Genetic Testing - Double Dq8 - Anyone Else Have The Double?

[GFinMN]

just got my genetic test results back from the mayo clinic. double DQ8. the doc thinks that is causing me to be an extremely sensitive celiac, more than most. does anyone else have the double? does it really make a difference? i'm new to this genetic stuff and don't totally understand it.

thanks.

[gfpaperdoll]

oh wow, I have never heard of anyone being double DQ8. Most people seem to have a DQ2 & a DQ8 or DQ2 & a DQ1, or DQ8 & DQ3, etc, in other words either one of the gluten genes & one of the gluten intolerant genes, or one of each of the gluten genes, or two gluten intolerant genes.

Those of us that are double DQ1, know that it is a bummer with a lot of neurological stuff & additional food intolerances/allergies... Most double DQ1 people I know also cannot tolerate dairy. I cannot tolerate grains...

I recently read a post by someone that was double DQ2 & it seems that they had it very bad also.

I wonder if it is having the two copies of the same gene that is so bad?????

Would you mind giving us a list of your health issues?...

[ravenwoodglass]

I am the only one in my family to have the gene test. I am not a DQ8 but am a double DQ9. In my case that double dose did seem to lead to more sensitivity than most. I would imagine a double of any gene would cause an increased sensitivity to what ever that gene predisposes us to.

[GFinMN]

yeah, i seemed to be A LOT sicker than any of the other celiacs i know. mine came on very suddenly. within one week i had tingling in hands and feet, pins and needles over entire body, unable to swallow food, major nausea. this was pre-diagnosis. first they thought i had MS or some neurological disorder, then ruled all that stuff out and finally found celiac thanks to gastro doctor. i also developed a major limp in my right leg. thankfully, all the neuro symptoms went away once i went gluten-free. however, i have been at the mayo clinic cause my stomach isn't healing and i have developed reactive-hypoglycemia. that's when the doc discovered the double DQ8. i am VERY strict with diet - don't eat out, no cross contamination, checked all hair and beauty products, yet my intestine is still inflammed according to the mayo. the doc said he has seen this happen in people with the double gene.

[gfpaperdoll]

gluten-free in MN, you might need to try going dairy free also, & for a time grain free, you might be able to add some things in later. But for now, I would play it totally safe & not eat any grains. I would also not eat soy, no one needs soy. No artificial sugar. just rethink everything that you are eating. I think that you can still get some great meals with a limited diet of meat, seafood, veggies, fruits & nuts. maybe eggs if you do not have a problem with eggs.

I know that it is difficult to change your eating habits but the rewards are so worth it.

I know you will be better soon...