
    https://pubmed.ncbi.nlm.nih.gov/25925933/ The IGG was one of the first celiac disease tests developed. It came along in the 1980's. It is only about 80% accurate, and I take that to refer to it's specificity. The tTG-IGA is 98% specific for celiac disease. For all of these antibody and gliadin tests you would need to have been consuming gluten regularly...
  22. trents
    The Mayo Clinic guidelines for a pretest gluten challenge is the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to the day of the blood draw and fro two weeks leading up to the day of the endoscopy/biopsy. You fell well short of that and no doubt it skewed your antibody test numbers downward. Your physician...
  23. trents
    Arby's lists their crinkle fries in the "gluten free" section of their menu I discovered the other day so I wanted to try them. My wife went their last night to pick some up for me and she asked them if the crinkle fries were cooked in a dedicated fryer. They told her they were not. So, she passed on them. Whether or not they would have still tested under...
  24. trents
    Ask your neurologist if he's ever heard of gluten-related ataxia. https://pubmed.ncbi.nlm.nih.gov/25925933/
  25. trents
    Unfortunately, this lack of meaningful information and explanation from the medical community is more common than not and many new celiacs feel left high and dry.
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