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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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


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About gfb1

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  1. right on. positive is positive and negative is negative. there are no inbetweens. it is not unusual to be overwhelmed by the voluminous, and sometimes confliciting, information available (not to mention all the scams, hoaxes and greedy sob's out there). mostly, no matter how smart you are, evaluating all the information is a matter of 'context'. and most folks do not have the experience and/or training to evaluate/synthesize all the information. it is one of the huge values of this board -- lots of folks with years of experience dealing with what are,, sometimes, very individualized problems. it is certainly a daunting task when starting, but does, as noted before, get easier. hang in.
  2. again, sorry to be the harbinger of skepticism... but, acu-cell is a scam. while there are certainly examples of asymmetry in the body (and related physiology/biochemistry) -- their discussion of 'handedness' of receptors (as with their so-called 'cellular analysis') is hooey...
  3. i'm sure you'll get other replies; but, since i'm here... since you are on a gluten-free diet, it will be very difficult to get 'clinical correlation'. that means blood tests to determine the cause of the 'villous blunting'. lots of threads around here that talk about eating gluten until AFTER all testing. otherwise all tests (blood/biopsy/etc) are suspect for celiac diagnosis. as another thread somewhere over the last week or so has discussed, there are other disease states (besides celiac disease) that can cause villous blunting -- note the text in your report regarding 'malabsorption syndromes'. in the absence of any other information (e.g., what other diseases can be ruled out or what other blood tests you have had) it is impossible to diagnose any disease from a single biopsy/blood test.
  4. as others have said, your case is (sadly) not unusual. being a diedinthewoolwordparsingacademic, imho, i do disagree that you had a 'false negative'. blood tests just measure stuff in the blood, and there is a lower limit of detection. your body, health and wellbeing are much more sensitive to changes in 'state' than any blood test. however, it is exceedingly difficult to trust yourself to know you are, indeed, sick; when you get a printout saying that you are 'negative' or 'normal' (whatever that is...). in fact, most people feel lousy BEFORE blood tests actually become 'positive'. this is why you feel sick, THEN go to the doctor -- not blood test yourself every month to see if you are BECOMING sick....
  5. my wife has had to have parenteral iron (i.e., iron infusions) for the last 6.5 yrs to keep fe, ferritin, & hb levels up to normal. for some unknown reason, although she has been diagnosed as being celiac for ~10 yrs and her gi tract is apparently 'healed' - she has been unable to absorb iron normally. this may have had something to do with her having manganese poisoning due to intake of herbal supplements and vitamins around the same time (a very long story, i'm afraid), but has lasted well beyond the resolution of that issue. we have gotten the timing of her infusions to approx once every 6-8 wks. curiously, after moving out of state, it has been 9 wks since her last iron infusion, her blood levels are well within normal ranges, and our 'new' doc is suggesting waiting a few more weeks, then do a blood test to determine if the malabsorption issues have resolved themselves. i do NOT recommend this for everyone/anyone, as regular infusions carry significant risk (even in the doctors office). but we exhausted all other possibilities and infusions remained as 'the answer' (for her). as to whether this is celiac related, nutritional issue -- or something completely different -- i haven't a clue.
  6. just an aside, go to a REAL nutritionist. as in, a registered dietician (american dietetic association) or some other professional. there are a lot of scams out there (because there is little certification of who can call them a nutritionist...) if you see degrees/certificates/etc from these organizations -- run away. # American Health Sciences University, CO # National Institute for Nutritional Education, CO #The Upledger Institute, FL # The National Association of Nutritional Professionals # American Association of Nutritional Consultants
  7. i am not, as some have surmised, opposed to genetic testing. both as a human being AND as a geneticist, i think genetic testing will be extremely important. however, i AM opposed to HLA testing for the purposes of diagnosing diseases. HLA haplotypes are directly relevant to a variety of medical issues (tissue typing, being one). but, are of no more value than knowing your blood type, hair color or any of a myriad of other genetic markers. further, they draw attention (and, more importantly, money) away from the task of identifying the gene or sets of genes that directly influence diseases.
