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Mary5757

Genetic Testing

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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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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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i did genetic testing thru enterolab .. it was about 150$ im happy i spent the money!


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 :(

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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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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.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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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


- 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 hidsmile2t.gif

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


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

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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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