Results - Dq2 Postive But Dq8 Negative

[3groovygirls]

What does this mean? (Our appt isn't for another month but I got these results over the phone)

Hi everyone! My DD is 20 months old. She's been on a gluten free diet since 10 months old b/c of her extreme reactions to it. (Vomiting, diarrhea, etc) She also has FTT. So they did the genetic test since she can't have the regular test (it would be negative since she's not on gluten).

She tested postive for the DQ2 gene but not the DQ8 gene. Does this mean she has it or she doesn't?? The nurse said she was unclear. Having both means she has it, having one means lower risk. They ran the gene test since she can't be on gluten because of her failure to thrive and her extreme reaction to it. So do you think that this result means she has it?

Thanks,

LInda

[Mother of Jibril]

Hi Linda,

The genetic test can't give you a diagnosis of celiac disease, however DQ2 puts you at high risk for it. DQ8 is also considered a celiac gene, but you certainly don't need to have both of them... in fact, that can make the reaction more severe.

I have DQ8, but no official diagnosis. The conclusion I came to is that if you know you have one of these genes you should either go on a gluten-free diet or commit to periodic testing for celiac disease (since you can test positive for antibodies without symptoms). IMO, you're doing the best thing with your daughter! You're saving her from a lot of problems now and later.

[happygirl]

Your nurses interpretation is not quite accurate.

Having the genes doesn't mean anyone has Celiac. 30-40% of the American population has one or both of the genes, but only 1 in 133 (latest estimates), so less than 1% has Celiac. Genes does not equal Celiac.

However, the vast majority of those with Celiac (upwards of 95%) have one or both of the genes. The vast majority (90%+) have DQ2, and 5-8% have DQ8.

Most Celiacs do NOT have both genes.

The positive gene test means its certainly possible that she has Celiac, and is often used to help aid in a diagnosis when regular bloodtest (antibodies) isn't possible - especially in instances like yours.

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[vreyna]

I, too, need help interpreting results. Most of the literature I've found online is too technical for me to understand. I understand that it is possible to be negative, but still gluten sensitive if one or part of the genes are present. I don't know if this is my case. I tested positive for RA and it seems to better lab-wise when I'm off gluten (I've experimented

DQ2 (DQA1 0501/0505, DQB1 02XX) Negative

DQ8 (DQA1 03XX, DQB1 0302) Negative

Do both A1 and B1 have to be present to be gluten-sensitive?

Thanks, Veronica

[Mother of Jibril]

I, too, need help interpreting results. Most of the literature I've found online is too technical for me to understand. I understand that it is possible to be negative, but still gluten sensitive if one or part of the genes are present. I don't know if this is my case. I tested positive for RA and it seems to better lab-wise when I'm off gluten (I've experimented

DQ2 (DQA1 0501/0505, DQB1 02XX) Negative

DQ8 (DQA1 03XX, DQB1 0302) Negative

Do both A1 and B1 have to be present to be gluten-sensitive?

Thanks, Veronica

Hi Veronica,

The DQ genes are made of two parts, alpha (A1) and beta (B1). These tend to come in particular pairs. For example, A1*0501 comes with B1*0201 to form the highest-risk celiac gene DQ2.5. In the recent past, A1*0505 was also considered to be a DQ2 alpha gene, but is now considered part of DQ7.5 (which, even if you don't have DQ2 or DQ8 still puts you at somewhat of a risk for celiac disease). The only DQs that are NOT considered gluten-sensitive are the DQ4 genes.

Rheumatoid arthritis is most closely associated with the subtypes DQ7 and DQ8. Both of these are gluten-sensitive, but DQ8 is higher risk for developing full-blown celiac disease (where your villi are being visibly damaged by an autoimmune reaction to gluten). RA is also strongly associated with HLA-DR4 (another part of chromosome 6), which tends to occur in combination with DQ7 and DQ8.

Keep in mind that you can have these genes without getting the associated disorders. I have both DQ7 and DQ8, but as far as I know I don't have rheumatoid arthritis.

I have no doubt that you are gluten sensitive! You made a smart decision by listening to your body and staying off of it. Some people think that gluten intolerance is the root cause of all autoimmune disorders... the research has been leading in that direction.

[vreyna]

Thanks for the quick response! So let me see if I understand:

Because I have half the pair of two potential celiac genes (and the 505 that also indicates RA), this makes me gluten sensitive? Is this correct?

It is encouraging to hear about the research link to gluten and autoimmune. It makes sense to me, but my RA doctor is having issues "embracing" the idea. That's why I experiment to provide proof via my labs. He gave me 2 months more to get back off gluten/dairy and retest again, before he puts me on plaquanil. I caught it early with early testing (my sisters and mom have RA, too), so I'm doing my best to stay off the RA meds!

You wouldn't happen to have links to any of this research, or could point me to journals that might have this recent research?

Thanks again! Veronica

[3groovygirls]

Thanks so much for the information everyone!

I'm REALLY confused as to why her GI Dr. said that she had to have both genes in order to have it. EVERYTHING I read both here and online says no, you only need one gene and DQ2 is the most common one by far.

So what do I do if he says she does NOT have Celiacs when she has all the symptoms, FTT and is gene positive. Go get a 2nd opinion?? How odd that he would say she doesn't have it. (Keep in mind I haven't talked to him yet, I'm just going off what he told me and what the nurse said on the phone)

[nora-n]

3groovygirls, the nurse or anyone is wrong if they say one has to have both genes to have celiac.

I have actually read another posting about a gastroenterologist who told some parents the same nonsense, that one has to have both genes .

Genes are all a bout risk.

If one has a DQ2 gene, one has a much higher risk of being or becoming celiac, that is all.

A little bit less with DQ8.

One can have double DQ2, and any of the possible combinations, and the scientists even have figured out exactly how great the risk is, there are charts somewhere.

Veronica, your test results only say you are negative for DQ2 or DQ8. The test results did not say what genes you actually have.

many people order an enterolab gene test because they will tell you which genes you have (well, only the beta chains)

Everyone has alpha and beta chains, two of each, for the DQ.

nora

[vreyna]

thanks for everyone's help and clarification!

[Mother of Jibril]

Here are two articles about links between rheumatoid arthritis and gluten intolerance:

https://www.celiac.com/articles/85/1/Arthri...ease/Page1.html

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