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Genetic Testing


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10 replies to this topic

#1 Mary5757

 
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Posted 08 November 2012 - 08:07 PM

Anyone done genetic testing for celiac? My daughter has it and I'd like to have my son tested to see if he has the gene. My insurance doesn't cover it. How expensive is it? Is there an at home kit? Any experiences with it?
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#2 taxlady23

 
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Posted 08 November 2012 - 08:43 PM

Anyone done genetic testing for celiac? My daughter has it and I'd like to have my son tested to see if he has the gene. My insurance doesn't cover it. How expensive is it? Is there an at home kit? Any experiences with it?

My son had genetic testing done for celiacs. Our insurance did cover it, but it couldn't be done at a regular lab, we had to go to the hospital lab that does the prometheus test for celiac.
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#3 cassP

 
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Posted 08 November 2012 - 08:51 PM

i did genetic testing thru enterolab .. it was about 150$ im happy i spent the money!
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#4 1974girl

 
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Posted 14 November 2012 - 08:33 AM

If it would make a difference then do it. They did it on both my girls to try rule it out. It ruled it in. But.... Even though I know my younger dd has dq 2 I am still not gluten-free with her. 30% of the population has it, too. My celiac dd has both 2 and 8 so we are gluten-free with her despite no gi symptoms.
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#5 ravenwoodglass

 
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Posted 14 November 2012 - 09:44 AM

I found it interesting. My DD, who was both biopsy and blood work positive, had her's done and was told she didn't have the genes. Thus they said her diagnosis was a false diagnosis. I then had my genes tested. Turns out I don't have either one of the two most commonly tested for celiac associated genes either. I have a double dose of a gene that is recognized in other countries but not in the US. So if you want to have the testing done have it done but know that it can not fully rule out celiac if the gene tests are not positive for DQ2 or DQ8.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 Celiac Mindwarp

 
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Posted 14 November 2012 - 09:53 AM

ravenwoodglass

Can you tell us more about the double gene?

My GI took bloods for genetic testing Monday, so I want to be ready in case it is negative. I am not sure which tests are done in the UK, but he was very clear his view is no genes no celiac.

He was very helpful and listened. I am always up for educating a doctor if necessary :)

Thanks
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#7 1desperateladysaved

 
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Posted 14 November 2012 - 01:05 PM

I had a genetic test from a lab in Sweetwater, Texas. I was very satisfied with the results and information they provided me with. I had both 2 DQ2 snf 2 DQ8. I was told that all of my children were therefore carriers of the genes. I also discovered that both of my parents have the genes. Most people could probably not discover all of that from the one test. I had 4/4 gene alleles for gluten intolerance. The cost was under 400 dollars and involved swabbing some cells from the cheeks with cotton swab, filling out paperwork and mailing it back to the lab. The genetic test plus my symptoms were used by my MD for diagnosis. ***
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#8 MoMof2Boyz

 
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Posted 16 November 2012 - 03:51 PM

I was told that since my ds tested negative for DQ2 an DQ8 that there is NO chance he can have celiac. hmmmmm...
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#9 jerseyangel

 
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Posted 16 November 2012 - 04:13 PM

I had the genetic test, ordered by my gastro. Insurance paid for it.
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#10 Cara in Boston

 
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Posted 17 November 2012 - 01:16 PM

We had the test and based on the result, it led our original doctor to believe that my son did NOT have it. After we switched doctors and they did an endoscopy, he was found to be very positive. People with the genes don't always get it. People without the genes do get it. I'm not really sure how a test like that can be helpful.

Cara
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#11 shadowicewolf

 
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Posted 17 November 2012 - 02:42 PM

not nessisarily. The doctors in the U.S. only test for those two. I've heard that outside of the States they test for more.
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