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Help Interpreting My Gene Test Please!


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#1 LJR

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Posted 23 October 2012 - 01:35 PM

Hi everyone Im new here thanks for helping. I have been gluten free for about 3 month and it has definitely changed my life but like most people I still have doubts, mainly because my doctor keeps telling me that its all in my head because the blood work shows no sign of Celiac or gluten sensitivity. Anyhow my test is listed below and my question is do I have two copies of DQ or not.

PROMETHEUS CELIAC PLUS
COMPREHENSIVE CELIAC EVALUATION (SEROLOGY AND GENETICS)

Summary Interpretation: Celiac disease unlikely. Does not preclude
development of the disease.



SEROLOGICAL MARKERS FOR CELIAC DISEASE NOT DETECTED
Celiac disease unlikely if patient is on a gluten-containing
diet and is IgA sufficient.


Assay Results RESULTS REFERENCE RANGES
-------------------------------- --------- ---------------------
Deamidated Gliadin Peptide Ab.IgG(DGP,IgG) <0.4 <4.9 EU/ml
Deamidated Gliadin Peptide Ab.IgA(DGP,IgA) 0.3 <6.1 EU/ml
Anti-Human Tissue Transglutaminase
IgA ELISA (TTG IgA) 0.1 <10.3 U/ml
Anti-Endomysial IgA IFA (EMA IgA) Negative Negative
Total Serum IgA by Nephelometry
(TOTAL IgA) 93 <3 yrs: 8-220 mg/dl
3-13 yrs: 41-395 mg/dl
>13 yrs to Adult: 44-441 mg/dl

CELIAC RISK GENES DETECTED: DQ2.2 (HLA DQA1*0201:DQB1*0202)
and other non-risk alleles.


CATEGORY# DQ GENOTYPE INCREASED RISK RELATIVE RISK
--------- ----------- -------------- -------------
2 DQ2/ other <1X LOW
low risk gene



Most celiac patients carry either DQ2(about 95% of celiacs) or the DQ8
haplotype(about 5% of celiacs). There are two DQ2 haplotypes, but only one
DQ8 haplotype-specific combinations may confer different risks for the
development of celiac disease.
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#2 shadowicewolf

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Posted 23 October 2012 - 03:29 PM

First off, you cannot, absolutely cannot, test for a gluten sensativity like you can celiac. IF it has helped being off it, then stay off of it.

The results, to my understanding, looks okay to me (I could be wrong).

You also have one of the genes, which is interesting.
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#3 IrishHeart

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Posted 23 October 2012 - 03:30 PM

I am a DQ2.2 and I have celiac, but is it considered a "rare celiac gene".

Some people without a DQ2 or DQ8 gene have celiac.

Some people with these so-called celiac genes --do NOT have celiac.

This is not a diagnostic tool, therefore. There are doctors who think that if you do not have a DQ2 or DQ8 gene, your risk of developing celiac is low or nil.

Yet, we see this is not true on here once and awhile.

My doc biopsied a guy with neither of these genes and his villi were totally flat.

If you feel better off gluten, then that is your answer.

Not everyone with gluten-related issues is a full-blown celiac, but they could very well be gluten intolerant and suffer horrid symptoms.

Read this:

http://www.livingwit...p11-2554-1.html
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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 

"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


#4 shadowicewolf

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Posted 23 October 2012 - 03:31 PM

I should also note i have both genes. To my understanding those with both have a slightly higher risk.
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#5 LJR

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Posted 23 October 2012 - 04:15 PM

Thanks for the info, I know I shouldn't worry about the gene testing stuff but Im some one that likes facts and data! Also most of my symptoms were not so topical with the traditional Celiac. I had multipul protruding discs/ DDD, compression fracture at T7, leg pain/ joint pain, calf cramping/ heels spurs plantar fasciitis, costochondritis,right SI joint inflamation and pain, I was actual scheduled for and SI join fussion, boy I'm happy I didn't go thought with that. I could go on and on. Most of this started when I crash in a road race a few years ago, I injered my hip/ SI joint and the injections and radio frequency started and I feel apart, oh I almost forgot the best symptems daily migraines, fatigue and bran fog so bad I was getting lost while drive in the town I've lived in forever. After reading some other people's post here I have relized that maybe they are normal Celiac symptems!
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#6 GottaSki

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Posted 23 October 2012 - 04:55 PM

If I'm reading your report correctly, you have a single DQ2.2 - which as IH mentioned is a gene regarded at lower risk to develop Celiac Disease - note...lower risk, not without risk.

I find your numbers interesting as they are very close to my own kid's negative numbers - all of whom had celiac symptoms resolve after removing gluten. I have often wondered if having a Total IgA in the lower "normal" range may effect the number of antibodies detected in celiac blood tests.

