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Does Dq8 Positive=Celiac For Certain?


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#1 Glutens gotta go

 
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Posted 11 May 2014 - 10:11 AM

I have had symptoms that could be linked to gluten intolerance for years now. i am 32 now, but my first sign, constipation, started in my early 20s.  Finally, out of desperation i recently decided to get tested. Quite frankly, i assumed that the doctor would likely just tell me that i was gluten sensitive, tell me to cut it from my diet ect. As it turns out he did A Lot of blood work. I am very deficient in ferritin & vitamin D, my thyroid is very low, high leptin along with a positive DQ8 test. The doctor i see finds the gene test as proof enough to remove all gluten from my diet. He said that i most likely have Celiac, and since the other more definitive tests are difficult to get a black and white diagnosis that i should basically take the gene test as the only proof i need. 

what are your thoughts? is the DQ8 gene enough proof for you? would further testing change anything about my future/diet?


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#2 kareng

 
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Posted 11 May 2014 - 10:16 AM

30% of the population have genes for celiac but only about 1% have Celiac. While DQ 8 is rarer, it does not mean you have Celiac. I don't understand why he would do an expensive genetic test and miss the regular Celiac blood work? They are quite accurate . Perhaps you need to print off some info for the doctor from The Univ of Chciago Celiac Center?
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#3 BlessedMommy

 
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Posted 11 May 2014 - 10:17 AM

Welcome to the board!

 

No, I would not take a positive gene test as a definitive answer.

 

Since you are still eating gluten, I would suggest getting your doctor to order the full celiac panel blood test. It's important to do it now, as after you've been gluten free for awhile the results will be negative, regardless of whether you're celiac or not, since it measures the gluten antibodies in your blood.


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#4 cyclinglady

 
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Posted 11 May 2014 - 02:55 PM

Here is the link to U of C:

http://www.curecelia...uide/factsheets

A gene test is not really worthless but is typically used to help diagnosis (or exclude) when the other celiac tests have been done. Your doctor skipped some critical tests. I would find another doctor. If you change your diet now, you'll never really know if you have celiac disease. A firm diagnosis comes in handy getting medical support in the future (i.e. Bone scans, etc.) Plus, doctors will be prone to testing your kids if you have celiac disease. I am properly diagnosed, but my husband went gluten-free 13 years ago based on input from two doctors. He wishes he was properly diagnosed!
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#5 psawyer

 
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Posted 11 May 2014 - 06:51 PM

The gene test, alone, means nothing. As previous posts said, the gene is common, but celiac disease is present in only a small fraction of those with the US-recognized genes. In Europe, there are doctors who will diagnose celiac disease with neither DQ2 nor DQ8. The AMA has not yet arrived there.
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#6 Glutens gotta go

 
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Posted 12 May 2014 - 11:42 AM

THANKS to all for your input. I am just trying to find my way in this new,foreign world. Just to verify that i didnt overlook "antibody" testing i did call my doc. For some reason, they said that they will do it, upon request and pre-payment.  I dont really understand why they didnt do it with all the other testing.  Plus, i have been off gluten for 4 weeks. 

I am so confused and just seem to feel progressively worse and worse. I have a headache Every single day. I dont know  what to do next.


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#7 BlessedMommy

 
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Posted 12 May 2014 - 12:00 PM

I'm sorry that you got misleading advice from the doctor. You do need to be eating gluten in order to get accurate antibody testing.


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