The False Negative

[jmcbride4291]

I have researched this extensivly and over & over again came to find, tests are not reliable. That blood and biopsy can be neg but still will have celiac disease. I have read basically that scientists do not know why. Does anyone have any ideas or knowledge which could further explain this? I know leaky gut causes gluten intolerance and visa a versa, but would like to know more.

[wowzer]

My blood test came back negative, but I decided to try the diet anyway. I had 2 biopsies, one came back eczema and the other spongiotic dermatiits (they don't know what it is). When I looked up the natural cure for the spongiotic dermatitis, it was the gluten free diet. The more I read, the more I believe I have DH. I can look back in the years of my life having extremely itchy rashes. I had all sorts of diagnosis for them. Eczema, poison ivy, allergic drug reaction, hives. I just know after the last bout of itching, I didn't want to go through it again. I went gluten free January 1, 2007. I had so many symptoms that I had complained about over the years disappear. After a few weeks, I became even more sensitive to gluten. I do think the reason that my test was negative was that I was gluten light for 2 years before (kind of subconsciously). I would buy my favorite cookies and eat just one. I used to eat the whole bag sometimes. I do have a little sister that was diagnosed at a year old, so I grew up eating semi gluten free. It makes you wonder why they don't have a test that can determine this. You would think they could figure out this. I wonder if the levels they test would change after being gluten free?

[Ridgewalker]

Well, one thing we must remember is that Celiac Disease itself cannot be seen. Only the affects of it can be seen.

The biopsy looks for damage to the villi in the small intestine. In my mind, that damage is a "symptom" of celiac disease. It causes more symptoms, but it still isn't the disease itself. Eventually any Celiac who is not on a gluten-free diet will show that damage. But it happens over time. So a person with Celiac who has a negative biopsy could be said to have early stage Celiac. Or it could be that the analysis methods used on the biopsy samples are not sensitive enough yet.

As for the blood tests, I am not as well versed as others here regarding the technical specifics on what the tests look for. I know that one basic thing that is looked for is antibodies for gluten. I believe these are the anti-gliadin antibodies (???), but feel free to correct me if I'm wrong. But the key term here is "looking for." Are doctors looking in the right place?

There is some controversy about that. Should we be looking for antibodies in the blood, which is standard? Should we be looking in the stool? In the gut? In saliva? What would be most accurate? Many doctors don't like to admit that we have no idea, as of yet.

To make things more interesting, some people believe that "gluten-intolerance" and "celiac disease" are two different things. I believe they are one and the same. Even for the people who don't have the Celiac genes... you must keep in mind that while there are only a couple Celiac genes accepted in the United States, there are something like 9 or 10 genes that are acknowledged Celiac genes in some other countries.

There is also acquired gluten intolerance, which happens when another disease begins to cause food intolerances... There are others here who know much more than I about that, and how it's tested for.

It is painfully obvious to me, to many of us, that the standard methods of testing are inadequate. So many people here have a negative blood test, but positive biopsy, or the other way around. There are people here who have positives for both, but do not carry an official Celiac gene. My own mother was barely positive for both tests, and yet she was so ill, she was hospitalized. Her gi doc only officially diagnosed her when he combined the "low positives" with dramatic dietary response.

Well, I've rambled enough. But you asked for ideas, so there's my $0.02.

[par18]

  Ridgewalker said:

Well, one thing we must remember is that Celiac Disease itself cannot be seen. Only the affects of it can be seen.

The biopsy looks for damage to the villi in the small intestine. In my mind, that damage is a "symptom" of celiac disease. It causes more symptoms, but it still isn't the disease itself. Eventually any Celiac who is not on a gluten-free diet will show that damage. But it happens over time. So a person with Celiac who has a negative biopsy could be said to have early stage Celiac. Or it could be that the analysis methods used on the biopsy samples are not sensitive enough yet.

As for the blood tests, I am not as well versed as others here regarding the technical specifics on what the tests look for. I know that one basic thing that is looked for is antibodies for gluten. I believe these are the anti-gliadin antibodies (???), but feel free to correct me if I'm wrong. But the key term here is "looking for." Are doctors looking in the right place?

There is some controversy about that. Should we be looking for antibodies in the blood, which is standard? Should we be looking in the stool? In the gut? In saliva? What would be most accurate? Many doctors don't like to admit that we have no idea, as of yet.

To make things more interesting, some people believe that "gluten-intolerance" and "celiac disease" are two different things. I believe they are one and the same. Even for the people who don't have the Celiac genes... you must keep in mind that while there are only a couple Celiac genes accepted in the United States, there are something like 9 or 10 genes that are acknowledged Celiac genes in some other countries.

There is also acquired gluten intolerance, which happens when another disease begins to cause food intolerances... There are others here who know much more than I about that, and how it's tested for.

It is painfully obvious to me, to many of us, that the standard methods of testing are inadequate. So many people here have a negative blood test, but positive biopsy, or the other way around. There are people here who have positives for both, but do not carry an official Celiac gene. My own mother was barely positive for both tests, and yet she was so ill, she was hospitalized. Her gi doc only officially diagnosed her when he combined the "low positives" with dramatic dietary response.

Well, I've rambled enough. But you asked for ideas, so there's my $0.02.

You have pretty much summed up my feelings on the subject. The tests that are available now are effective if the right ones are done and the person is sick enough to show positive. I did not have blood tests prior to postive biopsy but after being on the diet for over a year my levels (blood) were perfectly normal as one might expect after having been 100% gluten free in that time. To me the only reliable test is the diet response. If a person does not respond after a reasonable amount of time I would start to look in another direction. I have yet to read a post where a person had a false positve on "diet response". I would expect the majority of the people who really do have undiagnosed Celiac disease to see improvement in a matter of days. The biggest obstacle I have seen is a person's reluctance to give the diet an honest effort. Most want to rule out everthing else and then as a last resort go gluten-free. So much for my 2 cents.

[Tim-n-VA]

It might just be a matter of sematics but saying that tests aren't reliable could be deceptive. Medical tests can have false positive and false negatives and the rate of these false results vary from test to test. When you combine that with the fact that there are some symptoms that can be caused by multiple conditions and with the fact that individuals react to the same thing in different ways, no test is really definitive. The idea is getting into an area of reasonable certainty.

With regard to gluten intolerance being the same things as Celiac disease: Gluten intolerance is used in so many contexts just on this board that you cannot make that as a universal statement. In the broader context outside of this board you'd find that intolerance frequently means the body can't digest an item (compare to lactose intolerance). That is a problem in the GI system not in the immune system. Even if you take the more common view on this board that gluten intolerance means "something" happens when I eat gluten, you still have true allergies as well as celiac as the possible cause.