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trents

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Everything posted by trents

  1. trents
    Welcome to the forum community, @Zonisamide! Any answer to your question would necessarily be conjecture at this point. We do know that neurological disorders are among the medical problems associated with celiac disease. But to say in any particular case that celiac disease is necessarily the cause of a person's neurological problems would be impossible...
  2. trents
    Welcome to the forum community, @David G! I don't know that you can draw any conclusions one way or the other from this data. In either case, the numbers do not indicate a high degree of inflammation IMO. It does appear your son may still be getting some gluten contamination. When he was originally diagnosed, was there an endoscopy/biopsy done? If so...
  3. trents
    I would trust it, yes, to at least meet the <20ppm requirement for the FDA categorizing something as gluten free. But then, I'm not a super sensitive celiac and minor amounts of CC don't seem to cause a reaction in me. I think it is a positive sign that the source company was straightforward and gave detailed information about their cleaning procedures...
  4. trents
    I certainly would not conclude that you are in the clear. There is a big question mark about whether or not you are consuming enough gluten to render valid test results. In addition, you have a family history of celiac disease, you have symptoms and you have genetic potential. A couple of recent studies done with larger groups, one of them was done by the...
  5. trents
    Welcome to the forum community @mslew10! The reason you have run across so many different "normal" values for the tTG-IGA is that there is no industry standard and each lab develops there own tests and their own scales. So, the values you posted are not helpful to us unless you also post the scale used by the lab that analyzed the blood sample. The second...
  6. trents
    Welcome to the forum community, @Carlyallyn! The test result you posted is not directly a test for celiac disease but it is what we call "total IGA" and is run to check for IGA deficiency. If a person is IGA deficient then the specific antibody tests run to check for celiac disease can yield scores that are skewed toward the negative side and so are...
  7. trents
    Although the terminology is still applied inconsistently, my perception is that there has been an evolution toward using "gluten intolerance" with reference to celiac disease and "gluten sensitivity" with reference to NCGS. Isn't vitiligo loss of pigmentation in the skin? Did you mean to connect that with a red blood cell deficiency? There can be an...
  8. trents
    Welcome to the forum community, @PhilHandy! The Tissue transglutaminase Antibody IGA or, tTG-IGA for short, is the most common celiac blood antibody test ordered by physicians when checking for celiac disease. It combines good specificity with good sensitivity and is relatively inexpensive to run. However, it can produce false negatives in the case of...
  9. trents
    Welcome to the forum community, @natalieadams! Are you sure it isn't the flu or COVID?
  10. trents
    Thanks. It is often prescribed for those with IBS. CINDYR, have you been officially diagnosed with celiac disease?
  11. trents
    Welcome to the forum community, @CINDYR! Can we ask, what is the name of the medication?
  12. trents
    Welcome to the forum community, @Cristal31! Products like this are always a crap shoot for celiacs. The gluten content from cross contamination will likely vary from one batch of the product to another and will cause reactions for those celiacs in the more sensitive range of the spectrum but not for those who are less sensitive or who are "silent" celiacs...
  13. trents
    Welcome to the forum community, @Dawn R.! Let me assure you! Many on this forum have posted about experiencing gluten ataxia and neuropathy. These are now well-known symptoms of celiac disease and also NCGS (Non Celiac Gluten Sensitivity) among those in the know. Unfortunately, it is not yet general well known in the medical community as a whole. But...
  14. trents
    So, for clarity's sake, did you start to feel unwell again only after B12 injections were discontinued or had you already begun a gluten free diet and then discontinued it?
  15. trents
    Even though the wheat straw may naturally be devoid of gluten, is there cross contamination in the processing?
  16. trents
    Welcome to the forum community, @litledebbie! The problem with any products made from "de-glutened" wheat is that the processes used to remove the gluten are never 100% thorough. There is always a residual amount left but small enough it may meet the FDA requirement of less than 20ppm for using the "gluten free" label. Another question would be, how...
  17. trents
    Welcome to the forum community, @Georgiajafa! Yes, we do have anecdotal reports on the forum of those with celiac disease who seem to go into remission for a period of time. My observation is that most of these cases are with people who are originally diagnosed as youths. I cannot tell you anything you don't already know so I will not offer an...
  18. trents
    Welcome to the forum community, @Jennybean15! From your narrative, it is evident that your physician suspects your are IGA deficient. However, there is no indication from the information you posted that he/she actually ran a test for "total IGA" to test for IGA deficiency. Was a test for total IGA run at a different time? The one test you do mention...
  19. trents
    Welcome to the forum community, @Jennybean15! From your narrative, it is evident that your physician suspects your are IGA deficient. However, there is no indication from the information you posted that he/she actually ran a test for "total IGA" to test for IGA deficiency. Was a test for total IGA run at a different time? The one test you do mention...
  20. trents
    Sounds like a good plan. I'm impressed that the GI doc thought about the genetic test. It can be helpful in ruling out celiac disease, though the genetics of it aren't quite as cut and dry as originally thought.
  21. trents
    Yes, it is possible. It would have been helpful had your physician run a more complete celiac panel. It is also possible that you are transitioning from NCGS (Non Celiac Gluten Sensitivity) to celiac disease and are in the early stages of villous atrophy damage. NCGS and celiac disease share many of the same GI symptoms.
  22. trents
    misslemon, an "immune reaction" and an "autoimmune" reaction are not necessarily the same. Both NCGS (Non Celiac Gluten Sensitivity) and celiac disease involve immune system reactions but only celiac disease involves an autoimmune reaction. Autoimmune reactions are those that cause the body to attack and damage it's own tissues.
  23. trents
    Welcome to the forum, @EmilyZ! Yes, it does get better. In time you will develop a sixth sense of what you should avoid and you won't have to think so much about it. Are you getting good support and understanding from family and friends or a lot of opposition? Also, after many years of being misdiagnosed you are probably suffering from nutritional...
  24. trents
    But you said he biopsied the stomach and not the duodenum/small bowel which is the part that needs to be biopsied when checking for celiac disease.
  25. trents
    We were in Frenchtown/Alberton for three years and then in and around Libby for 5. Kalispel is a gem of a city. Absolutely gorgeous area. Lactose (the sugar component of milk) is a problem for many celiacs but for some it is the protein, casein, in dairy that actually causes villi blunting like gluten.
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