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Let's Post Our Celiac Genes - Everyone Join Plz !


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13 replies to this topic

#1 PersianCeliac

 
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Posted 20 July 2012 - 09:29 AM

I have seen this on other gluten free forums and thought it would be interesting and resourceful to do it here. If you've had a genetic test for celiac post your result and celiac diagnosis or symptoms. I'll start first:

Mom - DQ2.5/DQ2.2 - 48 years old female - positive blood work marsh 3B at biopsy
Myself- DQ2.2/DQ2.2 - 24 years old female - bloating and diarrhea
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#2 roxieb73

 
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Posted 20 July 2012 - 10:55 AM

DQ1/DQ1 (subtypes 5,6)
Negative blood
No intestional biopsy
Rash biopsy DH or Lichen Planus (they aren't sure which but both autoimmune gluten reactions)
Too many symptoms to list but most severe being Osteomalacia. I have Iron defcient anemia, and critically low vitamin D, elevated Liver Enzymes etc....
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GI confirmed Celiac 08/2012
Double DQ1 subtypes(5,6)
Severe Vit D defiency
Iron Defiency Anemia
Gluten Free and on my way back to good health

#3 1974girl

 
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Posted 20 July 2012 - 12:56 PM

Dd is DQ2.5 and DQ8. Husband has the same but it turned out type 1 diabetic in him Dd has hashis and celiac and eosinophilic esophagus. She has no GI symptoms at all. It's all internal. Jury is still out on type 1. I am praying going gluten free will stop that.
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#4 cyberprof

 
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Posted 20 July 2012 - 01:35 PM

ME: Diagnosed by biopsy 2/12/07 Marsh I. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Symptoms: gas, intestinal pain, bloating, big D, mouth/canker sores, anxiety, joint and spinal pain, vitamin/mineral malabsorption causing low Vit D, low Vit B and ostopenia and general poor health and early menopause. All the above symptoms gone/relieved. T-scores for osteopenia are improved in five years.

Son, age 19: Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5)

Symptoms: Previously delayed growth. 75th percentile height and 75th percentile weight at age 4. 3rd percentile weight, 25th percentile height (5'3") at age 15. Significantly delayed puberty (past age 15). Bone age 12.1 at age 15. Stomach aches, intestinal upsets and general poor health. Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Went gluten-free, casein-free 3/15/08. Now 6'3" (Over six feet!) and doing great.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#5 PersianCeliac

 
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Posted 20 July 2012 - 04:43 PM

Thanks for those who replied.

More than a 100 views and 3 replies ! Lol so co-operative ! I'm not asking you for your credit card number just to clarify :P lol
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#6 IrishHeart

 
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Posted 20 July 2012 - 04:51 PM

"views" ...means the number of people who read this post and this site(while surfing the internet)...not necessarily members who are "ignoring you and not responding", okay?
Those "numbers of views" mean nothing --in terms of people "unwilling to respond"... so, don't take it personally. :)


I have Double HLA- DQ2 (I am a 2.2, according to my genetic tests--which is a "rare" combo for celiac--about 1%)

I am a diagnosed celiac and I had dozens of symptoms (my story is well told on here, so I won't bore everyone again) and I was left UnDXed for over 35 years.
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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 sa1937

 
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Posted 21 July 2012 - 05:11 AM

I've read your post, am diagnosed by positive celiac blood panel and positive biopsies but I don't have a freakin' clue what my genes are. I suspect there are others in the same position who've read your post.

Likewise my adult daughter is also celiac and obviously got at least one of my genes but she has no clue what they are either.

Nonetheless, your question is an interesting one for those who know what genes they have.
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Sylvia
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
Gluten Free - April 9, 2010

#8 Lisa

 
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Posted 21 July 2012 - 05:53 AM

I've never been tested, and don't see the need for it.
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#9 cyberprof

 
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Posted 21 July 2012 - 07:54 AM

"views" ...means the number of people who read this post and this site(while surfing the internet)...not necessarily members who are "ignoring you and not responding", okay?
Those "numbers of views" mean nothing --in terms of people "unwilling to respond"... so, don't take it personally. :)


I have Double HLA- DQ2 (I am a 2.2, according to my genetic tests--which is a "rare" combo for celiac--about 1%)

I am a diagnosed celiac and I had dozens of symptoms (my story is well told on here, so I won't bore everyone again) and I was left UnDXed for over 35 years.


IrishHeart, do you and/or your docs think that your severe symptoms are because of the heterozygos nature of your genes (hah! I wrote jeans first) or because of the 35 years? My genes are homozygous but I was undiagnosed for 30+ years.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#10 PersianCeliac

 
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Posted 21 July 2012 - 09:45 AM

IrishHeart, do you and/or your docs think that your severe symptoms are because of the heterozygos nature of your genes (hah! I wrote jeans first) or because of the 35 years? My genes are homozygous but I was undiagnosed for 30+ years.


Cyberprof, are you homozygous (two copies of DQ2.5) or heterozygous (one copy of DQ2.5) ?
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#11 IrishHeart

 
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Posted 21 July 2012 - 11:33 AM

IrishHeart, do you and/or your docs think that your severe symptoms are because of the heterozygos nature of your genes (hah! I wrote jeans first) or because of the 35 years? My genes are homozygous but I was undiagnosed for 30+ years.


I really never discussed it much with him after we saw the test results.
To be honest, his first priority was to get me straightened out. I had many deficiencies and he only ordered the genetic tests as part of the full follow up diagnostic package on me.

I requested them because my Dad had suffered some strange & horrible gastro symptoms and had pernicious anemia and dumped hematocrits which required blood transfusions for 8 years. We know now that he certainly was a celiac, but it's too late for him. My Mom also suffered many symptoms and once she saw how this thing tried to kill me, and then looked at the gene test results, taking into account her own health history, she went gluten-free (Her doctor thought she was very wise to do it and her many symptoms have resolved and she is the most amazingly healthy 85-year- old there is. :) ) I had also hoped it would encourage my siblings to be tested (as they have many AI diseases) but to no avail.

When I see him for my checkup in October, I'll ask him his thoughts.
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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


#12 beachbirdie

 
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Posted 21 July 2012 - 12:43 PM

Just adding to what others said...don't stress about the number of views vs. the number of replies, I think there are a lot of folks who just can't get the gene tests!

I am a DQ 2.2.

Lowest risk category but positive blood test. Vague non-classic symptoms...along with Hashimoto's disease.

A proud member of the "1% of the 1%" I guess.
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#13 ravenwoodglass

 
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Posted 21 July 2012 - 01:16 PM

I'm a double DQ9. You can see by my sig how much fun that was prediagnosis.
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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)

#14 hey

 
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Posted 25 July 2012 - 08:48 PM

I just got genetic testing done a few days ago. Here are my results (been trying to figure out what they mean but it's so complicated):

DQA1 Genotype:
0505 (HLA-DQ2)

DQB1 Genotype:
0301 (HLA-DQ3)
0202 (HLA-DQ2)

Brief summary of my symptoms: I have many chronic fatigue symptoms, sleep apnea, mental fog, mild digestion problems, and am possibly hypothyroid (most of my immediate family members are hypothyroid).

Btw, I don't know if I'm gluten sensitive or not yet. I'm new to the gluten-free diet but haven't really noticed any improvement so far. I did have some kind of stool test done for celiac disease several years ago but it came back negative.
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