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trents

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Everything posted by trents

  1. trents
    It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever...
  2. trents
    Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there...
  3. trents
    Welcome to the forum, @Godfather! "Gluten-free" is not the same as zero gluten. The FDA standard for allowing the food industry to us the gluten-free label on a product is that it cannot exceed 20 ppm of gluten. That is safe for most celiacs but not for the subset of celiacs/gltuen sensitive people who are super sensitive. "Gluten-free" wheat starch products...
  4. trents
    Welcome to the forum, @Dana0207! Another diagnostic approach would be to get biopsied for dermatitis herpetiformis which would not require an extensive exposure to gluten. But it would need to be done during an active outbreak of the rash. Celiac disease is the only known cause for dermatitis herpetiformis so it would be a definitive diagnosis. It might be...
  5. trents
    Here is another one that is currently active. I know someone who has recently signed up to participate in it: https://celiac.org/aspirion-us/
  6. trents
    But still, I'm not sure any of this is helpful from a practical standpoint when you are already doing everything you know what to do to avoid gluten since it is merely reporting what has already happened. Perhaps it would give guidance of things to avoid that you mistakenly thought were safe, that is if you could pin down what exactly was the offender from...
  7. trents
    Agreed!
  8. trents
    Okay, but the biopsy needs to be done during an active outbreak of dermatitis herpetiformis. So, if you can accomplish that without long term gluten exposure, that should work. How close together does do the dermatitis herpetiformis outbreaks occur in relation to the gluten exposure? It would be helpful to time that out in relation to your dermatology appointment...
  9. trents
    Welcome to the community @MCAyr! One thing you need to know is that in order for celiac disease diagnostic testing to be valid, you must not have been on a gluten-free diet already. The first stage of celiac disease testing involves looking for the blood antibodies that are produced by the inflammation in the small bowel lining. Once you eliminate gluten...
  10. trents
    Thoughtful article. For me the most valuable element of this article is the discussion of IELs. We have many posts on celiac.com from people who have all the symptoms of celiac disease but whose biopsies show no other irregularity than IELs. Perhaps we should be taking that more seriously.
  11. trents
    Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour...
  12. trents
    A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
  13. trents
    Good catch, @RobinGroenevelt, and an excellent point!
  14. trents
    Understood. It's very anxiety-provoking when you don't know what you are dealing with and don't know if you are attacking it correctly.
  15. trents
    "When comparing gluten-free oat-only products with general gluten-free foods and ordinary oat products, the study found that gluten-free oat-only products had the highest contamination rate. For instance, gluten-free foods in general had contamination rates of around 18 percent, while oat-only products labeled gluten-free had rates nearing 73 percent. Ordinary...
  16. trents
    @NoriTori, you say, "No one said anything about eating gluten consistently until testing, the appointment was scheduled and an address was given. " We hear this all too often. Sloppy medical practice.
  17. trents
    @NoriTori, "gluten intolerance" is a general term that can refer to either celiac disease or NCGS. NCGS is often referred to as "gluten sensitivity" for short. Though, admittedly, there is still a great deal of inconsistency in the use of terms by the general public.
  18. trents
    Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions...
  19. trents
    Welcome to the forum, @Mpanknin! Questions like that really have no definite answer. Even if you tested a container of it for gluten content, the test results would only be good for that production batch. Assume it has some degree of CC. A more important question might be, how sensitive are you to minor amounts of gluten exposure?
  20. trents
    @jeffpine, please realize that GliadinX is not designed to allow you to eat large amounts of gluten without celiac repercussions. It is designed to counteract cross contamination situations where you might be exposed to small amounts of gluten accidentally such as you might get in a restaurant when you order something that should be gluten free but it is...
  21. trents
    Welcome to the forum, @Dema! The current recommendations for the "gluten challenge" leading up to the day of testing are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat bread) daily for at least two weeks. I hope this helps you in your decision. This information represents more recently updated guidelines...
  22. trents
    "Yes, but it was less than I’d normally eat, I felt sick and just restricted everything. I felt like it was something do with gluten so I’d started eating less of it as well - I had something wheat every other day" In order for celiac testing to be valid, you need to be eating a significant amount of gluten daily for a significant amount of time. Fo...
  23. trents
    Welcome to the forum, @NoriTori! Some questions: 1. When you had testing done for celiac disease, whether antibody testing or biopsy, had you been eating normal amounts of gluten for weeks/months leading up to the testing? 2. Did your antibody testing include a "total IGA" test to check for IGA deficiency? 3. Have you considered the possibility...
  24. trents
    Welcome to the forum, @sillyac58! Are you still using this topical medication for this precancerous spot on your lip? If not, are you saying you used it for a limited time and believe it triggered additional ongoing immune system reactions with unpleasant symptoms? I'm not clear on this. Are the oats you use certified gluten free? You may know this...
  25. trents
    Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.
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