Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

RMJ

Advanced Members
 View Profile  See their activity

  • Posts

    1,543

  • Joined

  • Last visited

  • Days Won

    49

 Content Type 

Profiles

Forums

Events

Blogs

Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by RMJ

  1. RMJ
    Here is some information on SCS. It says they will prescribe a testing schedule, but doesn’t say how they determine the schedule. SCS gluten free certification overview This mentions auditor supervised testing: SCS certification
  2. RMJ
    Here is information about another certifying organization, NSF. If one scrolls to the bullets in the NSF Gluten-Free certification section, it looks like each lot is tested for gluten. Their limit is 15ppm, which is below FDA requirements but higher than some other certifying organizations. NSF
  3. RMJ
    My TTG IgA came down pretty quickly. The DGP IgA took a while to become normal and took me getting more and more strict about my gluten free diet since I don’t get obvious symptoms from gluten. When eating processed foods I started with foods with no gluten ingredients, then went to foods that were labeled gluten free, then foods that were certified gluten f...
  4. RMJ
    There isn’t much research on the use of IvIg for gluten ataxia, so it is fairly experimental at this point. The reason for not starting until celiac antibody levels are normal is because the IvIg could change the results of the antibody tests, not that your antibodies would interfere with the IvIg effects. If it were me I think I’d try to get my ...
  5. RMJ
    It has already been discussed in these forums that the GFCO certified products use step down testing, meaning that not every lot of product is tested for gluten. In some cases, after enough passing results, products only need to be tested once each quarter! Manufacturing facilities are supposed to be audited annually. GFCO Step down testing - see pages...
  6. RMJ
    It’s lucky that people with celiac disease can treat themselves, with a gluten free diet, since so many doctors don’t know what they’re doing when it comes to celiac disease. I hope you can get a clearcut diagnosis from the biopsy. If not, just go gluten free anyway and get rid of your symptoms yourself!
  7. RMJ
    Does it double in size during the rise? Or more? It should probably only double in size during the rise, then it should rise more during the first part of the bake. To the top of the tin might be too much depending on the size of your bread tin. Does the mix specify the size of the tin? One hour might be too long if your kitchen is warm.
  8. RMJ
    Could you be overproofing it, and then it collapses? There’s a wonderful Gluten Free Bread Home Bakers group on a social media site (not sure if I’m allowed to mention or link to it here?). They have a file of recipes. People post pictures of the inside of their bread to get advice.
  9. RMJ
    I’m glad you’re seeing improvement! I hope she gets better and better.
  10. RMJ
    Since a biopsy isn’t an option, I think both of us are suggesting you see if changing the amount of gluten you eat changes the antibody levels. Trents is suggesting you try eating more, I’m suggesting that you try eating less - especially if cutting gluten from your diet makes you feel better. If there is a correlation it indicates celiac disease.
  11. RMJ
    Trents and I are suggesting two different things. I suggested gluten free for six months to see if the results went down without gluten. For that you would not do a gluten challenge. If you want to see what the results would be if you ate more gluten you could start that gluten challenge that trents suggested right now.
  12. RMJ
    Can you get on a list to be called for an earlier procedure if someone else cancels theirs? In the meantime, you could enjoy eating all of your favorite gluten-containing foods, in case the diagnosis is celiac disease and you have to give them up after the endoscopy.
  13. RMJ
    Thank you for including the lab normal ranges! You could try going strictly gluten free for six months then repeat the blood tests. If the IgG tests that are now positive decrease on a gluten free diet it would indicate that gluten makes your body create autoantibodies that attack itself.
  14. RMJ
    I go to a specialist, but that seems to be the way the healthcare system I use works. The job of primary care seems to be to send people to specialists.
  15. RMJ
    I am also a silent celiac. I have to go by my annual blood tests for celiac antibodies to see if my diet is sufficiently gluten free. In order to keep the antibodies in the normal range I have to pretty much stick to certified gluten free foods if I eat processed foods.
  16. RMJ
    The best way to investigate the unexpected results would be at the laboratory that got those results. An accredited laboratory likely has a procedure for laboratory investigations which would involve reviewing how the tests were run, and possibly redoing tests on retain samples if procedures were not correct. Such an investigation takes time and dollars....
  17. RMJ
    Actually, in both cases they are criticizing the testing laboratory. A big issue they had with the Cheerios testing was that the company said they took 12 samples (good) but then mixed them together prior to testing such that if there were a slight hot spot it would be diluted and possibly not detected. Mixing samples like that is NOT considered good...
  18. RMJ
    Good for your doctor in ordering a complete celiac panel! Many just order TTG IgA. The four celiac tests are all normal, i.e. not indicating celiac disease (as long as you were eating gluten prior to the tests). I’m not sure why the lab said low total IgA was suspected, but even if the total IgA was low, the correct tests were done to account for that. ...
  19. RMJ
    Here is an update from Gluten Free Watchdog, indicating that the high results on at least one item may be false positive. I am a scientist and used to develop ELISAs, the type of test used. Non-specific binding such as is described can be a real problem with these tests, so this is a scientifically reasonable explanation. possibly false positive
  20. RMJ
    Per this article it is possible. Look under “Etiology.” Intestinal lymphangiectasia
  21. RMJ
    I hope you can find the help you need. Have you stopped eating oats and dairy?
  22. RMJ
    What sort of management and treatment are you looking for? The only treatment is a gluten free diet. You may get better support on this forum than from any doctor. My celiac specialist likes to see me once a year but just orders antibody tests and sent me to a dietician when I requested that.
  23. RMJ
    I’m not sure what you mean about using Mayo Clinic’s guidelines to put your TTG IgA as a weak positive. Results should be compared to the standard range of the lab doing the test, because different labs use different units. So per Quest, your TTG IgA is negative and IgG is positive and fairly high. It is great that your doctor ordered the full pan...
  24. RMJ
    Some blood tests are very specific for celiac disease. Without more information on exactly what blood test was run it is difficult to say what yours could indicate. I haven’t seen the terminology “level” used in describing celiac blood test results before. Were you seeing a dermatologist for a rash? Were they looking for dermatitis herpetiformis, whic...
  25. RMJ
    For an accurate diagnosis you should continue to eat gluten until you have the endoscopy. How long have you been gluten free?
×
×
  • Create New...