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Positive Blood Test - Negative Biopsy


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9 replies to this topic

#1 Luci

 
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Posted 19 October 2012 - 07:40 AM

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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#2 psawyer

 
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Posted 19 October 2012 - 08:13 AM

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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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#3 frieze

 
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Posted 19 October 2012 - 08:13 AM

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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#4 Skysmom03

 
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Posted 19 October 2012 - 09:36 AM

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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#5 rosetapper23

 
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Posted 19 October 2012 - 10:12 AM

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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#6 shadowicewolf

 
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Posted 19 October 2012 - 02:16 PM

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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#7 Luci

 
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Posted 22 October 2012 - 02:01 PM

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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#8 Luci

 
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Posted 22 October 2012 - 02:06 PM

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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#9 Luci

 
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Posted 22 October 2012 - 02:14 PM

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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#10 kareng

 
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Posted 22 October 2012 - 02:30 PM

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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