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Is Dq8 A Death Sentence?

jasonD2

By jasonD2
in Coping with Celiac Disease

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jasonD2 Experienced
jasonD2
Posted

i found out that the celiac gene i have is Dq8 - i read it is the rare gene and can also predispose you to other autoimmune diseases. Am i basically screwed no matter what? i could already have another autoimmune disease and not even know it - i cant handle this!

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darlindeb25 Collaborator
darlindeb25
Posted

You are so dramatic! :lol:

All kidding aside, DQ8 is rarer than DQ2, but not rare. DQ2 and 8 are the two genes they say a person must have to be diagnosed celiac...yet, you can carry these two genes, separately, together, or doubled and never develop celiac. Also, these are not the only genes which can cause autoimmune diseases. I have an autoimmune disease, and I am double DQ1.

Another thing I often wonder about, my sister was diagnosed celiac 9 years ago from flattened villi. Our dad did not have flattened villi, yet is gluten intolerant. I had the gene testing done, and have two DQ1 genes, which means, both of our parents have at least one DQ1 gene. Our dad isn't a celiac, and has one DQ1, our mom is not gluten intolerant, and has at least one DQ1 gene...so, what are the odds my sister has DQ2 or 8 genes? Slim, to none? DQ1 genes are considered gluten intolerant and neuropathy genes...now that's a double whammy, wouldn't you think?

Jason, there are much worse diseases and syndromes to deal with other than celiac disease. Celiac has a RX with rare side effects, if you go gluten free. Many celiacs are very healthy, once they remove gluten from their lives. My sister does great, she is a great cook, and even her family often prefers her gluten free food. If you go gluten free, many of your other symptons may disappear, or may not...there is not "for sure" answer until you change your lifestyle, and find out what happens.

I went undiagnosed for so many years...I was actively ill because of gluten for over 20 years, that we know of, how many years before that, we are not sure. I developed a Vit B12 deficiency, which caused my gluten ataxia, sensory and axonal neuropathy, and aids in my CFS problems. My neuropathy is showing slight improvement and I have been taking B12 for nearly 5 years. I also have a Vit D deficiency, which is finally improving, along with a ferritin deficiency.

Go gluten free and start thinking about getting better. You can do it!

Jestgar Rising Star
Jestgar
Posted

The HLA genes are associated, not causative. You could have none of the predisposing genes for autoimmune diseases.

jasonD2 Experienced
jasonD2
Posted
  • Author

Thanks for the info- and yes i live for the drama sometimes ;-)

mysecretcurse Contributor
mysecretcurse
Posted

Hmm I don't know anything about gene's and testing, all I know is my body thrives and becomes very healthy and beautiful when I follow an allergen free diet. Don't stress, it's the worst thing for you!

Mtndog Collaborator
Mtndog
Posted

All I have to say is THERE IS NO WAY I'M DYING just because I have DQ8......unless that's 8 sundaes from Dairy Queen!

Now take a deep breath and repeat after me "My genes cannnot kill me, my genes cannot kill me" :P

jerseyangel Proficient
jerseyangel
Posted
All I have to say is THERE IS NO WAY I'M DYING just because I have DQ8......unless that's 8 sundaes from Dairy Queen!

Now take a deep breath and repeat after me "My genes cannnot kill me, my genes cannot kill me" :P

:D I'll chime in about my DQ2 also--nope, not gonna get me!

Seriously, Jason--don't worry about your DQ8, just be as gluten-free as you can and try to relax and enjoy. ;) I have many intolerances too and sometimes it gets old but I focus on what I can have. Once you "own" this thing and are comfortable with what you need to do, it gets so much easier. :D

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jasonD2 Experienced
jasonD2
Posted
  • Author

Gracias all

I noticed on my report that it says DQ8 (DQA1 03XXm, DQB1 0302) and that the doc wrote down heterozygote/carrier/50% prob

does this mean i inherited one allele from each parent?

mommida Enthusiast
mommida
Posted

Well....

When we were goint through the testing. (What a waste of time nightmare.)

My daughter's genetic test came back DQ2 and DQ8 positive. My test came back negative, negative for anything Celiac related.

Being that this is my biological daughter, I had to ask if we even matched as mother to daughter. Prometheus labs would not comment, would not do the test over again, and then they explained statistically how INACCURATE the genetic testing is. 30% human error rate, genetic mutation, and falling into the 2% zone of missed genes ( because at that time the test was supposed to be 98% accurate. (Insurance didn't cover all of the amount and we payed a lot of money for not a lot of answers, just more questions. <_< )

I did some research into really off the wall genetic issues such as fetalmaternal microchimerism and diagnosed chimeras with no visible characteristics.

So to wrap up this rambling, live your life and don't take this genetic test too serious. As it is not a certain direction for anything in your life. :D

JennyC Enthusiast
JennyC
Posted

I'm HLA-DQ 08 (0302) and 02 and I do not even have celiac disease, my son does. (But it's quite obvious where he got the gene! :blink: ) I don't have any autoimmune issues at this time, but I do experience intense inflammation very easily. It's not a death sentence. Just be sure to listen to your body.

heathen Apprentice
heathen
Posted

it's really important to remember that the genetics we know about are just PREDISPOSITIONS! there are Celiacs who don't have any of the known genes and plenty of people who have them without Celiac Disease. Like most things, Celiac is a combo of genes and some environmental factor (illness, exposure, etc) we haven't figured out yet. While you are technically your genes, YOU ARE NOT YOUR GENES. further, DO NOT BE DEFINED BY A DIAGNOSIS!!!!

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