Those Of You Who Know About Blood Tests....

[CMCM]

Well, this is kind of interesting. I found an old blood test from 2001....at that time I had requested a celiac test from my GP, who really knew nothing about celiac disease. Anyhow, I just found the old results....at the time I didn't realize this paper was the celiac test because it doesn't say that, but with my new-found knowedge I realize that's what it was. Here goes:

Antigliadin AB, gliadin AB IGG: 3 where less than 20 is called "normal."

Gliadin AB IGA was 2.

DO THESE SOUND LIKE THE RIGHT TESTS?

How about 'them apples! Of course, the doctor said "Your test was negative."

So 5 more years of digestive hell for me!

Yet in January 2006 Enterolab rates me like this based on a stool sample:

Fecal Antigliadin IgA: 24 (normal is <10)

Fecal Antitissue Transglutaminase IgA 19 (normal is <10)

Microscopic Fecal Fat Score 67 (normal is <300)

HLA-DQ Gene DQB1 0201, 0604

Fecal Anti-casein IgA antibody 22 (normal <10).

Now I was having all sorts of problems back in 2001 when I requested the celiac blood panel. While I was eating gluten, I have always minimized what I ate. For whatever reason, not much showed up in my blood, yet I was having symptoms. Kind of strange. But my current fecal fat score was low, which indicates no malabsorption to speak of, so could that be why nothing showed up in my blood test???

I think the lesson in all this is that the blood test doesn't tell the whole story.

No wonder no one knows quite what to do with all this, and how to interpret things. After my "negative" blood test I was really looking to other possibilities to explain my digestive woes. But you know, my incredibly sensitive celiac mom would have a negative blood test now too. Maybe a lot of it has to do with how much gluten you eat. Although I ate gluten things, I have really minimized what I ate for many years. I didn't eat it every day.

I dunno....what do you more knowledgeable folks think about all this?

[Guest nini]

those tests are only a partial celiac panel... doesn't look like the complete panel, they only did the Anti Gliadins and those are not even in teh bare minimum that they would have needed to do to determine if Celiac was a possibility.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

here is the complete panel... They would have to do at minimum the EMA, tTG and, total serum IgA to get a more accurate picture... plus the AGA's...

As the Celiac Specialist that spoke at our meeting said though, many people can have negative test results and still have damaged villi...

the blood tests are only part of the picture. Ultimately the dietary response is your best indicator. How does your body react to gluten? Doesn't like it? Then stay off it. Period. It's that simple.

[CMCM]

those tests are only a partial celiac panel... doesn't look like the complete panel, they only did the Anti Gliadins and those are not even in teh bare minimum that they would have needed to do to determine if Celiac was a possibility.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

here is the complete panel... They would have to do at minimum the EMA, tTG and, total serum IgA to get a more accurate picture... plus the AGA's...

As the Celiac Specialist that spoke at our meeting said though, many people can have negative test results and still have damaged villi...

the blood tests are only part of the picture. Ultimately the dietary response is your best indicator. How does your body react to gluten? Doesn't like it? Then stay off it. Period. It's that simple.

This incomplete blood test just shows how utterly CLUELESS most doctors are. At the time I requested the test, I was having a lot of digestive and OTHER symptoms, and I told my doctor about wanting to get tested, and he was of course totally ignorant about what test to order. And he was also a bit reluctant to order the test because, after all, I didn't fit the classic profile. Anyhow, I would say to anyone who is thinking of getting testing, make sure all your ducks are in a row before you go to the expense of blood tests!

[nikki-uk]

My husband was finally dx at aged 40.

He too had a neg result on the bloods,but a biopsy showed positive.

He has alway's been very thin,and (for as long as I've known him-20yrs!)hardly ever ate any sizeable amount.

By the time of diagnosis he could only manage a few mouthfuls(he was very ill),so hardly suprising he got a negative!

[CMCM]

My husband was finally dx at aged 40.

He too had a neg result on the bloods,but a biopsy showed positive.

He has alway's been very thin,and (for as long as I've known him-20yrs!)hardly ever ate any sizeable amount.

By the time of diagnosis he could only manage a few mouthfuls(he was very ill),so hardly suprising he got a negative!

Hi Nikki...I see you are in the UK. I thought doctors in Europe were better at diagnosing celiac than they are here. Am I wrong? Is it just as tough to get a real diagnoses there too???

[aikiducky]

It varies hugely from country to country in Europe, and it also depends on who you happens to see, of course.

Pauliina