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Awhile back I inquired if anyone had experienced positive biopsy with negative blood work (and IgA deficiency is not a factor).  

I had 24 replies, 3 asking for a summary and 21 were cases of positive biopsy with negative blood tests, so apparently this does happen sometimes.  Some specifically mentioned not being IgA deficient, so it wasn’t just a matter of only one useless blood test being tried.
 
A few notable replies:
 
--My husband was diagnosed with Celiac Disease in 2006 with a biopsy of the small intestine. Prior to this diagnosis his blood test was negative for Celiac Disease. After over six years of extreme illness, heart disease, gallbladder, appendix, diabetes and nearly dying three times all within this time frame, finally a doctor listened to us and did the biopsy. The worst ulcerated stomach he had seen in over 2,000 scopes!! Yes, it is possible to have Celiac disease and have it masked with the above symptoms, test
negative with blood work and positive with a biopsy. I would always recommend the biopsy if you suspect CD.
 
--Yes absolutely.  Gluten breaks down into more pieces than they have tests for at this time.  Also most people do NOT have villi damage but the damage targets some other tissue besides the villi.  So many more people have serious autoimmune disease etc., from the gluten syndrome who hve fine healthy villi.  The damage is somewhere else.  The gliading and tTG tests and the vili biopsy only catch a small subset of the gluten syndrome. But that is where doctors found the damage first and the misconception that villi must be damaged is a misleading many very ill patients.  


--Damage can start in the GI tract & progress to become a systemic autoimmune disorder--positive blood tests.  Catch the GI reaction early & blood tests will bwe negative. Studies have found that blood tests are more likely to be positive if damage is in the moderate to severe range.

Or, it can start in the immune system and GI damage can come later.  About 25 percents of the kids in our group have type 1 diabetes & were caught w/ routine blood screenings at Children's Hospital (Milwaukee WI)   Lots of the kids have negative biopsies when dx but years of follow up on other kids has shown that GI damage will be there within 2 years of a positive blood test.

There an chart for diagnosing celiac online at http://www.aafp.org/afp/20021215/2259.html  that shows both.  If there are symtoms & other evidence (family history or related autoimmune disorder), biopsy should be done to check for GI damage, which is the Gold Standard! 

Interestingly, my grandaughter was dx at 20 months after 6 months of failure to thrive after a GI bug.  Her blood tests were normal (not unusual as a young child may not be making adequate antibodies) as was the height of the villi...The biopsy did should increased epithelial lymphocytes (too many purple spots of the slide) which was a very eary indicator of celiac disease. Because she 3rd generation celiac, they went straight to biopsy & drew blood for the antibody test while she was under anesthesia.   The accuracy of the diagosis was proved correct by the 4 pounds & inch & a half she's grown in the 6 months since going g.f.! 

Check out www.theglutensyndrome.net.  That is the focus of the website.  Pay particular attention to the medical diagrams.
 
--Several folks gave links that talk about the false negatives on the blood tests.
 
http://www.medicinenet.com/script/main/art.asp?articlekey=78186 

http://www.celiac.com/articles/57/1/Interpretation-of-Celiac-Disease-Blood-Test-Results/Page1.html 

http://celiaccenter.ucsd.edu/aboutcdadults.shtml 

http://celiacdisease.about.com/od/diagnosingceliacdisease/a/celiacdiagnosis.htm
 
http://jccglutenfree.googlepages.com/limitationsofbloodtestsandbiopsy
 
--There is another disease that mimics celiac - hypogammaglobulinemic sprue or CVID sprue (both are the same thing, just different names). Frequently, biopsies will be positive, but serology will be negative. CVID sprue is often found in people who have a primary immunodeficiency disease (PIDD).

I thought I had CD (negative biopsy and serology, but GF diet helped GI symptoms) for 7 years. Last year, someone on this listserv wrote me and asked if I'd been to see an immunologist. My PCP sent me to one and I was diagnosed with a genetic immunodeficiency disease in October 2007. The treatment for CVID sprue is a GF diet, but also IgG infusions to boost the immune system, support lung function and reduce inflammation from autoimmune diseases.

I'm sure there are any number of reasons why your tests came out as they did, but you might consider seeing an immunologist to be certain that your immune system is functioning properly. Most CVID patients lose lung function and are extremely susceptible to autoimmune diseases, so it's important to know.

Many thanks to all who replied,
Dawn

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