Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

ANDOBEAR

Finallyn Got My Results From Prometheus

Recommended Posts

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.

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


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.


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

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


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites