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trents

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Latest Celiac Disease News & Research:

Everything posted by trents

  1. trents
    Welcome to the forum, NancyK! First, the doctor who told you that you don't have to be strictly gluten free because you don't have GI symptoms at your age gave you very incorrect and dangerous advice. This is another example of many, many we see here on the forum of blatant ignorance on the part of most primary care physicians with regard to celiac disease...
  2. trents
    Well if each ingredient is tested to be gluten free, even if each one is tested by the shipment batch, that's even better but not necessary as what counts is the final product meeting the 20 ppm standard. And there is no law that states they have to label it gluten free, even if it is. Have you tried the product yourself? Do you have hard evidence that it...
  3. trents
    The article states the company checks for meeting gluten free standards by the batch, meaning each production run, not each individual container of the product. That would be an unrealistic expectation. Each ingredient doesn't have to be checked as long as the total formulation meets the 20 ppm standard. Seems like the company has been pretty transparent...
  4. trents
    @WandaC, that seems like reasonable advice except for the part about waiting to be screened until "until we have issues". I take that to mean you are saying if you start having symptoms. Perhaps the main point of the research article is that you don't want to wait until you start having symptoms because by then the damage to the small bowel lining and other...
  5. trents
    @Sof, If you face gets puff when eating oats, that sounds like an allergic reaction to me, bordering on anaphylaxis.
  6. trents
    Thanks for sharing, Amy CH. This study concurs with the findings of another study done released about a year ago, done by the Mayo Clinic, that found 44% of first degree relatives of those who had been diagnosed with celiac disease had celiac disease themselves. Most of them didn't have a clue because they were largely asymptomatic.
  7. trents
    I am a celiac but I find that not many non medical people (such as restaurant personnel) have a clue what "celiac" is so I combine the two into, "I have gluten intolerant celiac disease" to cover all the bases.
  8. trents
    An endoscopy with biopsy is an outpatient procedure, often with sedation. Additional antibody testing would only require a simple blood draw. Either way, continue to consume gluten until the day of the test.
  9. trents
    Welcome to the forum, Jnapier! Was that test run which the doctor used to declare you had celiac disease the tTG-IGA? It is the most common antibody blood test ordered by doctors looking for celiac disease. It is possible the "other test" your doctor wants ordered are additional blood antibody tests but it is also possible he wants to do an endoscopy...
  10. trents
    Let me ask you, do you think you would feel less strongly about this if you had been diagnosed as a celiac instead of NCGS? At least with celiac (disease?) there are some genes involved and some tests that go in your medical record to prove it's not all in your head.
  11. trents
    Seems to me you are confusing some doctors' denial that gluten intolerance exists with the question of whether it is a normal biological variant or a disease.
  12. trents
    Some healthcare system guidelines, like those in the UK, will grant a diagnosis of celaic disease without the endoscopy/biopsy if the tTG-IGA antibody test score is 10x normal or greater. If the tTG-IGA test scores are postive but less than 10x normal, then it can take months to schedule an endoscopy/biopsy. If you live in the UK or another part of the world...
  13. trents
    Welcome to the forum, Lisa Jo3! You have only had one phase out of two phases of testing that is typically done to diagnose celiac disease. If your blood test numbers are positive, the physician will likely order an endoscopy with biopsy of the small bowel lining to check for the damage to the villi typically caused by celiac disease. This is the gold...
  14. trents
    Has the rash been biopsied and confirmed to be DH?
  15. trents
    Gary, I certainly wouldn't be thinking cancer at this point. Viral infections can also cause swollen lymph nodes. Tell us about yourself. Have you been officially diagnosed with either celiac disease or NCGS (Non Celiac Gluten Sensitivity)? Are you diligently pursuing gluten free eating? By the way, welcome to the forum!
  16. trents
    https://www.ultimateglutenfree.com/local-celiac-support-groups/ Don't know if this is still going on, however. This might be a resource that would know if there are celiac support groups currently active in the Chicago area: https://celiac.org/eat-gluten-free/gluten-free-services/celiacdiseasecenterchicago/
  17. trents
    You might also research SIBO (Small Intestinal Bacterial Overgrowth). The symptoms you describe are found with SIBO and SIBO is common among those with gluten issues.
  18. trents
    No, I don't have any recommendations about butter substitutes. I don't use them. I don't seem to have a problem with dairy. I wish you well as you seek to identify foods that may be causing problems in addition to gluten.
  19. trents
    The solution is the same for both celiac disease and NCGS. Namely, total avoidance of gluten. However, some people need an official diagnosis in order to keep to their gluten free diet and not rationalize ways to cheat. Also, in certain situations, like congregate care, an official dx may be necessary to make the case with the kitchen staff that you really...
  20. trents
    Marissa, have you actually been tested for celiac disease or are you assuming you don't have it but have gluten sensitivity instead? There are specific antibody tests that can be used to diagnose celiac disease. Before one can arrive at a diagnosis of NCGS, celiac disease must first be ruled out. They share many of the same symptoms but there presently...
  21. trents
    Marissa221, welcome to the forum! Have you been officially diagnosed with either celiac disease or NCGS (Non Celiac Gluten Sensitivity)? How long have you been practicing gluten free eating?
  22. trents
    Do the itchy areas on your knees and thighs ever take the form of little pimples with blisters? You may know this already but there is a skin condition known as dermatitis herpetiformis (DH) that some celaics develop and it is definitive for celiac disease. There is no other known cause.
  23. trents
    The tTG-IGA test, which is the most common celiac disease test ordered by doctors, will miss 80% of African Americans who actually do have celiac disease.
  24. trents
    Yes, H. Pylori and other gut infections such as SIBO are more common in the celiac population. If your insurance allows you to schedule an endoscopy/biopsy without referral, go ahead and do it. You can always cancel the appointment if you or your physician decide it isn't needed. But most likely, if your blood antibody tests are positive, you will be recommended...
  25. trents
    A high percentage of celiacs cannot tolerate dairy, either because of the lactose or the dairy protein casein. For those with casein intolerance, the deal is that the protein must be similar enough to gluten protein that it causes a similar autoimmune reaction. Those with lactose intolerance sometimes outgrow it after going gluten free for a significant period...
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