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Would You Pay For Genetic Testing At This Point?


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10 replies to this topic

#1 birdie22

 
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Posted 16 October 2012 - 11:56 AM

Diagnosed NCGS. Had full celiac panel done 11mo ago and all was negative. Had positive response to gluten-free diet. Been gluten-free ever since. I have 2 daughters. Both are tiny (as am I), one has constipation issues for sure. My dad was tested for celiac back in the late 80s or early 90s. Result was negative. My mom is pursuing testing because she had a rock bottom B12 and D levels last month and suffers from depression, fatigue, leg aches, etc. I had a follow appt with my doctor today and requested genetic testing. She wouldn't do it. Said it's useless info and that I'm best to do an elimination diet with my kids if I'm concerned (their pediatrician is aware of my diagnosis but hasn't tested girls because they are so young..5 and 2yo).

I'm located in NY. I know I could pay for genetic testing via enterolab and perhaps others. If you were me would you bother? I inquired because I think it would be a helpful piece of the puzzle. If I have genes then a)perhaps I'm a seronegative celiac instead of NCGS and b)if I have genes then I'm more likely to closely monitor and test my daughters. Is that faulty thinking on my part??
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Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

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#2 shadowicewolf

 
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Posted 16 October 2012 - 12:24 PM

Mine was ordered by my GI doc and my insurance covered it.

I think it would be a good idea, considering your family.
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#3 ravenwoodglass

 
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Posted 16 October 2012 - 01:44 PM

Do keep in mind that usually doctors only check for the two most common celiac associated genes. Just because you might not have those genes doesn't mean you might not be celiac. Also Enterolab testing, last I read, is not available to people living in NY. I was lucky and got my gene testing done through them before NY outlawed it.
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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)

#4 anabananakins

 
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Posted 16 October 2012 - 03:19 PM

Do keep in mind that usually doctors only check for the two most common celiac associated genes. Just because you might not have those genes doesn't mean you might not be celiac. Also Enterolab testing, last I read, is not available to people living in NY. I was lucky and got my gene testing done through them before NY outlawed it.



Yes, I had the genetic testing and it was negative and I'd tested negative twice to the celiac panel so that was the end of the road formal diagnosis wise for me. Doesn't change the fast that I am extremely intolerant to gluten and I can see that so are other family members. It would've been nice to have those genes so I could get them to go gluten free.

If you can comfortably afford it and are curious then go for it but for me it was really frustrating to have yet another definitive 'no you don't have celiac' strike when I know that I can't touch the stuff. I would've been annoyed if i'd paid for it.
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#5 birdie22

 
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Posted 16 October 2012 - 03:24 PM

Thanks for letting me know about the issue of being in NY. Looks like a doc needs to order it in my lovely state. So, I guess it doesn't matter unless I want to shop around for a new doc and find one willing to order it. Bummer.
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Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

#6 IrishHeart

 
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Posted 16 October 2012 - 04:00 PM

Some NY docs will do a stool test via Prometheus for gene testing and it is covered by insurance.

Maybe your doc will do it?
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#7 birdie22

 
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Posted 16 October 2012 - 04:42 PM

Some NY docs will do a stool test via Prometheus for gene testing and it is covered by insurance.

Maybe your doc will do it?


I don't think so. She doesn't see the value. It appears that Kimball would do it but would send the results to my doc and I'd need to request a copy from the doc. Pretty sure that's the fastest way to piss off the doc LOL. My mom has a follow up with the doc (we have the same primary care doc) in November to follow up on her bottomed out B12 and I'm pretty sure I have mom convinced to demand celiac testing. Maybe I'll wait to see how that goes before deciding to shop around for another doc.
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Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

#8 Lisa

 
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Posted 16 October 2012 - 04:55 PM

You may find this of interest:

http://www.uchospita.../uch_007936.pdf
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#9 GottaSki

 
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Posted 16 October 2012 - 07:41 PM

Perhaps your Mother's doctor will include genetic testing in her tests. Should hers be positive you would then have reason to ask your doctor again OR if hers are positive it may be enough information for your kids to be genetically tested by their pediatrician.

I was fortunate - when my kids tested negative with symptoms my celiac doc recommended that I have the genetic test. We were all grateful to know that all of my children had at least one celiac gene as it was one less "unknown" in our medical history. My children were teens/young adult when I was diagnosed so the genetic link was important in each of their decisions to pursue more testing &/or go complete a gluten-free trial.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#10 1desperateladysaved

 
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Posted 17 October 2012 - 03:00 AM

Do keep in mind that usually doctors only check for the two most common celiac associated genes. Just because you might not have those genes doesn't mean you might not be celiac. Also Enterolab testing, last I read, is not available to people living in NY. I was lucky and got my gene testing done through them before NY outlawed it.


An unnameable company that I tested with, tests for 4 gene alleles. If I have it straight, two of these are celiac and two are gluten intolerance. They also sent explanations that I could understand.
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#11 IrishHeart

 
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Posted 17 October 2012 - 05:53 AM

I don't think so. She doesn't see the value.


I do not see why she even cares one way or the other. You are paying the co-pay for the lab work and all she has to is sign the darn sheet. Geesh. It could be of value to your family.

My doc included it in the first lab work he ran on me. I did not ask for it, he just did it.


"Celiac disease (celiac disease) is a complex genetic disorder with multiple contributing genes. Linkage studies have identified several genomic regions that probably contain celiac disease susceptibility genes. The most important genetic factors identified are HLA-DQ2 and HLA-DQ8, which are necessary but not sufficient to predispose to celiac disease. The associations found in non-HLA genomewide linkage and association studies are much weaker. This might be because a large number of non-HLA genes contributes to the pathogenesis of celiac disease. Hence, the contribution of a single predisposing non-HLA gene might be quite modest. Practically all celiac disease patients carry HLA-DQ2 or HLA-DQ8, while the absence of these molecules has a negative predictive value for celiac disease close to 100%. Genetic risk profiles for celiac disease would be helpful in clinical practice for predicting disease susceptibility and progression."

found here:

http://www.ncbi.nlm....pubmed/18184122

there are others just like this one and I wonder is she would appreciate a few Pub med articles?
:)
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif





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