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trents

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Everything posted by trents

  1. trents
    test
  2. trents
    Most of us who are celiacs deal with one or more spinoffs of the disease. My understanding is that leaky gut is inevitable with celiac disease, that it is part and parcel of the condition. Personally, I strongly suspect that I suffer from histamine intolerance as well. At least at times. Do you find that the DAO supplements help? Did you realize that...
  3. trents
    You're saying soda pop contains gluten?
  4. trents
    Being on a gluten free diet for more than a week or two will likely invalidate the testing. That probably explains your odd results and so many negatives. If you want to get accurate test results you will need to be eating gluten daily for 6-8 weeks leading up to the test, consuming an amount of gluten equivalent to two slices of wheat bread daily.
  5. trents
    That sounds more like an allergic reaction than a celiac episode. Different immune system pathways.
  6. trents
    "Endomysial IgA antibody testing has a lower sensitivity than tTG IgA (positive predictive value = 79%; 95% CI, 71.0 to 85.5) and equivalent specificity. It is included in several diagnostic algorithms but is not considered a first-line test in any patient population." https://www.aafp.org/afp/2017/0601/p726.html A very unusual test result when the Endomysial...
  7. trents
    How were you tested for celiac disease? Blood antibody tests? If so, which ones and can you post the values including reference range? Have you had an upper GI endoscopy with biopsy to check for villi blunting of the small bowel. Another possibility might be SIBO or H. Pylori.
  8. trents
    I think you left something out of your post. Namely, the values themselves. We need the reference values as well to be able to know what normal range is for each test. Different labs used different reference values.
  9. trents
    Yeah, I don't have any ideas for the persistent/reoccurring fever. The pattern of that is unusual. Seems like it might be tied to some kind of diurnal bio rhythm mechanism. Have you had his thyroid checked?
  10. trents
    Please do.
  11. trents
    Just a heads up, here. If you do decide to go for an upper GI endoscopy do not start your child on a gluten free diet ahead of time. It will likely invalidate the results. He needs to be eating regular amounts of gluten daily for at least two weeks before an endoscopy/biopsy. Also, to clarify something Scott said, there currently is no noninvasive test...
  12. trents
    Transglutaminase IGA—24 (normal <19.9, indeterminate 20-39, >40 pos) I'm guessing this is what we usually call tTG-IGA which is the least sensitive blood antibody test for celiac disease but also the most specific. So, when it is elevated it points strongly to active celiac disease. This is the first time I have seen an "indeterminate" category. ...
  13. trents
    Tim, your advice sounds good on the surface but may not be sound. First, serum calcium levels are seldom low with celiac disease because the body keeps them stable by leaching it from the bones. If serum calcium levels are low, it is usually an indicator of some other disease process, medications or vitamin D deficiency that blocks calcium uptake or binds...
  14. trents
    Yeah, I hear you about living in a small town. That certainly can be problematic for those needing to eat gluten free. We live in a town of about 15,000 and there are a few options that are somewhat celiac friendly. Most of our family is understanding. An exception might be my brother in law. I think the hardest thing for me is when people invite us over...
  15. trents
    Welcome to the forum, kristid4d! After reading your description of the testing and the doctor's remarks, there is no doubt in my mind that you are a celiac. "Consistent with celiac disease" communicates exactly what you would expect if the endoscopy showed blunted villi. You are making up any equivocation in that instance. And your serum antibody levels...
  16. trents
    I would recommend taking a high potency B-complex. Don't worry about overdoing it on B-vitamins as they are water soluble and any excess will be excreted in your urine. Tonedown, what do you mean by saying you are following a "99% healthy diet"? Are you following a strict gluten free diet yet? If not, taking vitamins is no substitute for eliminating...
  17. trents
    Another thing from the article to note is that the doctor said, with regard to the blood antibody test, the first test was negative so "there was no point in running the others." A red flag went up when I read that. That "first test" was likely the tTG IGA test which is the most specific but the least sensitive for celiac disease. Physician ignorance of...
  18. trents
    Seldom does anyone "match all the symptoms" for any disease.
  19. trents
    Make sure you included the reference ranges. Different labs used different reference ranges.
  20. trents
    Do you have access to the blood test results and can you post them. We would like to see exactly what tests were run and what the values were. The experience of the celiac community on this forum is that relatively few gen practioners, and more than a few GI docs, are not very knowledgeable about Celiac Disease. And yes, we have forum members whose blood...
  21. trents
    You may have developed histamine intolerance. Wines and many foods are naturally high in histamines. If your body does not produce sufficient DAO to break histamines down then you could have problems such as you describe. Also look at SIBO. Both conditions are common in the celiac community.
  22. trents
    It often takes two years or more for the gut to completely heal after going gluten free. If blunting and symptoms persist after going gluten free and there has been sufficient time for healing, something else is causing the blunting. Recent studies reported by NIH have shown that the mile protein casein can cause blunting in some individuals and some medications...
  23. trents
    Processed food manufacturers can and not infrequently do change the formulations of their products. You may be eating something that used to be safe for you but is no longer gluten free.
  24. trents
    DGP is usually run when total IGA is low. Low IGA can give invalid results for Ttg IGA and other IGA based tests. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ Gluten free/gluten free certified processed foods typically utilize many texturing substitutes that our digestive systems are not used to and may not handle well....
  25. trents
    I am not aware of stool tests for celiac disease but there is a finger prick home test kit available: https://www.imaware.health/ Another option would be to put your child on a strict gluten free diet for a trial period and see if the symptoms improve. But be aware that he must be consuming gluten regularly for any celiac disease test to be valid. Many...
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