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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
    Welcome to the forum, @Sherm11! Yes, it is true. If you embark on a gluten free diet or even significantly reduce gluten intake previous to either of the two types of testing used to diagnose celiac disease you will compromise or even invalidate the test results. Normally, there are two stages of testing. The first involves a blood draw to test for specific...
  2. trents
    Welcome to the forum, @KierstenL! For clarity's sake, you are a self-diagnosed celiac who has not been formally diagnosed, correct? Are you still eating oats, even gluten-free oats? Dairy and oats cause the same reactions as gluten in about 10% of the celiac population. Their main proteins are very similar in structure to gluten. Are you taking...
  3. trents
    Welcome to the forum, @Mia George! You neglected to mention what city you need recommendations for.
  4. trents
    I would not say the instructions your GI doc gave are atypical but I would say they are less than optimal and less than ideal. The after-diagnosis follow-up attentiveness experienced by celiac patients from their doctors will likely be all over the map depending on the personality of the physician involved as well as their level of knowledge and experience...
  5. trents
    Typically, a primary care doc will order the initial round of blood antibody tests. If there are positives in those tests he will then refer the patient to a GI doc who may repeat the antibody blood tests and even order a more complete antibody panel, especially if the initial antibody tests are borderline positive. Following that, the GI doc will typically...
  6. trents
    Welcome to the forum, @Beckyepg! Becky, it might surprise you to know that many or most celiacs are largely asymptomatic for many years until the damage to the villous lining of the small bowel reaches a critical stage. We call them "silent" celiacs. That is largely my story. I had developed osteopenia by the time of my diagnosis at about age 50. I'm...
  7. trents
    Well then, it's remarkable that any of your tests were positive. For those who have been off gluten for significant periods of time and want to undergo valid testing, a "gluten challenge" is in order. this would involve the daily consumption of at least 10g of gluten (the amount in approximately 4-6 slices of bread) for a minimum of two weeks, and preferably...
  8. trents
    Welcome to the forum, @minkgurl! Your normal Immunoglobulin IgA means you are not IGA deficient which means your IGA-based celiac antibody tests should be accurate. The Immunoglobulin IgA is not a test for celiac disease itself. Three out of the five celiac antibody tests (Three IGA tests and one IGG test) indicate you do have celiac disease. It...
  9. trents
    Welcome to the forum, @JacktheDestroyer! Most of us who struggled with celiac disease for years before finally being diagnosed also developed other medical complications that we struggle with. You are not alone. Sounds like your many years of undiagnosed celiac disease has resulted in neurological damage in your case. I say that because of the seizures...
  10. trents
    Welcome to the forum, @MegS123! First, the immunoglobulin A is not a celiac diagnostic test per se. This is a measure of total IGA and if it is abnormally low, aka, "IGA deficiency", it will suppress individual celiac antibody test values such as the TTG-IGA and which can potentially result in false negatives. I do not know that there are any particular...
  11. trents
    I am not sure why the tavern gets so uptight about people bringing in their own food. I mean, really, how many people are actually going to be doing that? Basically, people will go to a tavern to eat the tavern's food. That's why they go there. Certainly, I cannot see it having much impact on their bottom line to allow a few people with dietary restrictions...
  12. trents
    Welcome to the forum, @Adamh! Have you been checked for SIBO (Small Intestine Bacterial Overgrowth) and have you considered that you might have MCAS/histamine intolerance? MCAS is Mast Cell Activation Syndrome.
  13. trents
    Yes, be sure to tell the doctor that you have been mostly avoiding gluten for a good amount of time because that will definitely sabotage celiac disease testing. It is frustrating that you have been the victim of so much indifference and ignorance in the medical community up to this point but unfortunately it is true that your story is not an uncommon one...
  14. trents
    That is a valid question and it is why leadership on this forum has not endorsed the consumption of sourdough bread as safe for celiacs.
  15. trents
    We have had numerous reports over the years of celiacs able to eat sourdough bread without problems when traveling overseas and we have also had some reports of celiacs traveling in some European countries able to eat non-sourdough wheat food items. There was some speculation that it had to do with using heirloom varieties of wheat. Supposedly, modern wheat...
  16. trents
    Welcome to the forum, @EmmaOnFire! Do you know if the French toast was made with sourdough bread?
  17. trents
    It is common for celiacs to develop intolerance/sensitivity to other, non-gluten foods. Chief among them are dairy and oats (even gluten free oats) but it could be almost anything. So, keep an eye out for cross reactions like that.
  18. trents
    When you say you were recently "ghosted" by a therapist, what does that mean? I'm not familiar with the term in that context. My daughter has significant mental health issues. She has a psych professional (ANRP) for medication management but sees a counselor for talk therapy. My point being you can separate the medication prescriber from the therapist...
  19. trents
    Welcome to the forum, @ghostie! Are you on psych meds for your mental health issues? I heartily agree with your dad's suggestion to seek out counseling. You have a lot of issues going on that I doubt anyone would be able to successfully cope with apart from professional help. I would also suggest you connect with a dietician to help you address...
  20. trents
    I certainly was paying attention to everything you posted but apparently the formatting and the terminology deployed is unusual and not what we are used to seeing on this forum. It was very confusing to me and I'm sorry for the confusion it all caused in our interaction. But, if you go back and read my several posts you will see that I agree with RMJ that...
  21. trents
    Yes, missed that. But still, no TTG-IGA? No total IGA? Who ordered these tests anyway? Doesn't seem like they know what they are doing. At a bare minimum, an initial celiac blood antibody testing panel should include a test for total IGA to check for IGA deficiency and the TTG-IGA test. The normal protocol is that if the TTG-IGA is negative but total...
  22. trents
    Is this the first round of antibody testing you have had done? Have you already had any IGA antibody testing done? The reason I ask is from the statement found in your lab report from your second post: "Low IgA antibody levels suspected. Tissue transglutaminase, IgG and deamidated gliadin peptide, IgG tests to follow." But I see no IGA test...
  23. trents
    Welcome to the forum! We cannot comment on your test scores unless you also include the reference ranges for negative vs. positive on each test used by the particular laboratory doing the analysis. Each lab concocts its own test and uses different parameters so the ranges the use for reference vary. There is no industry standard. Please repost and add...
  24. trents
    Welcome to the forum, @Jelly bean! You are not alone! Many in the celiac community go through what you are going through. Much of their reaction is born of ignorance and it might help to gently and patiently educate them as to the nature of the disease. It is an autoimmune disorder which means the consumption of gluten causes the body to attack its own...
  25. trents
    Welcome to the forum, @Rosyjo11! So, for the sake of clarity, you have never been officially diagnosed with celiac disease. Correct? If so, has it occurred to you that you may have been dealing with NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease? They share many of the same symptoms but NCGS does not damage the lining of the small...
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