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How Good Is Celiac Testing?

I found your site oddly by researching body pain and celiac. It returned a link to your forum and I read all of your sections from there. I read that the tests are mostly accurate if the tolerances are not too high and the dietary conditions are right. I just started to readjust my diet about a week before the test, so I wonder about the results. I began feeling better as I started following the diet and have "tested" myself periodically to see if gluten really creates a reaction. I can have gluten somewhere in a meal and anywhere within the first 12 hours regret it. What can I do to get a more accurate test? What is a possible alternative issue based upon my personal tests if celiac is not it? Are there any perscriptions that may create a negative blood test? I am concerned and not afraid to find the answer no matter the time or labor. I have confronted doctors before about lazy doctoring and misdiagnosing. I have a great doctor now that is very interested in a solution that is correct so I can move on. My thoughts are also on my mother who just went through a terrible ordeal and is going to get the celiac test as soon as possible. I am also very concerned for my three children since I found that celiac is genetic. Everything is pointing to celiac except for the tests??? Thanks C.

Dr. Rima's Response:

In medicine we are brainwashed to test for a certain problem and then to believe there is no problem if the "test is negative." How many people are told the problem is "all in your head" if a test is negative....a very sad state of affairs. You did you own test, Guy. You KNOW gluten is a problem. You've done it over and over. It's not in your head! So why do you need to "confirm" it with a test? Trust your body and to listen to it. And your body is telling you gluten is bad for you! So don't eat it!

About one in a hundred or so people have gluten-intolerance. It's much more common than anyone ever thought. This is true all over the world in many different cultures and races. This is true even with the insensitive blood tests that we have now. I think many more people have somewhat lesser levels of intolerance to gluten that do not show up on the testing. The celiac panel antibodies do not become positive until there is significant (and severe) damage to the gut lining. The gut biopsies are even less sensitive in diagnosing Celiac.

Clinically, the stool testing by www.enterolab.com, I think, finds more early stage gluten intolerance and Celiac, especially in children. I don't even bother doing the blood testing in children any more. If you really need something written on a piece paper that says "YES, YOU have Celiac," spend the money on getting the stool testing for yourself and your family. You don't need a doctor's prescription to get tested.

Celiac/gluten-intolerance is a result of our modern agriculture. The wheat is not what it used to be (not what God created) several hundred years ago. We have selected and selected wheat that has higher and higher levels of wonderful gummy gummy stuff (gluten protein) that makes wonderful cakes and deserts. The gluten has become more and more difficult to digest over the years such that more and more people have problems with it. The bits of undigested protein are recognized as a "foreign object" by our immune system. Our bodies attacks it, attacking the gut in the process, poking a bunch of little tiny holes in the gut, setting us up for the Celiac syndrome.

One of my teenage patients whose parents were Celiacs didn't want to get tested because he knew what the answer was going to be. He could eat anything he wanted to as long as he didn't have a test to tell him not to! He made the comment that I told everyone not to eat gluten. I said no, not eveyone, but a lot of people who don't feel well with various chronic rheumatic and fatigue illnesses do much better off gluten. Are they really Celiac? Maybe not. But it may be worth feeling better for the first time in your life by controlling your food supply. For some it is absolutely wonderful not to hurt any more. For some it is truly worth it.
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