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Hello all,

 

So in 2011 I was tested for antibodies for celiac.  Everything came out negative, but my doc did a biopsy anyway.  That came back way positive.  Then I went gluten free in Jan of 2012, and pretty much every symptom/bad thing/illness/problem I had completely went away!  My doc then diagnosed me with celiac.  Now, recently my sister did one of those gene coding things with my mom and my mom has the celiac gene, HLA DQ2.  So do y'all think it's logical that I have that gene too?  If so, why didn't I have antibodies?  My doc said (and no, I don't have too much faith in her), that if I didn't have antibodies there was no way possible to have the gene, but it looks like I probably do have the gene, but why then no antibodies.  She tested me twice for everything (I think).

 

Thanks,

Linda

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Hello all,

So in 2011 I was tested for antibodies for celiac. Everything came out negative, but my doc did a biopsy anyway. That came back way positive. Then I went gluten free in Jan of 2012, and pretty much every symptom/bad thing/illness/problem I had completely went away! My doc then diagnosed me with celiac. Now, recently my sister did one of those gene coding things with my mom and my mom has the celiac gene, HLA DQ2. So do y'all think it's logical that I have that gene too? If so, why didn't I have antibodies? My doc said (and no, I don't have too much faith in her), that if I didn't have antibodies there was no way possible to have the gene, but it looks like I probably do have the gene, but why then no antibodies. She tested me twice for everything (I think).

Thanks,

Linda

Hi Linda!

The antibody tests are not perfect. Do you know which celiac antibody tests were run?

You likely inherited the celiac gene from your mother...but the positive biopsy with complete resolution of symptoms after removing gluten is celiac disease.

Edited to add: I would request written copies of your past testing and all future testing.

Edited by GottaSki

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Having a gene for Celiac does not mean you have Celiac.  But, without the Celiac gene, you likely don't have Celiac.

 

"Genetics don’t diagnose celiac disease. They do, however, clarify whether an individual is “at-risk” for it. If this is the case, you should closely monitor your symptoms and submit to blood tests every 2-3 years or immediately upon the sight of symptoms. When the genetic predisposition for celiac disease was detected (on Chromosome 6) researchers noted that the genes were a necessary but not sufficient condition for the disease to develop. In fact, up to 1/3 of the U.S. population has the genes for celiac disease. Meaning, those who have the DQ2 or DQ8 gene can develop celiac disease at any time, but only about 5% of those people actually will."

 

http://www.cureceliacdisease.org/archives/faq/if-i-have-a-gene-for-celiac-disease-does-that-i-mean-i-have-it

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Having a gene for Celiac does not mean you have Celiac.  But, without the Celiac gene, you likely don't have Celiac.

 

"Genetics don’t diagnose celiac disease. They do, however, clarify whether an individual is “at-risk” for it. If this is the case, you should closely monitor your symptoms and submit to blood tests every 2-3 years or immediately upon the sight of symptoms. When the genetic predisposition for celiac disease was detected (on Chromosome 6) researchers noted that the genes were a necessary but not sufficient condition for the disease to develop. In fact, up to 1/3 of the U.S. population has the genes for celiac disease. Meaning, those who have the DQ2 or DQ8 gene can develop celiac disease at any time, but only about 5% of those people actually will."

 

http://www.cureceliacdisease.org/archives/faq/if-i-have-a-gene-for-celiac-disease-does-that-i-mean-i-have-it

We're very aware of this. It was biopsy and resolution of symptoms on the diet that preempted the dx.

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We're very aware of this. It was biopsy and resolution of symptoms on the diet that preempted the dx.

 

 

Sorry.  I didn't know the OP was aware of this.  I wasn't quite sure exactly what she was asking so I thought she might like a little info on the genetics of Celiac.  I don't think it hurt anything to put it here.  Maybe someone else reading won't know and would like the link?

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Sorry.  I didn't know the OP was aware of this.  I wasn't quite sure exactly what she was asking so I thought she might like a little info on the genetics of Celiac.  I don't think it hurt anything to put it here.  Maybe someone else reading won't know and would like the link?

I also apologize, I thought the post was questioning the dx. Thanks for the extra info : )

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This is for Linda - but anyone else may read it,too.   :D

 

 

"Is it possible to have a negative blood test, but a positive biopsy?

While rare, it is possible to have a negative blood test and still have celiac disease. tTG sensitivity is approximately 98%, which means that 2% of all celiacs may have a normal tTG level. Sometimes tTG antibodies are not produced enough to show up in the blood stream and can only be detected in the intestinal mucosa by special means.

IgA deficiency is a reason why you might have a negative blood test, but a positive biopsy."

 

http://www.cureceliacdisease.org/archives/faq/is-it-possible-to-have-a-negative-blood-test-but-a-positive-biopsy

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This is for Linda - but anyone else may read it,too.   :D

 

 

"Is it possible to have a negative blood test, but a positive biopsy?

While rare, it is possible to have a negative blood test and still have celiac disease. tTG sensitivity is approximately 98%, which means that 2% of all celiacs may have a normal tTG level. Sometimes tTG antibodies are not produced enough to show up in the blood stream and can only be detected in the intestinal mucosa by special means.

IgA deficiency is a reason why you might have a negative blood test, but a positive biopsy."

 

http://www.cureceliacdisease.org/archives/faq/is-it-possible-to-have-a-negative-blood-test-but-a-positive-biopsy

I read too :)

This is why I suggested getting written copies of your prior tests. Not many doctors....especially primaries....run a complete celiac antibody panel with total serum IgA .... Thus making an imperfect system much less accurate.

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 Now, recently my sister did one of those gene coding things with my mom and my mom has the celiac gene, HLA DQ2.  So do y'all think it's logical that I have that gene too?

 

Thanks,

Linda

Do you know if your mother had one or two copies of HLA DQ2? if she had two copies, you have to have at least one copy (and one is enough for Celiac).

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Thank you all for the responses.  I don't know if my mother has one copy or two.  I also had a very positive biopsy and complete resolution of symptoms which is why my doc diagnosed celiac.  Oh, and that was a couple of years ago.  I just found out about the gene thing the other day.  The other thing that concerns me is that I have four children who also tested negative blood work wise.  They have not been biopsied, but my daughter had a ton of symptoms that resolved after she went gluten free.  In fact, she feels so much better that she said she will never do a gluten challenge for a biopsy, so she will never be officially diagnosed.  Unfortunately, one of my boys has some symptoms, but they aren't intestinal (like a lot of mine were), so he won't go gluten free even if it he were told to.  I'm kinda considering getting my kids gene tested, but I really don't know if it's necessary...

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I have seen other numbers, like 20% are Ttg negative when there is total villous atrophy and 40% are negative on Ttg  when there is patchy celiac (the most common form nowadays)

 

The antibodies are made locally in the intestine, and just a little spills over into the blood, and the amount can vary a lot. Additionally, there is a rather high cutoff because they want to avoid sending people to biopsies that do not have enough villi damage to get a diagnosis....

 

(The latter with the 40% I ran across in some articles about the then new DGP test, which is designed to find celiac when there is patchy celiac, and early celiac)

 

Nora

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