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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

RMJ

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  1. True allergies are usually to proteins. Lecithin would have a lot less protein than soy flour. Does your daughter have a diagnosed soy allergy?
  2. I hope you get clearcut results.
  3. I used to work in the diagnostics industry. It is highly likely that it is the marketing department, not the white coat wearers, who like the combined testing, allowing their product to be different from the competition.
  4. Were they exactly the same tests? Could the older one be gliadin and the newer one deamidated gliadin peptides?
  5. 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 in the finished food are exempt from ingredient declaration. Some manufacturers have asserted to FDA that some allergens that are used as processing aids qualify for this exemption. FDA, however, has never considered food allergens eligible for this exemption. Evidence indicates that some food allergens can cause serious reactions in sensitive individuals upon ingestion of very small amounts; therefore, the presence of an allergen must be declared in accordance with 21 CFR 101.4. The exemption under 21 CFR 101.100(a)(3) does not apply to allergenic ingredients.
  6. 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: https://www.fda.gov/ICECI/ComplianceManuals/CompliancePolicyGuidanceManual/ucm074552.htm Without knowing the actual source of the definitions I can't evaluate their accuracy.
  7. That value/score is a very, very strange way of reporting total IgA!
  8. 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 listed in the Mayo link under "Reference Testing" so testing continued with TTG IgA. Jenna3, the total IgA is to ensure that the results of the rest of the IgA tests are valid. It is looking at total IgA antibody, not celiac antibodies. TTG IgA was a weak positive so testing continued with EMA IgA and Gliadin IgA which per the Mayo website is the deamidated gliadin peptides. It looks like there should be an EMA titer reported. Hope this helps.
  9. 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 has a total IgA range. Perhaps in this cascade they only continue with the IgA antibody tests if the person has a normal total IgA. http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/89201
  10. 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.
  11. 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.
  12. 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.
  13. 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 something for it. https://www.niams.nih.gov/health_info/fibromyalgia/#c
  14. 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.