Answers From A Gluten Doctor – Part 6 Testing, Testing, Testing

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by Carol Kicinski on April 27, 2010

From the number of emails I received requesting that Dr. Vikki clarify testing for gluten sensitivity, apparently I am not the only one confused.

I recently had a blood test (ordered from another doctor) and he proceeded to tell me I tested negative for gluten intolerance.  As we know I have tested positive many times in the past and the simple truth is when I eat gluten I feel like crap and when I don’t, well, I don’t. Did I test negative because I have been gluten free for so long? Any advice to others that have a similar experience?

Let’s begin by reviewing the various tests available for diagnosing gluten sensitivity and celiac disease as well as their accuracy level and any inherent weaknesses.

The following tests are used to rule in Gluten Sensitivity and not to rule it out because there are many false negative test results. If any one of the testing methods below shows a positive reaction to gluten then you need to consider yourself gluten sensitive.

1. Small Intestinal Biopsy –an invasive test showing specific cellular changes associated with celiac disease. If it’s positive it means you have celiac disease and have lost most of the surface area of your small intestine which is very serious. It is not considered a sensitive test because so much damage has to occur before it is positive. It is possible to have celiac disease in an early stage or gluten sensitivity without this test showing positive.

2. IEL (intraepithelial lymphocyte) count –an early marker for celiac as well as gluten sensitivity, but it can only be done invasively, similar to the small intestine biopsy.

3. Serum anti- transglutaminase – a blood test that is the first test typically used to determine the presence of celiac disease. Similar to the intestinal biopsy it only tends to be positive once severe damage to the small intestine has occurred.

4. Deamidated anti-gliadin antibodies – a blood test used to detect celiac disease. This is considered to be one of the more sensitive tests currently.

5. Genetic Testing – a simple buccal swab will let you know if you carry the HLA DQ 2, 8, 1 or 3 gene. (The latter two are felt to be associated with gluten sensitivity vs the first two that are associated with celiac disease.) Having the gene shows a susceptibility but doesn’t guarantee that you will get the disease.

To your good health,

Dr. Vikki Petersen

Founder of HealthNOW Medical Center
Co-author of “The Gluten Effect” (gluten free diet tips and more)

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Categories:    Gluten Intolerance

{ 4 comments… read them below or add one }

jean April 28, 2010 at 4:05 am

When doing testing for celiac, one must not be on a gluten-free diet as yet. Otherwise, the tests will more likely than not come up negative. If one has tested postive with other tests, there is no doubt the person has a problem with gluten. No need to keep taking tests. The best test is going off gluten and seeing what results.


Tiffany April 28, 2010 at 8:55 am

I'm agreeing with Jean. If you are getting tested for Celiac Disease you have to be consuming gluten for a test to have the chance of being positive. For blood tests, if you aren't consuming gluten there is nothing for your body to react against and the IgA (immunoglobulin) that they are testing for won't be there. So it will turn up negative.

If you are gluten free and you are getting a biopsy, it's the same thing. The damage to your intestines is slowly reversed and they become healthy again when you go gluten free. If you have been gluten free long enough the damage they are looking for will no longer be there.

If you are being tested for Celiac and are eating gluten free, you have to go on what the doctors call a gluten challenge. Basically you eat enough gluten to get a response and re-damage your intestines, this could take up to 3 months, so if you're going to do that you should have a good reason.


Tasty Eats At Home April 28, 2010 at 10:33 am

So this begs the next question – what really is the difference between gluten sensitivity and celiac disease? Does celiac disease actually cause the villi in the intestines to become damaged, and gluten sensitivity does not? I ask because I was given a blood test back in 2004 (negative) and a (controversial) stool test and genetic test in 2007 (stool test negative, and my genetic test revealed that I have double DQ1 genes – meaning I'm predisposed to gluten sensitivity). I have now been gluten-free for 10 months, and know for a FACT that gluten causes problems. But it makes me wonder how I can be so sensitive to gluten (I have symptoms from the slightest cross-contamination), and yet not be genetically predisposed to have celiac disease. (I'm not sure what genes my Dad has, but he actually was diagnosed with celiac via small intestine biopsy about 15 years ago) I am most concerned whether I can causing damage if I accidentally eat gluten, or if I'm just "miserable" for a few days.


msamericanpatriot August 25, 2011 at 1:19 pm

Can you test false positive for gluten intolerance? When I eat gluten my tongue does NOT feel furry but when I go gluten free it does. But the doctor (one of these chiropractors turned endocrinologist types) insists that I am gluten intolerant. I can NOT stand to go gluten free. They say it is good for autistic people (which I am one) but I can understand starting something like this if I was a child and NOT a grown woman. Also I feel somewhat better emotionally when I consume gluten then when I go without because carbs are supposed to be mood enhancers and the only carbs I will eat are bread and pasta variety.


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