If you have just received serology (blood) test results that suggest you may have celiac disease,  your journey to finding out what has been ailing you or a loved one may be nearing an end.  This is a very GOOD thing! Many people go years without a celiac diagnosis and feel crummy that whole time.

The endoscope has a camera and can take photos during the procedure.  This is one the images from my daughter's biopsy in 2000.

The endoscope has a camera and can take photos during the procedure. This is one the images from my daughter’s celiac biopsy in 2000.

The final part in confirming celiac disease is yet to come for you: the endoscopy and biopsy of the small intestine.  This procedure at this time is considered the “gold standard” in diagnosing celiac disease.

The endoscopy is the part of the procedure where a tube (endoscope) is sent down your throat.  It has a camera and the physician can look at the stomach and small intestine as it moves through the area. The biopsy is the part where the doctor takes samples of your small intestine to confirm you indeed have celiac disease.

Before we move any further….I do need to add that you need to be on a gluten-containing diet to help aid in the diagnosis of celiac disease through biopsy.  If you go gluten free before the biopsy, you could have gut healing and a biopsy could incorrectly say you don’t have celiac.

What to Ask Before the Biopsy for Celiac

Here is one thing that researchers and doctors made very clear to the audience at the International Celiac Disease Symposium (ICDS2013) last month….and if you only come away with ONE thing from this post — please remember this:

When you are planning for your biopsy, ask the doctor how many samples he or she will take.  The answer you want to hear is 4-6 samples; which is the current guideline.  It was discussed at #ICDS2013 many doctors are only taking two samples.

The research that came out in 2011 and reported in ScienceDaily.com says only 35% of gastroenterologists were doing at least 4 samples.  Dr. Peter Green, Director of the Celiac Disease Center at Columbia University, said at the symposium when the guideline was adhered to, diagnosis rates significantly increased.

Once the biopsy is complete, The University of Chicago Celiac Disease Center website says a skilled pathologist will confirm the diagnosis after looking at the biopsy samples. Also you should know there are no nerve endings in the small intestine so taking the samples does not hurt.

Bottom line is no one wants to be misdiagnosed.  You should get on the right track for your health.  It is okay to ask how many samples the doctor will take during the biopsy.  If you don’t like the answer, then ask them why they would not do the guideline of 4-6 samples?  See how they answer.  This is a good time to be strong and ask questions so you can have the best chance  at getting a reliable diagnosis.

*Side note: At this time the biopsy is common practice and is considered necessary for diagnosis. Sometimes things change.  On October 1, 2013, Dr. Alessio Fasano from the Center for Celiac Research in Boston, printed this perspective piece for the American Gastroenterological Association.  It says maybe some day biopsies won’t be as necessary as they are now. Click here to read it.  We will wait and see if anything changes in the near future.

**I am not a medical expert.  I am reporting from expert resources like Dr. Peter Green at ICDS and from the University of Chicago Celiac Disease Center.  Click the links below for more information on getting a biopsy.

University of Chicago Celiac Disease Center

National Institutes of Health –National Digestive Diseases Information Clearinghouse

Center for Celiac Research

 

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