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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Positive Blood Test - Negative Biopsy
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10 posts in this topic

I recently had the Prometheus Celiac Serology test done. My DGP IGA was 142 all others were in normal range. I then had an EGD & Colonoscopy. I received a call this morning from the Physicians Assistant that said, "everything came back good". Is there any way the blood test can give you a false positive? I have already started eating gluten free over the past few days after completing my tests,and have emailed companies to find out if my beauty/personal care products contain gluten, but want to make certain I am not making a drastic lifestyle change that is not necessary.

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My understanding is that the DGP IgA is highly specific to celiac disease, and that a false positive is very rare.

Unfortunately, false negatives on the biopsy can occur for a number of reasons. A few:

Damage to the villi is patchy, and an affected part was not sampled (perhaps too few samples were taken;

The disease is in the early stages, and damage is not yet detectable;

The pathologist is not familiar with celiac disease and failed to recognize the damage on the slide.

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How many specimens did they take? not altogether, but of your small Intestine? It is possible they missed the abnormal parts..The DGP is quiet specific for celiac and not overly sensitive, so for it to be positive, wellll....welcome to the club!

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Could it be that you have Latent Celiac Sprue? Positive blood test but no symptoms and no signs of damage to the intestines? I would inquire about that.

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Celiac expert Dr. Alessio Fasano has written articles on this topic, and he believes that the endoscopic biopsy should no longer be considered the Gold Standard for diagnosing celiac disease based on the facts set forth by Peter above. The chances that damage can be overlooked are so high, this test can no longer be relied on. Dr. Fasano states that if you have positive bloodwork, have symptoms after eating gluten, those symptoms resolve on a gluten-free diet and then return upon resumption of a gluten-containing diet, you have celiac disease. You have made the correct changes to your life, and you will not regret making them. May you have a very healthy and happy life!

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I have a positive IGA TTG (rest of the panel negative), negative biopsy (should be noted it was done 4 weeks after going gluten free), positive for both main genes, and positive reaction toward the diet. We're all different! :)

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Celiac expert Dr. Alessio Fasano has written articles on this topic, and he believes that the endoscopic biopsy should no longer be considered the Gold Standard for diagnosing celiac disease based on the facts set forth by Peter above. The chances that damage can be overlooked are so high, this test can no longer be relied on. Dr. Fasano states that if you have positive bloodwork, have symptoms after eating gluten, those symptoms resolve on a gluten-free diet and then return upon resumption of a gluten-containing diet, you have celiac disease. You have made the correct changes to your life, and you will not regret making them. May you have a very healthy and happy life!

Thank you so much! I have been gluten free for 1 week and have already started to feel better. It is very frustrating because my biopsy report says R/O Sprue. My fiancee says this means "rule out". They took 3 biopsies and have no other explanation of my previous symptoms of nausea, vomiting, abdominal pain, body aches. I am very grateful for the information on this website...otherwise I might have actually listened to my GI doctor and thought it ok to continue to eat gluten.

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My understanding is that the DGP IgA is highly specific to celiac disease, and that a false positive is very rare.

Unfortunately, false negatives on the biopsy can occur for a number of reasons. A few:

Damage to the villi is patchy, and an affected part was not sampled (perhaps too few samples were taken;

The disease is in the early stages, and damage is not yet detectable;

The pathologist is not familiar with celiac disease and failed to recognize the damage on the slide.

Thank you for your response. It really means a lot to have the validation of others that have struggled with getting an inaccurate diagnosis. I have been gluten free for 1 week and other than not being able to rely on my go to chicken sandwich when traveling and an awkward dinner with friends it hasnt been that hard.

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How many specimens did they take? not altogether, but of your small Intestine? It is possible they missed the abnormal parts..The DGP is quiet specific for celiac and not overly sensitive, so for it to be positive, wellll....welcome to the club!

Received the results today. They did 3 biopsies of small intestine and several in other spots. It states R/O Sprue. I have been gluten free for 1 week and I am already starting to feel better. As my daughter said, if you have to have a disease at least it is one where you can still have wine :) Such great encouraging people on this website! Very grateful to have such a great resource

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Received the results today. They did 3 biopsies of small intestine and several in other spots. It states R/O Sprue. I have been gluten free for 1 week and I am already starting to feel better. As my daughter said, if you have to have a disease at least it is one where you can still have wine :) Such great encouraging people on this website! Very grateful to have such a great resource

What did the actual biopsy results say. Rule out is really just a reason to do the procedure. The pathologist may not want to say it is Celiac. there should be descriptions of what was seen when looking at the biopsies.

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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