Finallyn Got My Results From Prometheus

[ANDOBEAR]

Ok so here are the results

Serological markers for celiac are NOT detected.

AGA IgG 0.6U/ml reference <10.0 U/ml

AGA IgA 0.5 U/ml reference <5.0 U/ml

TTG IgA 0.1 U/ml reference <4.0 U/ml

EMA IgA negative reference negative

Total IgA 117 mg/dl reference 44-441 mg/dl

Alleles Detected DQ2 heterodimer

Category 4 DQ2 heterozygous /10x risk over general population/ relative risk high

Summary Interpretation: Results DO NOT exclude a diagnosis of celiac disease.

So, if the serological markers are not detected, why can't celiac be excluded? Is this just because I have the gene, or am I missing something in the numbers? The nurse at the GI says I DON"T have it based on this test and the biopsy of my duodenum, which showed increased intraepithelial lymphocytes at the vilous tips, which the pathologist noted is suggestive of celiac. I'm not sure how she came to that conclusion since the biopsy is suggestive and the blood can't rule it out. I'm seeing a specialist tomorrow so maybe he can help explain it to me but if someone here can get me started on understanding these results, that would be great.

[ShayFL]

I know there are a lot of false negative with blood work. With what they told you about the biopsy and having the DQ2 gene, if I were you, I would go Gluten Free and let the diet speak for itself. I might even go on the diet even if I had NO symptoms. Based on that biopsy and having the gene. Life is too short to worry about eating one food. There is so much more food to enjoy and you could prevent cancers that are related to Celiac. Just my 2 cents.

[ANDOBEAR]

I know there are a lot of false negative with blood work. With what they told you about the biopsy and having the DQ2 gene, if I were you, I would go Gluten Free and let the diet speak for itself. I might even go on the diet even if I had NO symptoms. Based on that biopsy and having the gene. Life is too short to worry about eating one food. There is so much more food to enjoy and you could prevent cancers that are related to Celiac. Just my 2 cents.

I'm interested to see what the GI specialist says. If he suggests going gluten free, I will. I want to get to the root of the problem.

[aikiducky]

So, if the serological markers are not detected, why can't celiac be excluded?

Because the blood tests have a lot of false negatives.

Pauliina

[nora-n]

Because the blood tests are calibrated to first be positive when almost all, or all, biopsies are positive. They have a very high cutoff. They could have set a lower one, but then they woud over and over have to explain why the biopsies do not show villous atrophy then.

Here in europe in many places we get lots of money from the health insurance (state) if diagnosed celiac, so the tests are so strict. They have to use the same criteriae over in the U.S. , probably because they want to keep the same standards.

And there was an asrticle here in celiac.com where scientists sent blood from diagnosed celiacs (by biopsy) to lots of different labs and many labs only found half of the celiacs, and others found almost all. They did not disse which labs they were.

This is becasue they set different cutoffs.

But my daughter was diagnosed with negative biopsies and negative blood tests, just based on clear symptoms off and on gluten.

They can do that with you too.

Just get the DH biopsied, and that will settle the whole issue.

It has to be biopsied during and outbreak and not the rash itself, becasue the IgA there is used up. Should be healthy skin next to a rash, and during an outbreak. Mine was negative because it was not during an outbreak.

nora

[ANDOBEAR]

Because the blood tests are calibrated to first be positive when almost all, or all, biopsies are positive. They have a very high cutoff. They could have set a lower one, but then they woud over and over have to explain why the biopsies do not show villous atrophy then.

Here in europe in many places we get lots of money from the health insurance (state) if diagnosed celiac, so the tests are so strict. They have to use the same criteriae over in the U.S. , probably because they want to keep the same standards.

And there was an asrticle here in celiac.com where scientists sent blood from diagnosed celiacs (by biopsy) to lots of different labs and many labs only found half of the celiacs, and others found almost all. They did not disse which labs they were.

This is becasue they set different cutoffs.

But my daughter was diagnosed with negative biopsies and negative blood tests, just based on clear symptoms off and on gluten.

They can do that with you too.

Just get the DH biopsied, and that will settle the whole issue.

It has to be biopsied during and outbreak and not the rash itself, becasue the IgA there is used up. Should be healthy skin next to a rash, and during an outbreak. Mine was negative because it was not during an outbreak.

nora

The rash I get looks nothing like the pictures of DH I see online. Its more like a cross between hives and eczema. It has been diagnosed as eczema by my old PCP. I will ask the specialist if he feels its worthy of a biopsy.