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trents

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Everything posted by trents

  1. trents
    Welcome to the forum, pawbearbear! Ambiguity with regard to diagnosis has a constant presence on this forum with regard to new forum participants. You are certainly not alone. Often it is due to physicians failing to explain to their patients being tested for celaic disease that it is necessary to be consuming regular amounts of gluten for weeks to months...
  2. trents
    The connection between deep sleep and gluten consumption sounds like an opiod effect, doesn't it? So, you did not answer my question about other symptoms normally connected with gluten sensitivity/celiac disease. You allude to "common side effects" but do not elaborate. What I am wondering is what led you to investigate the possibility of gluten sensitivity...
  3. trents
    Welcome to the forum, Datsanne! Did you double post this? I take it since you are self-diagnosed that you do not know whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Correct? What symptoms did regular gluten consumption produce for you? What is not clear to me is whether the bed wetting occurs regularly or only when...
  4. trents
    "As far as the neurological issues go, are those usually completely healed after a long period of no gluten, or not?" Not necessarily. Sometimes there is complete healing but often there is improvement but not complete healing. With neurological problems it is very important to include gluten-free high potency B-complex, generous amounts of D3 (up to...
  5. trents
    There is no test for NCGS (Non Celiac Gluten Sensitivity) and it shares many of the same symptoms with celiac disease. You must first get tested to rule out celiac disease. Some experts consider NCGS to be a possible precursor to celiac disease. We know much more about celiac disease than we do about NCGS and the exact immunes system pathway engaged by NCGS...
  6. trents
    Plumbago makes a good point. We occasionally get forum participants who get positive tests either in the antibody testing or the biopsy, but not both for whatever reason. Two testing methods gives you more data whereas with only one, something might be missed. But if you are one of those people who get intolerably sick when going back on gluten and you have...
  7. trents
    If you can find someone who will do it, yes, I would skip the antibody tests and go straight for the biopsy. We wouldn't necessarily recommend a biopsy if your antibody tests were strongly positive but your physician likely would. You only have to be on gluten for two weeks for the biopsy so that's another advantage.
  8. trents
    I would suggest getting more than the tTG-IGA test ordered. It misses 20% of those of white European decent and a recent study showed it misses 80% of blacks with celiac disease (confirmed by biopsy in both race scenarios). The extra tests can often catch those who don't test positive on the tTG-IGA. But yes, the biopsy is more reliable.
  9. trents
    This is what you will run into anytime you try to circumvent health insurance contracts with an offer to pay private. I think you will find that any medical establishment that contracts with third party payers, either the government or managed care, will not accept private money. That may be controlled by contractual agreements or by federal/state regulations...
  10. trents
  11. trents
    I believe your three day interruption will not materially affect the outcome of testing. Just don't go gluten-free any longer right now until all testing is complete. I would ask the physician to run at least: 1. Total IGA, 2. tTG-IGA and 3. Deamidated gliadin peptide (DGP IgA and IgG). The EMA test would be nice to have as well but it is an expensive...
  12. trents
    That looks like a good option if you only want to check for celiac genes. The way they have laid it out in table form is very simple with the last column on the right being what you really want to know. It doesn't have excessive information that can be confusing.
  13. trents
    The Mayo Clinic guidelines for a pretest gluten challenge leading up to a serum antibody test are the daily consumption of two slices of wheat bread (or the equivalent) for 6-8 weeks and for the endoscoy/biopsy the same amount of gluten for two weeks. Since you have only been attempting the gluten free diet for a few days, now would be the time to put that...
  14. trents
    Even better is a nutritionist who is themself a celiac or has a family member who is.
  15. trents
    Dale, I understand that in the UK there is some kind of government subsidy to help offset the extra cost of gluten free food if you have an official diagnosis of celiac disease. Other than that, the antidote is the same for both NCGS and celiac disease, namely, adopting a gluten free diet for life.
  16. trents
    Yes, but then there is the hotly debated question of whether or not the distillation process eliminates the gluten.
  17. trents
    Thanks for the update. A very unusual set of circumstances and there would seem to be a real challenge ahead for the two of you. I am sure you have thought to yourselves that you wish the T-cell lymphoma had been caught earlier. I mean, how long has this been going on? Please keep us posted. There will be those on the forum who will lift your wife up in prayer...
  18. trents
    Digestive enzymes should not affect your antibody testing. EMA is a valuable test but is an expensive one. It is not considered very sensitive but it is very specific for celiac disease. So, if you test positive for this one it pretty much removes any doubt that you have celiac disease. It is always better to get a complete celiac panel done with...
  19. trents
    No, I think it's the same. Yes it is.
  20. trents
    Yes it is. Yes it is.
  21. trents
    Welcome to the forum, Jamie678! Many celiacs, like you described yourself three years ago, have few or no symptoms in the beginning. We call them "silent" celiacs. That usually changes as the the villi that line the small bowel become more damaged. Also, gluten is literally addicting and many experience withdrawal when trying to eliminate it from...
  22. trents
    Welcome to the forum, Traci! I would suggest contacting the company that makes them and ask that question. They may ask you for UPC number and lot number on the package. A question like this has several facets: 1. Has gluten been purposely included in the product formulation? In this case it apparently has not as there is no mention of gluten...
  23. trents
    You could also be reacting to some other ingredient in the premix.
  24. trents
    Don't eat the food brought to office parties. Seriously, I think you have it covered. I don't know what your work setting is but when I was in my working years, the biggest challenge was trying to eat gluten free at meetings and celebrations in the corporate environment. By the way, welcome to the forum!
  25. trents
    Welcome to the forum, Dale! Yes, despite negative blood antibody tests, you still could have celiac disease. 20% of whites and 80% of blacks who test positive through biopsy have a negative tTG-IGA score. Can you be more specific about what antibody tests were run by the doctor? There are a number of tests that can be run to detect celiac disease but...
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