Genetic Testing Question (HLA-DQ 8 and HLA-DQ 3)

[madameflan]

Hello all! I'm fairly new to this community. Although I've been reading many posts on here for a while, this is only my second posting! I am pre-diagnosis, although I am almost 100% certain that I am at least gluten sensitive. Due to time, I'll make another post later on detailing more of my symptoms and my experiences on this crazy journey. Currently on a gluten-free diet because it is not worth the suffering (cheated enough times that now just looking at a cookie makes my everything hurt).

This question is more towards anybody who has a good understanding of genes, alleles, etc. I have finally coughed up the dough to get genetic testing done, and my alleles are HLA-DQ 8 and HLA-DQ 3. To my very elementary understanding, HLA-DQ 8 is one of the two HLA genes associated with the development of celiac disease. There is also some controversial and currently unreplicated data suggesting that HLA-DQ 3 is associated with gluten sensitivity. Regardless of that controversial piece, it is also my understanding that HLA-DQ 8 is a "form" of the HLA-3 allele.

If HLA-DQ 8 is a form of HLA-DQ 3, what is the difference between HLA-DQ 3 and HLA-DQ 8, that I have both of them? In other words, what makes it HLA-DQ 3, instead of one of its sub-categories or forms? Not sure if the question makes sense, or if anybody knows! Thanks for any info!!

[cyclinglady]

On 4/15/2018 at 5:44 PM, madameflan said:

Hello all! I'm fairly new to this community. Although I've been reading many posts on here for a while, this is only my second posting! I am pre-diagnosis, although I am almost 100% certain that I am at least gluten sensitive. Due to time, I'll make another post later on detailing more of my symptoms and my experiences on this crazy journey. Currently on a gluten-free diet because it is not worth the suffering (cheated enough times that now just looking at a cookie makes my everything hurt).

This question is more towards anybody who has a good understanding of genes, alleles, etc. I have finally coughed up the dough to get genetic testing done, and my alleles are HLA-DQ 8 and HLA-DQ 3. To my very elementary understanding, HLA-DQ 8 is one of the two HLA genes associated with the development of celiac disease. There is also some controversial and currently unreplicated data suggesting that HLA-DQ 3 is associated with gluten sensitivity. Regardless of that controversial piece, it is also my understanding that HLA-DQ 8 is a "form" of the HLA-3 allele.

If HLA-DQ 8 is a form of HLA-DQ 3, what is the difference between HLA-DQ 3 and HLA-DQ 8, that I have both of them? In other words, what makes it HLA-DQ 3, instead of one of its sub-categories or forms? Not sure if the question makes sense, or if anybody knows! Thanks for any info!!

I am not knowledgeable about celiac genes as I never had them run.  What I do know is that some 35% of the population carries the genes that could develop into celiac disease but only a very few actually do.  Genetic testing is used to rule out celiac disease and not to diagnose it.  Since you are gluten free, the only way to get a definitive diagnosis would be to do a gluten challenge under a doctor’s care.  

What should you do?  Only you know if it is worth going back on gluten for 8 to 12 weeks.  Otherwise, just stick to the diet for the rest of your life and do not look back.  Make sure you really understand the gluten-free diet well.

Take care.  

[madameflan]

On 4/24/2018 at 12:23 PM, cyclinglady said:

I am not knowledgeable about celiac genes as I never had them run.  What I do know is that some 35% of the population carries the genes that could develop into celiac disease but only a very few actually do.  Genetic testing is used to rule out celiac disease and not to diagnose it.  Since you are gluten free, the only way to get a definitive diagnosis would be to do a gluten challenge under a doctor’s care.  

What should you do?  Only you know if it is worth going back on gluten for 8 to 12 weeks.  Otherwise, just stick to the diet for the rest of your life and do not look back.  Make sure you really understand the gluten-free diet well.

Take care.  

Hi Cyclinglady! Thank you so much for your reply. At the moment, I cannot afford to have the testing necessary, so I'm just going to remain gluten-free for the time being. That has sort of been the catch -- I'm not sure if I'm willing to go back to gluten for that long to get the diagnosis. But it would help to be diagnosed, if only to have my family and those close to me to take me more seriously... but in the meantime, I'm feeling much better off of gluten! And thank goodness for the improvement in my life!!

[cyclinglady]

Feeling good.  Isn’t that really the main goal?  My hubby went gluten free 17 years ago per the poor advice of two medical doctors.  The diet worked.  Does he have celiac disease?  We will never know as he refuses to get sick in order to get a diagnosis.  Funny thing though, I was diagnosed with celiac disease some 12 years later!  Having a diagnosis can be helpful.  I tend to get way more support from medical and family.   

Take care!