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trents

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Everything posted by trents

  1. trents
    Even if most celiacs are not on this forum, you must admit that this forum represents a very large statistical base. No research study can survey or test all people who have a given medical condition but the larger the test base the more weight it's findings carry.
  2. trents
    Perhaps "most celiacs" is an overstatement when applying it to development of other autoimmune diseases and food intolerances. But you don't have to hang around this forum very long to understand that these attendant conditions are very common to the celiac community. There is a statistical correlation between celiac disease and the development of other autoimmune...
  3. trents
    Welcome to the forum, Joel! I have an uncle that was diagnosed with celiac disease maybe 8-10 years ago. He is 89 years old now. He made a half-hearted attempt to eat gluten free for a bit but then abandoned all efforts. Being a celiac myself, I cajoled him to get on the gluten free bandwagon but it became clear to me he made a conscious decision to...
  4. trents
    Yes, I would get that test repeated so that you have a current assessment. And as Scott said, I would also be on the lookout for other food intolerances that might be causing gut inflammation. I would consider eliminating dairy to start with and see if the pain goes away. Many celiacs can't tolerate dairy. If dairy isn't the culprit, try eliminating chicken...
  5. trents
    Lynn, Did you mean "tTG-IGA"? If the reference range is <20, 31 would mean she is still getting inflammation in the small bowel.
  6. trents
    Which antibody level was 31 and what is the reference range for that? There is more than one antibody test that can be done for celiac disease. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ Yes, the development of other food intolerances is very common in the celiac community. Dairy, egg and soy and corn are very common ones...
  7. trents
    Ditto to what Scott said. Concerning her fatigue, has she been checked for iron/ferritin levels and vitamin deficiencies? It is very common for celiacs to have vitamin and mineral deficiencies. It's been two years since her diagnosis. Has she had any follow-up testing to check celiac antibody levels or villi healing?
  8. trents
    I guess I should ask this obvious question. Do you get these symptoms only when drinking beer or do you also experience them when eating other wheat products such as bread and pasta? If it's only with beer then I would not think celiac disease or gluten sensitivity is the issue.
  9. trents
    I have not heard this before but we are learning more and more about celiac disease all the time and the variety of ways it affects the body. Certainly, nausea and stomach pains are common with celiac disease when gluten is ingested. And cold sweat and chills are common with nausea and vomiting. This is my experience. Dry heaves usually come after the...
  10. trents
    Welcome to the forum, Cody! Have you been tested for celiac disease? You don't say so but the fact that you are posting on a forum for celiac disease makes me think you are suspecting you may have it.
  11. trents
    Welcome to the forum, Meena! Sounds like you have been diagnosed by some doctor as having celiac disease but without proper testing for the disease itself. The first stage of testing would involve blood tests that look for specific antibodies produced by celiac disease. Here is a primer on the blood tests for celiac disease: https://celiac.org/about...
  12. trents
    Welcome to the forum manfrdy! First of all, if you have already begun the gluten free diet effort your serum antibody test results will likely not be valid. The pretest gluten challenge guidelines for serum antibody testing are daily consumption of gluten in the amount equivalent to two slices of wheat bread. Here is a link outlining the antibody...
  13. trents
    "The catalyst" or "a catalyst"?
  14. trents
    Diane, are you still getting phlebotomies to siphon off excess iron? You say the iron levels eventually normalized after several phlebotomies but it's not clear from your post if it remained that way after going gluten free.
  15. trents
    Amy, your post is confusing as to the chronology of when you were eating regular amounts of gluten prior to and after testing. You say you are "still in the testing phase" but you apparently went gluten free at some point but then went back on gluten after a long time of being off gluten and didn't get sick. The guidelines for valid testing are to have...
  16. trents
    Mommacos, welcome to the forum! Sometimes celiac disease manifests itself dermally (skin) rather than enterically (gut). Unless there is inflammation in the gut, your serum antibody tests will be negative. Having said that, can you take a closeup picture of your rash and post it here. DH has a distinctive look to it and one of the defining characteristics...
  17. trents
    That's fascinating! Thanks for sharing this. As time goes on we are discovering more and more medical issues related to celiac disease that no one would ever have suspected. An unhealthy gut makes for an unhealthy body.
  18. trents
    Par for the course. Most physicians don't know any better. They are not knowledgeable about celiac disease.
  19. trents
    Usually, the blood work is done first since it is non invasive and cost efficient. As RMJ said, 6-8 weeks of consuming gluten daily in the amount equivalent to two pieces of wheat bread.
  20. trents
    Ruu, so I understand you to say that you have a biopsy coming up soon? If it is positive then you have a firm answer. If not, the only other course of diagnostic action would be to commit to going gluten free and see if your symptoms improve over a period of weeks or months. If they don't, gluten is not the problem and you can look elsewhere. Just take one...
  21. trents
    Actually, that is not true, strictly speaking. There are two primary manifestations of celiac disease, classically speaking that is. One is small bowel lining inflammation/villi blunting and the GI distress that typically (but no always) accompanies it. The other is dermatitis herpetiformis (DH). Typically, people have one or the other of these classic manifestations...
  22. trents
    You have had that test and hopefully caught the disease at an early stage before you have experienced prolonged inflammation/damage to the small bowel villi and the health problems that ensue from that. If you want confirmation that you have celiac disease or not, you would need to go to the next step of diagnosis which is the endoscopy/biopsy. This...
  23. trents

    Confused and upset

    trents replied to Belll's topic in Doctors

    Your experience is not uncommon, believe me! Many doctors, especially older ones are not knowledgeable about gluten-related medical problems. They are relying on very old information from their medical school training when it was thought that celiac disease is a very rare condition than affects only about 1 in 5000 people. Today, we know that the number is...
  24. trents
    Some celiacs show atypical serology results and that's why it can be necessary to run the full celiac panel rather than just the tTG-IGA. Your total IGA at 226 is not low. Low total IGA can skew the celiac antibody tests toward the low side. My suggestion would be to either: 1. Go back on gluten daily for 6-8 weeks and be retest for celiac serum antibodies...
  25. trents
    https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ Read the sections, "The First Step: tTG-IGA" and "Other Tests." If you were not eating normal amounts of gluten for 10 days leading up to the serology tests then the results may not be valid. Again, can you post the specific tests, their numbers and the reference ranges for...
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