Confused About Genetic Testing Results

[DebW]

We did genetic testing on my husband and son through Enterolab, and now that I have the results, I'm thrown as to the difference between celiac/gluten intolerance/gluten sensitivity. (Is there even a difference between the last two?)

I know celiac disease involves damage to the intestine, but can gluten intolerance do the same? What ARE the manifestations of gluten intolerance, and what would happen if someone who was double-gened gluten sensitive continued consuming gluten?

Here are the results:

Husband:

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0502

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)

Son:

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0502

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)

Both had this message:

Interpretation Of HLA-DQ Testing: Although you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having two copies of a gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

We all eat gluten-free at home, but my husband consumes gluten at work. (The rest of us are entirely gluten-free.) My son had symptoms which improved on the gluten-free diet. My husband had no symptoms.

The more I read about this, the more confused I am. Some articles seem to indicate that gluten sensitivity to celiac disease is a progression of sorts, while others seem to draw a clear line between the two, with gluten intolerance being rather vaguely defined.

Any light you could shed on this would be most appreciated!

Thanks!

Deb

[confused]

Ok from the research I have done and conclusions I have made, it looks like your hubby needs to stay away from gluten all the time. Two DQ1 genes are linked to many neurological problems. Your husband may have symptoms that he is not aware of that are not Gi related.

I am sure ohters will have more information. But i just wanted to respond with the little that I know.

Are you gluten free cause you are celiac, have u had the gene test done?

paula

[gfp]

Ok from the research I have done and conclusions I have made, it looks like your hubby needs to stay away from gluten all the time. Two DQ1 genes are linked to many neurological problems. Your husband may have symptoms that he is not aware of that are not Gi related.

I am sure ohters will have more information. But i just wanted to respond with the little that I know.

Are you gluten free cause you are celiac, have u had the gene test done?

paula

Hey... can you point any links .....

I never bothered with genetic testing since it seemed superfluous (having positive blood tests).... however I always feel the neuro-symptoms hit me harder than the GI ones... (I do get GI .. I just don't seem so bad as some here)...

This really is interesting, it might be worth me getting the gene test afterall ....

[Nantzie]

I have DQ1 (double). The neuro problems are the worst part for me. I came across celiac as a way to stop my GI problems, but it turns out my mobility problems (I could barely walk by the time I found out about celiac), fibro-type pain, insomnia, nightmares, headaches, anxiety, depression, anger, memory problems, social anxiety, etc. were all due to gluten. Never would have suspected that.

The mood issues I always just thought were my charming personality.

I think if you can do it, the gene test through enterolab is worth is just for scientific curiosity's sake.

You can also do a search on the web for your gene type and come up with all sorts of information. For example I found out that one of my genes ( HLA-DQB1*0602 ) seems to be protective against diabetes, but some people with that gene develop narcolepsy. And the other one ( HLA-DQB1*0609 ) is an Ashkenazi Jewish gene, which lets me know that my mom's breast cancer was likely genetic, and I need to be especially careful in that regard. There are also a lot of other genetic diseases in the Ashkenazi group. This was a huge surprise because nobody in my family ever heard anything about anyone being Jewish. It must have been someone who married and converted to Luteranism, because both sides of that family are from Sweden and everyone was Lutheran.

So it is kind of fun to learn about.

Nancy

[gfp]

I have DQ1 (double). The neuro problems are the worst part for me. I came across celiac as a way to stop my GI problems, but it turns out my mobility problems (I could barely walk by the time I found out about celiac), fibro-type pain, insomnia, nightmares, headaches, anxiety, depression, anger, memory problems, social anxiety, etc. were all due to gluten. Never would have suspected that.

The mood issues I always just thought were my charming personality.

I think if you can do it, the gene test through enterolab is worth is just for scientific curiosity's sake.

You can also do a search on the web for your gene type and come up with all sorts of information. For example I found out that one of my genes ( HLA-DQB1*0602 ) seems to be protective against diabetes, but some people with that gene develop narcolepsy. And the other one ( HLA-DQB1*0609 ) is an Ashkenazi Jewish gene, which lets me know that my mom's breast cancer was likely genetic, and I need to be especially careful in that regard. There are also a lot of other genetic diseases in the Ashkenazi group. This was a huge surprise because nobody in my family ever heard anything about anyone being Jewish. It must have been someone who married and converted to Luteranism, because both sides of that family are from Sweden and everyone was Lutheran.

So it is kind of fun to learn about.

Nancy

I already know my great grandfather was Jewish but not which branch genetically.

So far as the family know anyway... Its not like people have to even convert since its done for them... especially because of the maternal requirement...so I doubt its anywhere as uncommon than we think...

I do think its fun though....

[hathor]

Might I suggest your husband going gluten-free for a period of time & see how he feels. There are so many symptoms for gluten intolerance; he just may not be aware of what it is doing to him because, to him, this is how he always feels. I remember getting my Enterolab result back for soy. I never noticed any reaction from soy. I went off it and a few things changed for the better.

If he is unwillling to do that, he could get the gluten intolerance testing from Enterolab and see if he is creating the antibodies and has any malabsorption. If he doesn't test as showing intolerance, then there would be no reason for him to go gluten-free. Practically everyone in the US either has celiac or intolerance genes.

[DebW]

Thanks so much to everyone who replied -- I have some info from other listservs and sources, too, and I'll post it here when I put together the summary. (So watch for those links, GTP. ) The double DQ1 combo is actually quite interesting...

To Confused, I'm next for the genetic testing. We know I have at least one gene for gluten sensitivity since my son was double gened, and that's no shock at all. I have a whole laundry list of chronic and severe symptoms that disappeared when I stopped eating gluten. We'll eventually get everyone tested, but we figure that if I show up as double-gened as well, then we'll know all our children are, too. (Since my husband has the double, too.) My daughters both had intense symptoms which cleared in the absence of gluten as well.

To Hathor, my husband's going to go gluten-free anyway. Since he's double-gened, he doesn't want to take the risk, and frankly, since we have a gluten-free household already, and he was only eating gluten occasionally at work, this is not a major change for him -- just a little more dedication. He hasn't noticed a lot of symptoms, but that's primarily because he was looking at gastro symptoms and not the neurological ones. Now that he's considering that angle, he's realized that he had started to automatically avoid all carbs on days he wanted to be particularly alert to avoid the "brain fog" and he has some peripheral neuropathy issues as well.

Nantzie, thanks so much for sharing your symptoms and experience with this type -- it helped us a lot ! Now that we're understanding that the gastro angle is only one manifestation, this is becoming much clearer.

Cheers,

Deb