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RMJ

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

Everything posted by RMJ

  1. RMJ
    If a manufacturer labels some foods gluten free but not all, I do NOT eat the ones that aren’t labeled gluten free. Even if the ingredients look ok, it probably means that there is some chance of contamination somewhere, for example from shared equipment. I really appreciate it when manufacturers are this careful with their labeling! As t...
  2. RMJ
    I understand that evaluation of processes, procedures and raw materials is important. In the pharmaceutical industry where I worked for over 40 years there is a saying that one can’t test quality into a product at the end. However, I think any reasonable consumer would think that if a product is labeled as certified gluten free, that each lot of product w...
  3. RMJ
    That may be too extreme, it would probably keep companies from testing! Pharmaceutical companies don’t release their CoAs to anyone who asks.
  4. RMJ
    I’m beginning to think that gluten free certification is mainly marketing also. From what I can find online it is difficult to know how much testing is done.
  5. RMJ
    I used to develop products with the type of technology used in these tests. It is definitely possible to have false positives if there is not enough protein to stop non-specific binding. However, in this case that has certainly NOT been proven. It’s just one possibility. Contamination with gluten is the other possibility!
  6. RMJ
    I just looked at Labcorp, they sure have a number of different celiac panels! You’ve had the total IgA tested before so there isn’t much value in retesting that. You don’t have a deficiency. The panel you ordered for yourself is missing one important test, DGP- IgA. I would get a panel that included that (along with tTG-IgA, tTG-IgG and DGP-I...
  7. 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
  8. 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
  9. 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...
  10. 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 ...
  11. 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...
  12. 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!
  13. 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.
  14. 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.
  15. RMJ
    I’m glad you’re seeing improvement! I hope she gets better and better.
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. 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.
  21. 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.
  22. 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....
  23. 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...
  24. 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. ...
  25. 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
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