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Gene Test Question

1974girl

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1974girl Enthusiast
1974girl
Posted

Question:

1) Daughter #1 has celiac (biospy and blood confirmed) She is DQ2/DQ8.

Daughter #2 is DQ2/DQ2

Is Double DQ2 at a greater risk? She is missing the antiendomysial antibody that her big sister has but shows slight elevations in Ttg. They just say retest her in 6 months. Can you have celiac without that positive antibody showing? Is double DQ even worse than DQ2/DQ8?

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mommida Enthusiast
mommida
Posted

Sorry, you really only have to have one Celiac gene to have Celiac.

I think 30% of Celiacs can be IGA deficient. That is why a full test panel will have a total IGA count, to make sure the individual even has IGA.

A carrier of 2 Celiac genes, seems to be more sensitive with a stronger reaction to a smaller amount of gluten.

My daughter has DQ2 and DQ8 genes, Celiac, and Eosinophilic Esophagitus. (Maybe that is where the connection to Celiac and EE is from? DQ2 and DQ8?

Takala Enthusiast
Takala
Posted

Yes, but remember, you can have the genes and not develop the disease, the majority of people do not, so far. But having close relatives with it increases statistical risk. Wonder if this will change in the future, as the rate of celiac and gluten intolerance in the general population is rising.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Question:

1) Daughter #1 has celiac (biospy and blood confirmed) She is DQ2/DQ8.

Daughter #2 is DQ2/DQ2

Is Double DQ2 at a greater risk? She is missing the antiendomysial antibody that her big sister has but shows slight elevations in Ttg. They just say retest her in 6 months. Can you have celiac without that positive antibody showing? Is double DQ even worse than DQ2/DQ8?

A double DQ2 means she got one DQ2 from each parent. That's all it takes to be genetically inclined to get Celiac.

Skylark Collaborator
Skylark
Posted

Is Double DQ2 at a greater risk? She is missing the antiendomysial antibody that her big sister has but shows slight elevations in Ttg. They just say retest her in 6 months. Can you have celiac without that positive antibody showing? Is double DQ even worse than DQ2/DQ8?

The risk depends whether it's DQ2.2 or DQ2.5. Either way she needs a biopsy. You can be celiac with just positive TTG and it's harder to get positive antibody tests in kids.

pricklypear1971 Community Regular
pricklypear1971
Posted

Let's not forget us halfies!

You want to know the funny thing about knowing the genes??? I'm the one with issues but we found out hubs carries at least half a dq2, also (but different than mine) because it showed up in son's test.

And his half a dq2 put him statistically at higher risk than me with my two half copies (dq2, dq8).

Go figure.

So, it's nice to know if you have the genes but beyond helping you screen the family and convince an md ive found its rather useless info (but it does explain a few things, doesn't it?).

Maybe it will be more useful in the future?

Gemini Experienced
Gemini
Posted

Question:

1) Daughter #1 has celiac (biospy and blood confirmed) She is DQ2/DQ8.

Daughter #2 is DQ2/DQ2

Is Double DQ2 at a greater risk? She is missing the antiendomysial antibody that her big sister has but shows slight elevations in Ttg. They just say retest her in 6 months. Can you have celiac without that positive antibody showing? Is double DQ even worse than DQ2/DQ8?

Yes, having a double gene usually indicates that if you trigger for Celiac, then you will have a more severe case and be extremely sensitive to gluten. I tend to believe the research because I have a double DQ2 and nearly died from this disease. As they say, I got it bad! :o

The fact that your daughter has slight elevation in tTg and isn't showing on the EMA could most likely mean she has triggered but hasn't been reacting long enough to show a positive EMA. It takes some time to show positive on all counts on a Celiac panel. That would be enough for me to out her on a gluten-free diet, especially with a diagnosed sibling. I don't think there is any other disease where people are made to jump through so many hoops for a diagnosis.

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  • 2 weeks later...
sce2012 Newbie
sce2012
Posted

I am double DQ as well...Gemini, how long did it take you to heal?

sce2012 Newbie
sce2012
Posted

I meant double DQ2! DQ2 homozygous

nora-n Rookie
nora-n
Posted

"slight elevations in Ttg"

What were the numbers? And what was the total IgA?

The EMA is a IgA type test only, by the way

The Ttg is not often positive with patchy celiac, the most common form of celiac nowadays. It may be positive only in about 30-40% of cases of patchy celiac.

For patchy celiac, and early celiac, they have developed the deamidated gliadin test.

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