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Blood Testing


billy

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billy Rookie

how accurate are blood tests? i just had my second negative test in two years even though i've tested myself through trial and error over the past four with textbook symptoms (i do go see my first gi doc in two weeks). has anyone else had negative bloodwork with a positive biopsy? thanks, billy


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tarnalberry Community Regular

I had mostly negative bloodwork (only a positive anti-reticulin IgG), and no biopsy - just a positive dietary challenge. Blood testing is appearing (according to some recent articles) to be less reliable than the statistics show - and this appears to be particularly true for people who don't have much damage to the villi. It's appearing (from anecdotal and other evidence) that there is a sort of "subclinical" celiac disease that is more correctly defined as gluten intolerance, without the severe intestinal damage.

Jinxy'sMom Newbie

Hi Billy. The only blood tests I had that came back as positive were the IgG and IgA. All the others were neg. I decided not to pursue a biopsy at that point because I didn't have any symptoms. Lately I have developed what I believe is DH and I'm seeing my GP Friday for a referral to the GI and I'd like to have the endoscopy done.

Guest barbara3675

Hi there----I had a negative blood test and after reading a lot about Enterolab on these message boards decided to do their most comprehensive test which included gene testing. They got back to me in less than two weeks after I sent the kit back that they had sent me and I am gluten and casein intolerant. I would not have known this if I had relied on my doctor for information. I highly recommend this kind of testing. The results come via email and are pretty comprehensive. I had already been eating gluten-free, but now am eating cf too. I have a six year old granddaughter that has celiac disease and we know it is hereditary.....and now we know where she got it from, darn. I am going to be 60 soon, I probably have had this for a long time, but just got diagnosed as I didn't have the bad gut symptoms until recently. However, I did have some of the other ones which are: migraine headaches, depression and just last winter diagnosed with fibromyalgia/which is pain all over your body in the mucles, tendons, ligaments. I feel this is all leading up to the diagnosis of gluten intolerance now/it is all linked. '

Barbara

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    • lizzie42
    • RMJ
      The test result will never be shown as zero because the most negative the result can be reported as is less than the lowest amount the test can detect.  For example, you might see <2. What is the normal range for your daughter’s test?  Antibodies can hang around in the body for a while. Even if her result is not yet in the normal range, going from more than 100 to 9 in a few months is great! Good job, mom.
    • lizzie42
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    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
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