My Enterolab Genetic Results

[carrielynn]

I got my Enterolab genetic results and, like many people here, am confused.

Here they are (drumroll....)

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Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6)

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My husband and I both got genetically tested because our son was diagnosed as celiac by a nutritionist. My husband and I both went completely gluten-free, as strict as we possibly could. I was strictly gluten-free for two months and felt no different. (Don't get me wrong, I've got some health issues, but they stayed the same when I was gluten-free and when I wasn't.) My husband did feel differently pretty quickly and noticed improvement. His Enterolab results show that he has a celiac gene.

The nutritionist told me that I need to go gluten-free anyway. After reading the Enterolab site, it seems that their opinnion is the whole US population should go gluten-free because we all have gluten sensitive genes. So my skeptic hat is on... my husband does need to go gluten-free, we've discovered. But must I also? I'm willing to give it another shot, but frankly if I notice no improvement, then it's more of a hassle for me.

[Ursa Major]

To my limited understanding, it looks to me like you have one celiac disease gene, and one gluten-sensitivity gene, and should be gluten-free.

You might not feel any different gluten-free, because you might need to eliminate dairy as well before you do (and possibly soy or other things as well). There are many people with celiac disease who don't have any obvious symptoms, while their villi are destroyed. I am not saying that is the case with you, but it is possible.

[e&j0304]

I'm no expert on this, but I do know that just because you have the genes doesn't mean that you are gluten intolerant. You may become gluten intolerant in the future if you aren't already, but you may not. Without seeing if your stool sample picked up a gluten sensitivity it's hard to tell. I'm assuming you didn't have that part of the test run? I am also a little skeptical of enterolab mainly because he hasn't gotten around to publishing his work and he has been saying for too long now that he is "in the process of publishing." I really don't know if I believe in him 100% but that's just my own personal opinion. We did have both of my kids tested through enterolab.

If you want to do the diet, I would give it a few months or so and see how you feel then decide. You have to be really strict with it though. We have both of my kids gluten free right now, but my dh and I are not.

I hope you are able to figure it all out and get feeling well soon!

Shannon

[happygirl]

What did the interpretation say? Did it say you have a celiac gene or gluten sensitive genes? Can you post it?

How I read it, you have gluten sensitive genes, not celiac genes.

Open Original Shared Link (info below in italics is from this site)

DQ3 is split into DQ7, DQ8, and DQ9, but allele retain DQB1*03.

--DQ7 = DQB1*0301 (or very similar alleles)

DQ1 is 'split' into DQ5 and DQ6, in this case the DQB1 alleles start with

--DQ6 encoded by by alleles that start with DQB1*06

You have DQ 6 and 7, which are subtypes of 3 and 1.

Those are not Celiac genes (which are DQ2 and DQ 8)

(DQ8 is DQB1*0302 and is a subtype of DQ3. DQ2 is DQB1*02XX)

I hope this helps clear up some of the confusion. Just having any of the genes does not mean you should necessarily be gluten free. It is a personal decision. Over 30% of the general population has one/both of the Celiac genes, but only 1 in 133 has Celiac. So, JUST having the gene does NOT mean you have it.

Although the research is much more limited on gluten sensitivity, the same theory applies.

All this being said---if you feel better off gluten, GO FOR IT! Going gluten free gave me my life back. As others on here like to say, you don't need a diagnosis not to eat gluten. That being said, again , not everyone has a problem with gluten. Genes only play a small role in all of this.

[Guest nini]

I don't know enough about Enterolab's gene testing to have an opinion on that... I do believe that gluten is toxic for everyone, but in what proportions? But that's just me.

My advice would be for you to be 100% gluten-free at home for your child and husband... make it easier for them, but if you want to eat gluten when you aren't at home then I guess that would be your business and if you aren't noticing any positive dietary results from being gluten-free, well, either you aren't gluten intolerant, or, you also have other intolerances, or it may take you longer to notice any improvement... (lot of help I am, huh?)

[carrielynn]

Thanks everyone for all the suggestions and thoughts.

The interpretation on my Enterolab report said:

"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."

So I'm not ruling anything out and I should get the stool sample test and probably the blood tests too just to see what they say. I just know that my husband felt better pretty quickly and I felt no different after two months of strict gluten-free. We're mostly gluten-free at home... we've got a shelf of non-gluten-free stuff, but my son and my husband know not to touch anything there.

Thanks again!

[happygirl]

carrie,

just so you know, based on your genes, you almost definitely do not have celiac, so the bloodwork would be near useless. traditional celiac bloodwork only can diagnose celiac, not gluten sensitivity.

there are some (2-3%?) of Celiacs that don't have the genes, but, the vast majority do.

you might not be affected by gluten...sounds like it is your husbands genetics that your son is getting it from, if they are both the 'afflicted' ones.

we live in a non-gluten free home, and keep things separate and very careful. everyone figures out what works for their family. somethings are just naturally gluten free and that makes it easier for meals (say, tacos!)

hope this helps

Laura

[diamondheart]

just so you know, based on your genes, you almost definitely do not have celiac, so the bloodwork would be near useless. traditional celiac bloodwork only can diagnose celiac, not gluten sensitivity.

there are some (2-3%?) of Celiacs that don't have the genes, but, the vast majority do.

you might not be affected by gluten...sounds like it is your husbands genetics that your son is getting it from, if they are both the 'afflicted' ones.

Laura

I know of other people with the DQ1 (Subtype 6) gene that have problems with gluten. I have two identical copies of DQ1 (Subtype 5), and I'm in the gluten sensitive category. I have mood problems when I get glutened now, mainly depression. I also seem to get the digestive problems too. So, you may or may not be gluten sensitive. I didn't really notice all my symptoms go away until I cut out other foods I was reacting to, including dairy, soy, nuts, corn, and quinoa. Are you having symptoms or just don't feel any differently off the gluten?

Some additional IgA (stool) or IgG (blood) testing might give you some answers, but if you have been gluten free for a while, the IgG antibodies might not show up in your blood. Also, if you are IgA deficient, then the stool samples will be meaningless.

Check out Open Original Shared Link for more information on celiac disease vs. gluten sensitivity and diagnostic testing ("Not Celiac?"). Also, read the story about the website creator's family. Both her and her daughter are DQ 1,1 (Subtype 6,6).

Claire

[happygirl]

I hope that one day, "they" will shed more light on non-Celiac gluten intolerance. I really think they are missing a big part of the picture. One day we will look back and say, "Told ya so!" to all the doctors

A girl can dream, right?