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Dq2 Homozygous (Double Copies) Depressed And Scared


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6 replies to this topic

#1 PersianCeliac

 
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Posted 18 June 2012 - 09:13 AM

I am a 24 year old female my mom and aunt were recently diagnosed with celiac I had the celiac panel with my dad and both of us had only anti-gliadin IGa was elevated to I went gluten free anyway and now had the gene test. My results came that I have two copies of DQ2 on DR7 ! I have read scary articles that having two copies of DQ2 predisposes to refractory celiac and lymphoma and I am so scared, depressed and crying my eyes out. I don't have anyone to talk to everyone thinks I should even eat gluten its fine as they lack info about the disease and its complications.
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#2 squirmingitch

 
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Posted 18 June 2012 - 09:30 AM

Don't freak out! You are young & it's highly unlikely that you would have lymphoma okay? And celiac disease is not the end of the world. Eating gluten free is not bad. It's hard in the beginning to learn all the rules but really; you won't miss those gluteny things once you get used to it.

I know you're scared right now & I know you're depressed. It's okay. We've all been there. It IS frightening at first. But I promise you it gets better --- a whole lot better!

But for now, we will cry with you b/c it's okay to cry here & rant & rave & vent & be scared.

And welcome to the board!
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#3 Raven815

 
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Posted 18 June 2012 - 10:49 AM

Welcome and I am sending you lots and lots of (((hugs))).

Stay on this forum, make friends w/ wonderful, caring people and learn about this affliction. You'll feel much better.

Laura :)
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#4 Ninja

 
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Posted 18 June 2012 - 11:08 AM

I know it is scary, but it may help to remember that 30% of the population carries DQ2 but never develops Celiac disease. They've got the predisposition but still never get Celiac. Just because you've got a higher "risk* for these other issues, doesn't mean you will get them! Knowledge is power. :)

Try not to worry about what everyone else thinks - you know your body best, not them (we just have a lot of nosy, arrogant individuals in our society that like to play king a lot :lol: ).

(((hugs!!)))
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Gluten Free 2/12 

 

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#5 Skylark

 
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Posted 18 June 2012 - 11:23 AM

I am a 24 year old female my mom and aunt were recently diagnosed with celiac I had the celiac panel with my dad and both of us had only anti-gliadin IGa was elevated to I went gluten free anyway and now had the gene test. My results came that I have two copies of DQ2 on DR7 ! I have read scary articles that having two copies of DQ2 predisposes to refractory celiac and lymphoma and I am so scared, depressed and crying my eyes out. I don't have anyone to talk to everyone thinks I should even eat gluten its fine as they lack info about the disease and its complications.

Don't panic! You will be FINE on the gluten-free diet. Lymphoma and refractory celiac are rare, rare, rare. It sounds like you have read a little too selectively, mostly looking for the frightening stuff. Did you look up the actual rate of the lymphoma? The lymphoma only happens to one in 50,000, and usually in people over age 60. Nobody your age gets that cancer. Also, did you look up the articles that show celiacs who have been on the gluten-free diet for a few years have no different cancer risk than the rest of the population?

You have done exactly the right thing accepting your genetic test, family history, and anti-gliadin antibody as enough evidence to go gluten-free for life. It sounds like you don't even have many symptoms yet? That's great! The people at risk for refractory celiac are mostly the ones who have lots of autoimmune damage but still can't find the willpower to stay on the diet. Believe it or not, there are diagnosed celiacs with a positive biopsy and double-DQ2 who cheat on the diet and have a cookie, a donut, or a slice of bread every now and then! Those are the ones in danger.

If it helps you think about the incredibly low lymphoma risk, you can compare the 1 in 50,000 lymphoma risk at age 60 to the 1 in 29 breast cancer risk at ages 60-70. I bet you're not crying your eyes out because you're a woman!
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#6 PersianCeliac

 
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Posted 18 June 2012 - 08:46 PM

Thanks everyone for responding. I don't mind going gluten free, I have already gone gluten-free even before the gene results were in. However, the article I have read saus they found 68% of EATL lymphoma patients with celiac to have double copies of DQ2 and as far as I know only about 30% of all celiacs have two copies of DQ2 so 68% of lymphoma to be from this 30% seems like a big number to me !!
If go gluten free before any damage to my intestine is caused is it still possible to suddenly develop damage in the future or have refractort celiac despota being gluten-free with no prior damage ??
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#7 Skylark

 
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Posted 19 June 2012 - 11:22 AM

Thanks everyone for responding. I don't mind going gluten free, I have already gone gluten-free even before the gene results were in. However, the article I have read saus they found 68% of EATL lymphoma patients with celiac to have double copies of DQ2 and as far as I know only about 30% of all celiacs have two copies of DQ2 so 68% of lymphoma to be from this 30% seems like a big number to me !!
If go gluten free before any damage to my intestine is caused is it still possible to suddenly develop damage in the future or have refractort celiac despota being gluten-free with no prior damage ??

68% of an ultra-rare cancer is still ultra-rare. You have a better lifetime chance of getting struck by lightning than of getting EATL. Heck, you have a better chance of dying in a car accident before age 60 when the 1 in 50,000 EATL risk even kicks in. You are not assessing risk realistically and letting yourself freak out over nothing.
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