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RMJ

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Everything posted by RMJ

  1. RMJ
    Here is what the FDA says about use of allergenic ingredients as processing aids (from that Compliance Policy Guide). They must be declared. FDA’s regulations (21 CFR 101.100(a)(3)), provide that incidental additives, such as processing aids, which are present in a food at insignificant levels and that do not have a technical or functional effect i...
  2. RMJ
    The way the information is presented it looks like the definitions of starch etc are from the FDA Compliance Policy Guide, but they are not. Here is the FDA guide: Open Original Shared Link Without knowing the actual source of the definitions I can't evaluate their accuracy.
  3. RMJ
    That value/score is a very, very strange way of reporting total IgA!
  4. RMJ
    I'm not sure what you mean by score, but her testing at the Mayo Clinic looks like what they describe in the Mayo Clinic link I included. The posted results are in reverse order of the actual testing. Testing started with total IgA (for some strange reason labeled "Celiac disease, cascade" and does not include units). It was within the normal range...
  5. RMJ
    I second the request for a falafel recipe!
  6. RMJ
    Cascade or reflex testing is where they don't do all the tests at once, but based on initial results the testing may be continued. It happens in the lab, it is not a case of going back to the doctor for the decision to continue. For example, when I am tested the lab only does the EMA if the Ttg is positive. The test labeled cascade looks like it...
  7. RMJ
    I had high antibodies, no symptoms, and a positive biopsy. I am glad you are getting a second opinion. I'm glad celiac can be treated (gluten free diet) without a doctor's prescription, since so many doctors do a poor job diagnosing it.
  8. RMJ
    Do you know why you were tested for the infectious disease antibodies? Those don't seem like routine tests. Sometimes, for some of those, a high IgG antibody level is good meaning you are immune from vaccination or exposure. Did they also measure IgM antibodies for any of those? I'd keep after the doctor who ordered the tests to explain it to you...
  9. RMJ
    One does not need to have anemia to have celiac! It sounds like you've gone gluten free? Perhaps they would be willing to retest you in six months to see if the antibody level goes down on a gluten free diet. Be sure to use the same lab for the retest so the comparison is valid.
  10. RMJ
    I'm glad you have a diagnosis. Fibromyalgia is recognized by western medicine, FDA has even approved several drugs for its treatment. This article from the NIH is interesting, saying that not all doctors are familiar with it ( those are probably the ones who minimize it). I hope your health improves now that you know what you have and can begin to do...
  11. RMJ
    Many celiacs can eat 10- 20 mg of gluten per day (10-20 ppm in one kilogram of food) without adverse effects. That is roughly equivalent to 1/16-1/8 teaspoon flour. More than a trace, but still a small amount. Some of us cannot handle that amount.
  12. RMJ
    I am so glad you have an answer and that she is responding to the gluten free diet
  13. RMJ
    The three tests you list are all in the normal ranges. The TTG IgA test does not look for IgA deficiency, it looks for IgA only against TTG. The tests you list do not show whether or not you are IgA deficient.
  14. RMJ
    I would want the DGP also. My TTG started out high and now is just barely normal; my DGP is lower than at first but still high and per an endoscopy I still have some villi damage.
  15. RMJ
    When a lab test measures something like total IgA antibody or cholesterol, the result is a real unit - a weight per a volume. Reference ranges may differ a little between laboratories but actual patient results can be compared from one lab to another. For celiac specific antibody tests such as TTG, the units are completely arbitrary and assigned by...
  16. RMJ
    During hard cheese manufacture most of the lactose is broken down into its parts, galactose and glucose. These do not cause the same digestive problems as lactose.
  17. RMJ
    My doctor is at a university hospital and has a very good endoscope with great magnification. She was able to see the blunted villi during the endoscopy, confirmed by the biopsy.
  18. RMJ
    If the link works it should be a list of dedicated gluten free facilities. Open Original Shared Link
  19. RMJ
    I just saw a paper on this today: Open Original Shared Link
  20. RMJ
    I'll answer question 2. Linear. Linearity is one of the things FDA looks at with such tests prior to approval.
  21. RMJ
    Here is the report of my biopsy, although my biopsy was after 3 years of trying to be gluten free. Combined with serology I was diagnosed as celiac. "Duodenal mucosa with patchy mild increase in intraepithelial lymphocytes and focal mild villous blunting."
  22. RMJ
    I could not have a biopsy when I first got my blood test results (due to an unrelated medical/doctor issue). But I was high positive on EMA, TTG IgA and IgG and DGP IgA and IgG. I am thin but did not have GI symptoms - I was tested due to migraines. I was not diagnosed with celiac, the official diagnosis was abnormal celiac panel. Doctors left it up...
  23. RMJ
    This seems odd. No SIGNIFICANT villous blunting. Was there mild villous blunting? Increased intraepithelial lymphocytes?
  24. RMJ
    I was in the hospital once for six days and had nothing except the glucose in the iv solution- and I survived. Since it is only for two weeks I wouldn't worry about a balanced diet, or getting every nutrient every day. Some celiacs react to oats, but lots of steamed rice would be good for getting calories. If you took nuts that would add both fat and...
  25. RMJ
    It seems strange to be tested for celiac or gluten sensitivity if you have no symptoms, unless you have a close relative with celiac. It will be interesting to see what sort of test was actually performed.
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