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Well, Results Of Genetic Testing In...


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25 replies to this topic

#16 Ninja

 
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Posted 30 January 2013 - 07:32 PM

Thanks Madagascar! :) I was checked for antibodies twice. The first time I was gluten-light and the technician had A LOT of trouble getting enough blood. The results were all negative: DGP IGA and IGG were both at 2 (with <19 negative), iTG IGG and IGA were <2 (with <3 negative, 4-9 weak pos. >10 positive), EMA IGA was negative and my serum level was under 145 (with >60 normal). This time around (1 year gluten-free) I had DGP IGA: 5, DGP IGG: 4 (with <19 negative), and tTG IGA: 5, tTG IGG 4 (with <20 negative). Total serum was not run a second time.

The odd thing was... the first time I was tested I was on a nasal steroid twice daily (was on the steroid consistently for 10 years), along with daily anti-inflammatories. I have been able to stop both since gluten-free. Prior to the anti-inflammatories my sed. rate was 19 (<10 normal), after: 0.40 (<1 normal).

I am getting my genes tested again through enterolab because they report which genes you actually do have. We'll see...
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#17 Madagascar

 
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Posted 31 January 2013 - 08:37 PM

so curious that your antibodies were lower before you went gluten-free. i don't have any idea how to explain that.

re your nasal spray - i developed angioedema from Becanase, an allergy nasal spray. evil stuff for my body. my hands, feet and tongue would swell up horribly in a "rare" side effect to it. i thought it was going to kill me. apparently i was reacting to a preservative in it. Five years of suffering with that off and on until i finally connected the dots and saw it pointed to the Becanase. Stopped using it and haven't had it since - probably 5 years now without symptoms. Glad you were able to go off of yours.
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Childhood: canker sores, zillions of cavities, and multiple dental enamel defects (not decay). Acne began at age 9, became cystic acne at 15ish, was bad til early 20's, occasional break-outs now only if i eat certain foods.
1968 - allergic to bacon (arm rashes) & orange juice; sensitive to soy
1970s - lots of digestive problems, allergy to citrus, citric acid, cinnamon, lactose intolerant, rosacea from foods
1980s - allergic to oregano, basil, thyme, pork, strawberries, paprika, smokehouse-type seasonings, peppers
1990s - discovered digestive enzymes (YAY!) and my stomach issues resolved by 90%
2012 - diagnosed with celiac via blood tests (tTG) and genes (HLA DQA1*0201: DQB1*0202)
After learning about celiac, it is obvious my mom had it (ulcerative colitis), my brother has it, and my 3 young adult children have it (2 have digestive problems + anxiety; one has DH). we all went gluten-free november 2012.

#18 Ninja

 
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Posted 31 January 2013 - 09:24 PM

I have no idea how to explain it either! I just wonder what the numbers would have been without the steroid (when I was gluten-light). Also, different labs... I had some weird results (for something else tested at the same time) from the lab that ran the celiac test the first time. I was also glutened recently (before the tests)... I don't know if that would affect anything. Maybe I'll ask them to rerun the tests when I go back in the summer...
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Let the soul speak with the silent articulation of a face

~Rumi
 

 


#19 GottaSki

 
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Posted 31 January 2013 - 09:59 PM

I'm a bit late to this game....

but here is what I think....

I was barely positive at 43 - so sick that I could no longer function. In hindsight == ALL of my health concerns over those four decades can be connected to the malabsorption connected with celiac disease. Had some doctor had the brilliant idea to run celiac antibody tests on me in my 20s or 30s I would have likely been negative and never gotten to the endoscopy stage -- although I was ALWAYS severely anemic.

Dietary response should be a major consideration in diagnosis - yet - sadly - it is often dismissed among our health professionals.

Hang in there - you know what your body is saying far better than any doctor.
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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 :)


#20 mamamonkey

 
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Posted 01 February 2013 - 04:05 AM

I'm following along to see how this turns out. I had my f/u appt with my GI yesterday (1st f/u after the endoscopies). I asked for the genetic testing b/c I would like to know since there is no one else in my family who has been dx (I know, a common theme, it seems) and I would like to know for my son. She is fine with this. Interestingly enough, in the course of our conversation, I mentioned that if I don't have the genes, I don't have celiac, right? And, the GI paused, looked at me, and said, nope, she still would say I have celiac based off of my biopsy results (showed mild inflammation with a week of once a day gluten after being gluten free for 6 months) and my response to the gluten free diet. So, I guess now I wait and see. All of my serologies were negative b/c I was already gluten free when they drew them (long story).
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Hi, I'm Melissa

Mostly gluten-free 5/12 in an attempt to help migraines

Surprise! All my GI symptoms resolved (that I was blaming on not having a gallbladder)

EGD 1/13; biopsies showed inflammation suggestive of partially treated celiac

Bloodwork negative (of course, I was gluten-free)

GI dx'd celiac 1/13


#21 Ninja

 
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Posted 01 February 2013 - 10:38 AM

Gottaski: I actually went back to look through my blood work from age 10 up. My WBC dropped (relatively slowly) around age 14/15 and stayed low from then on, sed. rate went up, and celiac symptoms started. I went gluten free when I was 17/18. I believe I had active celiac for 2ish years before testing was done. The kicker was that he was ready to diagnose me with celiac after he measured me and I had grown 2+ inches (as an adult) since the last time I saw him. Thank you! I don't know what I would do without this place...

mamamonkey: Wow! Sounds like you have an awesome doctor! It seems that rarely do the doctors test for all of the associated genes. For instance, the genetic testing done on me was very specific for only 3 alleles. Let me know the results of your gene testing/how you're doing! :)
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#22 frieze

 
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Posted 01 February 2013 - 06:00 PM

I have no idea how to explain it either! I just wonder what the numbers would have been without the steroid (when I was gluten-light). Also, different labs... I had some weird results (for something else tested at the same time) from the lab that ran the celiac test the first time. I was also glutened recently (before the tests)... I don't know if that would affect anything. Maybe I'll ask them to rerun the tests when I go back in the summer...

steroids suppress your immune system! therefore that testing was inaccurate...
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#23 Ninja

 
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Posted 02 February 2013 - 08:28 PM

I guess I will play the waiting game again with the gene test results from enterolab...

Thank you everyone for your ideas and support!
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Gluten Free 2/12 

 

Let the soul speak with the silent articulation of a face

~Rumi
 

 


#24 Ninja

 
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Posted 21 February 2013 - 04:01 PM

Just got my enterolab genetic tests back. I am double HLA-DQB1*0602. Hmm..


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#25 Takala

 
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Posted 21 February 2013 - 07:11 PM

Uh.... you're supposed to be more vulnerable to narcolepsy and multiple sclerosis ? :(  :blink:  :rolleyes:

 

Look at how this HLA DQB1 602 gene is distributed worldwide now, lots of Spanish, Siberians, Irish, Swedes, Danes, and ... Africans. It originates in Central Asia ?  http://en.wikipedia....g/wiki/HLA-DQ6    This is one of the reasons I haven't had mine done, I suspect with my heritage I'm going to get something odd. 


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#26 Ninja

 
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Posted 21 February 2013 - 08:58 PM

Multiple Sclerosis is in my family... but yes, extremely odd.  :blink: In some ways, I'm glad I had it done...in others, I'm just continuing to realize that we really know very little about this stuff!


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Gluten Free 2/12 

 

Let the soul speak with the silent articulation of a face

~Rumi
 

 





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