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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
celiac does not produce the gluten antibodies. 2 of my children have gluten antibodies, yet (according to the specialist) do not have celiac disease. your plasma cells (derived from B lymphocytes) make antibodies to certain foods. IF it attacks the intestines, it is called celiac disease. if it attacks other organs, it's called "non celiac gluten sensitivity".
i do not have a link for the 70% thing i mentioned earlier, read it somewhere. sorry i cannot back that up.
there are many tests done around the world that are not done here in america. there are many tests done here in america that doctors do not recognize. it does not mean it's not valuable. my daughter had an asthma attack everytime she ate dairy. specialist said she was not allergic to dairy, so i should give it to her. so just because american doctors don't recognize other reasons... then they don't exist? sorry, i don't buy that. stool testing is very sensitive, it's testing "right at the source", so to speak. if you have something going on in your intestines, your feces will reflect that.
we are just going to have to accept that we have a difference in opinion. doctors are not the almighty, in my book. there have been MANY instances in my life where i have done my own research, done my own testing, and healed myself, as well as my children, because doctors didn't want to listen (even my daughter's facial tics!). they only know what they are taught in medical school, and what their governing bodies tell them. (unless, because you are the board moderator, you tell me that i'm not allowed to mention any other testing than what is approved by the AMA; in which case, i will take my leave.)
ncgi is quite serious, as the gluten antibodies can attack other organs in the body.
so, we got the results of jeanna's blood tests back. her ttg igg after 2 weeks on gluten was a weak positive (9), but after 4 more weeks, was a positive (12). so the doctor said that she has celiac disease. remember that she was about 90% glutenfree for 4 1/2 yr prior to the testing. i got the stool testing done, as about 70% of full-blown celiac's antibodies don't show up in blood, while almost 100% show up in stool. and many get missed in biopsy testing, only to continue consuming gluten, and then show up with it later after many more years of tissue damage.
i know that she cannot eat gluten. after she did the 8wk trial, her leg muscles felt horrible!!! very shaky, weak, fatigued, painful. it took her 3 days off of gluten just to get out of bed without crying. it was horrible! plus she felt "funny" in her head, melting down, etc. SO glad she's off of it!!!
wait! i just looked at my daughter's results and reference ranges, and noticed that you had a 4 on the ttg iga? the reference range is 0-3. ttg is an enzyme found IN your intestinal cells. when gluten antibodies attack your intestines, the ttg comes out, and you form antibodies against it. those ttg antibodies can then go through your blood and attack other organs, like i explained above.
and please remember that if you have the biopsy, and it's negative, that just means that they didn't find it, or it's subclinical (can't see it YET in the microscope!) i would strongly suggest you go on EnteroLab's website and read their info!
my daughter tested negative on the whole panel, except tTG IgG. she was a mild positive (9) after 2 weeks on gluten, and a positive (12) after 6 more weeks on gluten, so the doctor said he thinks she has celiac disease.
i read that 70% of full-blown celiacs will test negative on the panel, but almost 100% test positive on stool testing from EnteroLab. so, we did that. we had the gluten sensitivity panel run (checks for antibodies, ttg- which tests for tissue damage, and malabsorption).
you have gluten antibodies, which means you may or may not have celiac disease. but regardless if you do or don't, you DO have antibodies, which means other organs in your body could be attacked by the antibodies (pancreas, which you could end up with diabetes, joints- rheumatoid arthritis, thyroid, etc.)
food allergies (IgE mediated) as well as food sensitivies (IgG mediated) can cause postnasal drip. dairy is very inflammatory, regardless if people have senstivies to it or not. my daughter got postnasal drip and then asthma from dairy. after i pulled it out of her diet for 1 yr, she can now eat it, in limited quantities.
they originally did the whole panel, and everything came out negative, with a total igA being normal. but, when i called the office yesterday, it seems they ordered the wrong test!!!!! they ordered the ttg igA, which was always negative. they were suppose to order the igG, to compare the results to last time! so i called the lab, told them about the mistake, and thank God, they had the blood still. they ran it today, should get the results back tomorrow or monday. also, i can't believe the doctor didn't catch his mistake! they actuallly told me to let her eat gluten for another month and check the test again!!!! imagine if she does have celiac, and the doctor told me to have her eat gluten for another month!!!!
btw, she had the flu on thanksgiving, and the test 2 weeks later. she gets facial tics and hand temors on gluten, and very bad muscle fatigue/pain/overall weirdness in her leg muscles when on gluten. so she's back to being glutenfree. thank God!
my daughter had a blood TTG of 9. (reference range was normal- 0-3, mild positive 4-9, positive 10.) this was after being on gluten for only 2 weeks (she's been about 80%gluten-free for the last 4 years). the pedi gi specialist said that he wanted to redo the test after a full 8 weeks on gluten to see if the numbers go up. if they do, she most likely has celiac disease. if the numbers stay the same or go down, she still MIGHT have celiac, but we don't definitly know. so, i just got the results back, and they are <2. wth?!!!!!!!!!!!!! why would they go DOWN?! why would she have been a 9 to begin with? ugh! any help would be really appreciated!!! btw, we got stool testing done from enterolab. results will be back within 3 weeks. i hear it's much more sensitive. i'm just so confused.
oh honey, that sounds horrible! if you had ttg, though, you already KNOW you have tissue damage... enough to create an autoimmune response within yourself, whereby your antibodies are attacking your intestines (and God knows what other body organs!) and i agree that it is not your fault they didn't sedate you correctly. and i agree with nvsmom... nobody needs to know the details!
kareng~ i want a secret decoder ring too!!! hehehe!!!
wow! thank you so much!!! i've never heard of the dcp test. must go look into this. i don't think it's part of the celiac panel that my pedi runs. darn! anyway, what are other causes of ttg igG being high? my oldest daughter has negative everything on the panel, but positive ttg IgG. since she has been very gluten-reduced for 3 years, and only ate gluten for 2-3 weeks before the test was run, the specialist wants her to to get retested for ttg igG in a couple weeks, so she would be on it for 2 months at that point. he said that if the test came back higher, she's almost certain to have celiac disease, but if it comes back the same or lower, then we still don't know. his opinion is that since we have the genetics for it, and she shows signs for gluten-sensitivty, she should just go gluten-free. i agree, but i also wanted the stool test done and he said no, that it's not necessary. i tried telling him that it's becoming the gold standard, that if we want to see what's going on in her intestines, we should look at her stool. he said no. i'm getting it done anyway, and payingout of pocket.
also, perhaps you, or someone else, can help me with a genetics question. my hubby is DQ8 heterozygous. me, and my 2 daughters are DQ2 heterozygous (HLA DQA1*05/DQB1*02). my son is "DQ2-, DQ8-" (which my doctor said that means he does not have DQ2 or DQ8). but on top of the paper it says "HLA DQA1*0201 detected". what is that allele?!