Help Me, Enterolab Results

[janelyb]

Ok I have read all the information but am still a bit confused on my son's genetic results from enterolab. This means he is not celiac or does this mean this is one of the genes not yet offically recognised celiac. Can I still continue to treat him as tho he is truely celiac?

here's what the results are:

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0301

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

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.

[AndreaB]

He can still be totally gluten free. They don't have all the genes narrowed down yet. DQ2 and DQ8 are the primary celiac genes, but I've heard of a DQ1 on this site being biopsy diagnosed as well as reading something about some DQ7's being diagnosed before.

If he has a reaction to gluten he needs to be off of it.

[confused]

Did you only do the gene test. I am someone that has dq7 and i am celiac threw blood work, i refused the biopsy.

paula

[janelyb]

Did you only do the gene test. I am someone that has dq7 and i am celiac threw blood work, i refused the biopsy.

paula

Yep only the gene test because we already had blood tests with Quest lab(our health insurence lab) and the results are inconclusive or really questionable between our 2 doctors. Only his IgG is + all other negative through our health insur lab.

I am just really wondering if there is anyone else out there who has the DQ 3,3 (subtype 7,7).

Can someone explain in easy terms what exactally does the subtype 7,7 mean?

I called enterolab and spoke with the nurse and somewhat understand but don't really understand it fully to explain it to other family.

I truely feel my son is celiac and I really don't need a test to confirm but my husband on the otherhand does need confirmation on paper.

[Rachel--24]

I have DQ1 and DQ3.

DQ3 isnt a "known" Celiac gene. They have not identified all of the genes at this time...I know there are some diagnosed Celiacs with DQ1...but at this time only DQ2 and DQ8 are recognized Celiac genes.

Can I still continue to treat him as tho he is truely celiac?

Of course you can! I consider myself to be non-celiac gluten intoletrant...but I still follow the diet as if I were Celiac.

The important thing is that he achieves wellness from the diet...so if its working...I cant imagine why anyone would want to take him off the diet...celiac diagnosis or not.

If he continues to be symptomatic even after having been gluten-free for some time...I would not question that he is truelly sensitive to gluten...but I would look into other causes which may be contrinuting to symptoms.

[confused]

Yep only the gene test because we already had blood tests with Quest lab(our health insurence lab) and the results are inconclusive or really questionable between our 2 doctors. Only his IgG is + all other negative through our health insur lab.

I am just really wondering if there is anyone else out there who has the DQ 3,3 (subtype 7,7).

Can someone explain in easy terms what exactally does the subtype 7,7 mean?

I called enterolab and spoke with the nurse and somewhat understand but don't really understand it fully to explain it to other family.

I truely feel my son is celiac and I really don't need a test to confirm but my husband on the otherhand does need confirmation on paper.

When my son had the celiac panel he only was positive also for the IgG, so then we did the enterolab testing and he came back postitive for everything but malabsorption, but he does have the dq2 gene. We dont want to put him back on gluten and he does not want to go back on gluten. He is not doctor diagnosed as celiac, but in our hearts and mind we know that he is celiac. We are now doing allergy testing tho to see if its not something else. We also are trying to get in with dr lewey, to make sure we are barking up the right tree. But we are hoping he agrees with us and just says he is celiac and not want to do the biopsy.

Have you ever had ur son allergy tested. maybe that could be your next step.

paula

[janelyb]

When my son had the celiac panel he only was positive also for the IgG, so then we did the enterolab testing and he came back postitive for everything but malabsorption, but he does have the dq2 gene. We dont want to put him back on gluten and he does not want to go back on gluten. He is not doctor diagnosed as celiac, but in our hearts and mind we know that he is celiac. We are now doing allergy testing tho to see if its not something else. We also are trying to get in with dr lewey, to make sure we are barking up the right tree. But we are hoping he agrees with us and just says he is celiac and not want to do the biopsy.

Have you ever had ur son allergy tested. maybe that could be your next step.

paula

yes we have. neg blood food panel and neg to the skin test for food. We didn't do air born/plants on skin test and i don't care too either, he doesn't show any sinus allergies symtoms.

[janelyb]

The important thing is that he achieves wellness from the diet...so if its working...I cant imagine why anyone would want to take him off the diet...celiac diagnosis or not.

our pedi GI said at our last appt (before I did this enterolab test) that he could go back on gluten because he oviously is not allergic or having an issue with it. This was only being on the diet for 4-6 weeks and actually later I found out a cereal he was eatting had oat flour in it so at that point he truely wasn't 100% gluten-free.

If he continues to be symptomatic even after having been gluten-free for some time...I would not question that he is truelly sensitive to gluten...but I would look into other causes which may be contrinuting to symptoms.

Since we've got rid of the oat flour and then dairy he started to get better. He eats so much food (before Gluten-free Casein-free I was lucky if he'd eat some crackers a day he hardly ate at all), gaining weight.....

the only thing that has not improved much is his constipation. But that also could be because of his primary disabilty, his lack of fruit and veggie intake or maybe a reaction to something else like soy or corn?

The constipation is what has lead me to where we are now......the gluten issues. Gosh if only we could have figured it out years ago when it all started at 7 months old (when solids were introduced), poor thing he's nearly 4 now.