While having "celiac genes" is considered common in those with diagnosed Celiac Disease, they are not required for the onset of Celiac Disease. IMO the data will be far more complete in analyzing risk once the number of folks that have gene testing is increased - as this test is not a necessary component of celiac diagnosis - I'd guess we are a long way off from increasing the data.

Here is one sampling regarding gene testing among diagnosed celiacs:

http://www.ncbi.nlm....pubmed/21292306

Bottom line - removing gluten has improved your health - stick with it :)
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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 :)


#7 LJR

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Posted 23 October 2012 - 05:31 PM

Thanks gottaski! I'm glad you you kid has improved on the diet, I'm worried about my son, he has been complaining about his low black and leg cramps since he was 12. Thinking about changing his diet, but geting a 14 year old to buy into a gluten-free diet may be a problem. Anyhow that is the same age when my back problem began. Started going to to chiropractor on a regular basis when I was 12. Ive just had a hard time excepting this was all due to my diet. Almost to good to be true.
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#8 LJR

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Posted 23 October 2012 - 05:33 PM

Irishhart I read the article you put in your post, very intresting, thanks.
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#9 GottaSki

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Posted 23 October 2012 - 05:47 PM

I'm worried about my son, he has been complaining about his low black and leg cramps since he was 12. Thinking about changing his diet, but geting a 14 year old to buy into a gluten-free diet may be a problem. Anyhow that is the same age when my back problem began. Started going to to chiropractor on a regular basis when I was 12. Ive just had a hard time excepting this was all due to my diet. Almost to good to be true.

My youngest two sons were 13 and 15 when I was diagnosed. Each had completely different symptoms. We let them decide to go gluten-free for themselves - as it really wouldn't be possible to make teenagers stick with it unless it was their decision - IMHO.

The 15 year old decided first - his symptoms were GERD, along with recurring flu type symptoms - his growth rate also slowed, rather than increased during puberty. He was convinced after the first few accidental and intentional glutenings - his reactions became quite severe rather quickly gluten-free.

The 13 year old had achy joint issues from about age 7 or 8 - was screened regularly for AIs. He also vomited more than his share - without other digestive symptoms. Anyway our home slowly evolved from a combined to a gluten-free kitchen - as the gluten decreased he felt much better. Eventually we removed the last gluten containing items from the kitchen and his joint issues completely resolved. He is not careful about CC when out with friends (he's 17 now), but does order gluten-free.

Just be consistent with your diet and share the improvements to your health that result from removing gluten. My boys don't often ask questions until they have processed the info for awhile - give it time and give gentle nudges when the opportunity presents itself.
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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 LJR

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Posted 23 October 2012 - 06:13 PM

Thanks for the advice, my son is very stubbern, wonder were he gets it, I had an OMM tell me last year I should look into a gluten-free diet, I totally went off on her saying how could a mechanical back problem be caused by gluten, I thought all of my problem were from being out of alignment all the time. I have since apologized to her.
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#11 LJR

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Posted 23 October 2012 - 06:17 PM

Thanks for the clarification shadowicewolf. I was confused because it said 2DQ2 I didn't know if I had two copies of the same gene upping the risk.
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#12 GottaSki

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Posted 23 October 2012 - 06:22 PM

Thanks for the advice, my son is very stubbern, wonder were he gets it, I had an OMM tell me last year I should look into a gluten-free diet, I totally went off on her saying how could a mechanical back problem be caused by gluten, I thought all of my problem were from being out of alignment all the time. I have since apologized to her.

Been there....my back pain, weak ankles and knees that popped out regularly from age 11 magically disappeared since I removed gluten three and half years ago! My back problems were blamed on missing a part of my last vertebrae and a rear-end collision at age 18 - crazy that it was what I was eating - but true. So glad I never had the back surgery they wanted to perform on me in the 80's!
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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 :)


#13 IrishHeart

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Posted 24 October 2012 - 05:12 AM

Irishhart I read the article you put in your post, very intresting, thanks.


That's the best explanation of NCGI and if Dr. Fasano, a leading celiac expert recognizes what it can do to a body, then I think it is worth considering.
Gluten sensitivity can create havoc. So even if you may not have celiac, you can still be suffering from some form of gluten sensitivity ---and being off gluten and feeling well is the only way to tell.
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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 

"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


#14 LJR

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Posted 24 October 2012 - 06:07 AM

Havoc, your not kidding, before I got sick my idea of a fun was cycling 100 miles as fast as I could so I already a good idea were my pain threshold was until last spring when I would spend most mornings in the fetal whimpering and tryin to talk myself into going to work. It only took one week of being gluten-free to start feeling better I just can keep thinking that it was somthing more than a sensitivity, I just need to except it and move on. I was just suprized that my test wasn't definitive, but as many of you have said the testing is not the end all! Thanks again for the info.
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