  8. MY COMMENTS IN CAPS: Here are ten facts you should know and remember about Celiac genetic testing. 1.Genetic testing can help determine your risk as well as your children's risk. NONSENSE. AT THIS POINT THE ONLY GENETIC TESTING THAT CAN BE DONE TAKES INTO ACCOUNT HLA HAPLOTYPES. YOU HAVE MORE GENETIC INFORMATION ABOUT RISK, IF YOU HAVE A PRIMARY RELATIVE WHO HAS BEEN DIAGNOSED WITH CELIAC DISEASE. 2.Celiac genetic tests can be done on blood or a mouth swab sample but your doctor may be unaware of the tests, not know how to order them, or know how to interpret the results. TRUE. ALTHOUGH, AT THIS POINT, I WOULD ARGUE YOU NEED TO GO TO A TRAINED GENETICIST OR GENETIC COUNSELOR TO GET A DECENT INTERPRETATION. THERE'S A LOT OF MISINFORMATION OUT THERE. 3.Genetic testing is not affected by diet. You can be eating gluten or on a gluten free diet. Blood tests for celiac disease antibodies, however, need to be done while eating gluten. They can become negative within a few weeks of restricting gluten so if you are going to get the diagnostic antibody blood tests don't begin a gluten free or restricted diet before being tested. TRUE, BUT IRRELEVANT. IF THERE WAS A 'GENE' FOR CELIAC DISEASE, THIS WOULD BE MEANINGFUL. SINCE THERE IS NOT, THE ONLY WAY TO OBTAIN AN ACCURATE DIAGNOSIS IS TO CONTINUE EATING GLUTEN AND HAVE THE CELIAC BLOOD PANEL PERFORMED. 4.Some insurance companies do not pay for the Celiac genetic test and almost all who do require pre-authorization first. The following diagnostic codes are helpful when requesting insurance coverage: 579.0 (Celiac disease); V18.59 (family history of GI disease); and/or V84.89 (genetic susceptibility to disease). TRUE. AND THERE IS GOOD REASON FOR THIS. THERE IS NO DIAGNOSTIC GENETIC TEST FOR CELIAC DISEASE THAT IS MORE ACCURATE THAN THE STANDARD CELIAC BLOOD PANEL. 5.Some laboratories do not perform the all of the necessary components of the test to completely exclude the possible genetic risk of Celiac disease and most don't test for or report the other gluten sensitive DQ patterns. Before you accept that have a negative test you need to know if your test included both the alpha and beta subunits of HLA DQ or did they just perform the beta typing. KIND OF TRUE, BUT SINCE THE 'NECESSARY COMPONENTS' ARE NOT DEFINITIVE, THERE IS CONSIDERABLE DEBATE ABOUT THEIR RELEVANCE. 6.In some rare individuals, especially some men, a negative genetic test may not exclude the possibility of celiac disease anymore than a negative blood test. Men more commonly have negative genetic tests and blood tests, especially older men with long-standing severe disease. WHO KNOWS WHAT THIS MEANS? I SUPPOSE IT MAY CONTAIN FACTUAL INFORMATION, BUT SINCE THE HLA-HAPLOTYPES ARE OF QUESTIONABLE VALUE
  9. another day of only one post... very busy (which means business is good!!) do not feel stupid or guilty. here's my (nonMD, though experienced in clinical labs) view of your post. #1 assuming that your reference ranges are correct; your IgG antigliadin is POSITIVE and was on the previous test as well. this should NOT HAPPEN. gliadin (a digestive product of gluten) should NOT be in anyone's blood stream. it gets there by eating gluten, having incomplete digestion of the gluten (non-celiacs break gliadin down into shorter or single amino acids), then having it cross the intestinal mucosa and into the blood. TTG is probably negative, as there hasn't been sufficient damage to the intestinal mucosa to release the TTG and then for your daughters body to react to it (by creating antibodies) #2 be careful about reading nuance into test values 'increasing' or 'decreasing'. while you are provided a 'number', that 'number' is not a TRUE value (even if it were, it would be a value at a given moment in time -- and blood levels fluctuate for lots of reasons). hence, you are provided a 'range' that it either high, normal or low. there is no way to interpret 'increasing' or 'decreasing'. suffice it to say, i would be very concerned about 2 positive IgG gliadin tests. enough to seriously consider going on a gluten free diet (unless, of course, if you and your doctor want to find positive TTG or EMA blood tests and then do an endoscopy -- all of which presuppose a certain level of intestinal damage and require consumption of gluten)
  10. another short day for posts... however, this one might actually be important... 23andMe -- one of the new 'personal' genomics companies -- is beginning to build a large-scale database of major human diseases for research. they are trying to incorporate a 'social network'-flavor to identifying important genetic diseases (obviously, one's where they can make $$$) and are (in their words) 'democratizing' that process. given the vast number of celiacs out there; this might be an opportunity to steer a bit of research our way. i've already written a brief email to their board noting the expected frequencies of celiac disease in the US (and the potential profits ....), the differing expectations based on race and geography and, most importantly, the inadequacy of the current MHC-haplotype testing. based on large scale interest and the probability of a small number of genes with large effect that are involved in the disease -- i also suggested that they should be able to reduce the current cost ($99) of participation dramatically. as they say in chicago, "vote early. vote often." https://www.23andme.com/researchrevolution/ at bare minimum for $99 you can find out your HLA-DQ2.5 type. further, they have been able to identify 3 fairly large 'blocks' of chromosomes that may contain the non-HLA genes that influence celiac. with more patient participation, they may be able to 'narrow' those blocks to identify the actual genes involved...
  11. whew. you (all) have been through a lot. not sure what your expectation of the 'genetic' test is?? also, are you paying for it out of pocket?? the genetic panel cannot diagnose celiac; and, as noted in the previous post, sometimes folks that lack the 'risky' MHC genes -- actually have celiac (or, at least, some form of gluten intolerance). btw -- all of your symptoms in the post are NOT primary symptoms of celiac disease. they certainly could be secondary symptoms -- but, in the absence of primary symptomology and all the previous negative testing for celiac, i'd be a bit skeptical. otoh -- going gluten free doesn't require additional tests or hospitalization and is cheap and easy.
  12. a bit busy this week; not much time to post... but, always enough time to get a link out there, especially for scams/quacks/pseudoscience. http://www.quackwatch.com/01QuackeryRelate...cs/candida.html The American Academy of Allergists and other reputable medical organizations have pointed out, candida can cause an occasional infection or allergy. But no one has shown it causes depression, mood swings or headaches. Further, no one has shown that any diet (inc. yeast- and sugar-free diets) relieve these symptoms. save your money.
  13. imho, 'puzzle' is the correct word. buried on p2 of the u.chicago celiac disease center publication: it certainly puzzles me.
  14. it depends on the test and your personal biology. your topic post says something about "anti tissue transglutaminase tests" -- is this the ONLY test or is it the entire celiac panel?? it is entirely possible, based on your diet (i.e., how much gluten you usually consume prior to being gluten-free), how long you've been having celiac-like symptoms, and the degree of intestinal damage -- for some blood tests that might have been positive, to be negative.