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Blood Testing
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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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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.

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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.

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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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    • I am sorry that you are sick!   Unfortunately, all celiac testing requires you to be on gluten.  😔.   Testing is usually not over until you get an actual diagnosis, but it appears that you may very well have celiac disease.    Here is more information: http://www.cureceliacdisease.org/screening/ http://theceliacmd.com/2015/06/six-reasons-to-test-for-celiac-disease-before-starting-a-gluten-free-diet-3/ in the meantime, you can eliminate dairy products temporarily.  It may provide some relief.  
    • Karen, the iodine test was a test for DH used in the 'olden' days. Iodine would be swabbed onto a spot and then it would be covered with a bandage. If someone had DH the iodined area would break out in lesions. I don't know how but we do know iodine can activate the antibodies. That is why some of us with DH have to avoid iodine in foods until the antibodies have cleared the dermis. OP, if you haven't been tested for celiac you should be and if you have active lesions a biopsy done next to a lesion by a DH knowledgable dermatologist may help in diagnosis.
    • The gluten-free diet (GFD) is the only validated treatment for celiac disease (celiac disease), but despite strict adherence, complete mucosal recovery is rarely ... View the full article
    • What's an " iodine test"?  Haven't heard doctors doing that to diagnose DH.
    • Hello! I've just been given my blood results and told they are highly suggestive of coeliacs but will have to wait till next month to see the gastroenterologist and who knows how much longer for a biopsy. My igA, igG and tissuetrans igA were all over 250 and tissuetrans igG was the only one that was normal. These results don't mean much to me yet but I'm told they are very high. I'm now quite fearful of how much damage I've gone to myself. I've had stomach problems for 25 years (just turned 40) and have often steered clear of too much bread and pasta for how bloated it made me feel but the symptoms were always vague and inconsistent so I kept eating. I had a couple of boats of gastro in the past few months (thanks kids) which I took a lot longer than normal to recover from which looking back may have been related. Then last Friday I had a blowout with wine, cheese, crackers, pizza and chocolate cake. I'm sure I've probably had blowouts like that before but I have never felt so sick before and am still slowly recovering. This is what finally prompted me to go back to my GP after being fobbed off so many times over the years. So I guess my question and my concern is whether there is still  chance of a false positive with levels like this? I worry what else it might be if not coeliac. I'm also worried that I may have done so much damage to myself that I will have several disorders going on! I'm also still recovering from last Friday and wondering when I'm going to feel better. I've stayed off gluten and dairy since my blood result a couple of days ago but feel like I'm allergic to food in general.  Thankyou!!    
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