Do We Really Need Biopsies to Diagnose Celiac Disease?

My teenage daughter was diagnosed by a genetic test.

Good news!

My daughter was diagnosed in 2006 by colonoscopy. She has the blood test in 2005 and after a negative result on her blood test and suffering another six months until a colonoscopy was finally done. The GI specialist didn't even need to wait for biopsies because of the damage, but of course the biopsies were positive as well. I'm dubious about relying on blood work alone, at least in children. I´d hate to be the patient or the family member or a patient suffering who was told it was negative based on blood alone. We were told because she was vomiting and had diarrhea daily that they suspect the blood test was negative because so little was being absorbed in her system.

I was tested after a trip to Brazil pointed out to my doctor that I might be celiac. He did just the celiac test and I so conclusively "failed it" that he declared me celiac after 10 to 15 years of not knowing what was wrong with me. There is no question that I am celiac after so many symptoms and so many years of eating gluten free (about 9 years and counting).

I was also diagnosed by genetic testing. I did not know anything about celiac disease when I was young and having all kinds of stomach issues. I went gluten free because I thought maybe I had a sensitivity to wheat and felt so much better. I later found out about celiac disease and asked my doctor to test me for it and he refused, saying it was very rare and I had IBS which is common in women. I had genetic testing done many years later and all markers were positive, in fact the counselor I talked to said she had been in the field for over 30 years and had never seen anyone with positive markers end up NOT having celiac disease but my Dr. at the time said they would not diagnose me with celiac unless I went back on gluten for a month or so and then had a biopsy. I was not willing to do that because I had been so sick before on gluten that I could not work or do much of anything. It took over 15 years before I finally got properly diagnosed and found doctors that were educated and knowledgeable about the disease.

My blood tests were all negative, but the biopsy showed damage to the small intestine. Does this mean I don't have celiac disease?

I had the biopsy. The blood work was "borderline" yet I already had serious blunting. My concern is that it might get missed in some cases.

I was diagnosed by lab work. I have been gluten free since my diagnosis in 2011.

This would be great; I had a biopsy that didn't show celiac disease, because my physician had the test done after 3 months of gluten free diet! The advise was to skip the gluten free diet and come back for another biopsy after three months! After so many years with pain I just couldn't do that again. So now the physician doesn't believe me. But I am pain free!

I was not tested for celiac disease when I first went to a doctor - tested for a multitude of other things and all negative. Went 3 more years until seeking second opinion. Positive with endoscopy to confirm at which time 3 areas of metaphylasia (sp) were found. One year later on celiac diet, repeat scoping, all areas gone. Now having 3 year scoping as follow up. All pediatricians have this as part of grandchildren's family health history.

Excellent informative article. Am 75 and have had some scary episodes from anesthesia in the past. I will now no longer do the duodenal biopsy. Had unsymptomatic celiac diagnosed one year ago in a blood test.

I think that the biopsy is actually not as accurate as physicians would have us believe. In a lecture by Dr. Fasano I attended he admitted that celiac disease is "patchy" and the biopsy may not reach the affected area. If a blood test comes back positive the person has a problem with gluten regardless of the level of damage (Marsh score) and should not eat it.