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Response to NY Times Article: Confirming a Diagnosis of Celiac Disease

I wrote this response below to address a recent New York Times article: Confirming a Diagnosis of Celiac Disease.

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Celiac.com 01/13/2010 - The problem with current diagnosis criteria for celiac disease is that it takes a certain degree of damage to intestinal villi in order to get a formal diagnosis. Since celiac disease with villi damage are just one manifestation of a much broader and more widespread problem--gluten sensitivity--many people who could still develop serious health problems if they continue to eat gluten, will go undiagnosed under the current definition of celiac disease.

The reality of gluten sensitivity is that around 7 to 12% of the US population test positive for antibodies which are an indicator that their immune system is mounting a response to gliadin, the part of gluten that causes the reaction in those who are sensitive. Many of these people may never get flattened villi, however, many may end up with other conditions that are triggered by gluten exposure in sensitive individuals, for example nerve damage (ataxia), liver problems, diabetes, thyroid issues, etc..

In the past 10 years the diagnostic criteria for celiac disease have been changed significantly to include various degrees of villi damage (Marsh Criteria), and as a result, more people are now being properly diagnosed. In the next 10 years I predict that blood tests alone will replace the use of all biopsy results to diagnose celiac disease, as they are a far more sensitive indicator of gluten sensitivity. Once this happens we will finally reach a point where those affected can be properly treated and avoid the risk of the many disorders that have been associated with sensitive individuals who eat gluten, some of which are described here.

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6 Responses:

 
Pam
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said this on
14 Jan 2010 7:39:49 PM PDT
Thank you Scott! It's so wonderful to know someone is speaking out for those who are gluten sensitive.
Gluten sensitive sibling of a celiac.

 
Zorica
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said this on
21 Jan 2010 11:21:31 AM PDT
Dear Scott,
I greatly support your efforts to clarify that health problems associated with malnutrition (induced by shortened or flattened intestinal villi), are only the part of health disturbances induced and/or sustained by immune mediated reaction induced by gluten. Zorica

 
BarbaraDH
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said this on
01 Feb 2010 7:19:19 AM PDT
I think it's wonderful if we can get away from doing the invasive testing to confirm celiac. However, it is well known that the blood test has a high rate of false negatives (I'm living proof of that). I think the medical community needs to be more open to other types of testing to pin down this diagnosis.

 
Gloria Brown
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said this on
01 Feb 2010 11:39:05 AM PDT
Bravo! It is imperative the medical community replace the outdated "Gold Standard" of flattened villi for diagnosing celiac with immediate cost-effect testing which addresses the needs of today's populations to prevent further damage from occurring.

 
Patty Dineen
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said this on
02 Feb 2010 10:22:39 AM PDT
I really appreciated your article and the points you made in response to Dr. Crowe's article. I also posted a response to her article.

 
Eleanor
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said this on
28 Feb 2010 7:19:10 AM PDT
This was very helpful. Thanks!




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By the way, I got my biopsy pathology report and the doctor took 2 biopsies, not the recommended 4-6. It says no "significant villous blunting not seen." I don't know if I should laugh or cry---so frustrating.

Thank you, this does feel helpful and reassuring. Did you end up getting blood tests again after going gluten-free? Do you have to worry about cross contamination as much as with a celiac diagnosis? How do you explain it to friends and family? Non-Celiac gluten sensitivity sounds so vague and I know it's dumb, but I worry about people not taking me seriously.

Helen, a woman with severe lifelong eczema/dermatitis, wrote to me a few weeks ago, saying "I have taken your advice and been strictly gluten free for five months now. The eczema inflammation is 99% gone and my skin quality has significantly improved. I do still get a bit itchy around my neck area and elbow creases, more so at night when it is warm. I have noticed a significant improvement in my asthma also. I still use antihistamines perhaps once or twice a week for runny nose. Does this mean I will need to be gluten free for life? Which of your books would you say would be the most relevant for someone in my position? Thank you for your assistance, regards, Helen. View the full article

Hello and welcome Reading your post it looks like each of your results were within the 'normal' range. There doesn't appear to be mention of a total serum IGA to make sure you have enough of this to begin with to make the test accurate however - but there are others here who are more experienced who may be able to tell you more. There are some other celiac tests: tTG IgA and tTG IgG -DGP IgA and DGP IgG -EMA IgA -total serum IgA and IgG (control test to ensure tests are not false negatives) They may not be covered by your provider however. Note that you appear to have been avoiding gluten somewhat already, that could impact on the tests accuracy. Your symptoms sound like they could be gluten related (but then practically everything could!) but you may want to discuss with your doctor whether to push for further testing or move to trial gluten free diet. Some people, like myself, test negative but still find symptoms respond to gluten free. Best of luck!

There's a great post by Tarnalberry in that thread.