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Hla Typing


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#16 Ninja

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Posted 25 March 2013 - 08:11 AM

There is quite a bit of research out there on Celiac's who do not have DQ2 or DQ8, considering the supposed "rarity" of them. :P Seems to be somewhere between 3-5% of people who ARE celiac and have tested positive blood and biopsy do not have ANY of the associated alleles. I do not have the beta units of DQ2 or DQ8, did not have biopsy (or endoscopy for that matter) because I refused to gluten challenge. My GI still wants to call it "probable celiac" (due to incredible symptom resolution) even though he "shouldn't" because I do not meet diagnostic criteria. It is possible, and just like many other things, it is most likely more common than we think. :) 


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#17 mommida

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Posted 25 March 2013 - 08:27 AM

Ok genetic testing is not 98% accurate, like it is stated.

 

We had conflicting results in that I was not matching my biological daughter (at least enough that from test results could not show mother-daughter relation)

So we talked to a representative from Prometheus Labs that did the testing.  (I figured obvious mistake, do the test again, because we definately paid a crapload of cash for this)

The response...  Will not do the test again

Could have been the 2% known miss of the test

every blood test has at least a 30% HUMAN error rate.  (lab tech. contaminated sample, imprper storage of sample, misread test result, and on and on......) So maybe error rate is even higher than 30%

and genes mutate (because of the issue non matching mother - daughter)  Didn't bother testing my husband as I am the symptomatic to gluten parent.

 

So genetic testing *can* be a tool.


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#18 frieze

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Posted 25 March 2013 - 09:34 AM

Mommida, is it possible that you are a chimera?

Ok genetic testing is not 98% accurate, like it is stated.

 

We had conflicting results in that I was not matching my biological daughter (at least enough that from test results could not show mother-daughter relation)

So we talked to a representative from Prometheus Labs that did the testing.  (I figured obvious mistake, do the test again, because we definately paid a crapload of cash for this)

The response...  Will not do the test again

Could have been the 2% known miss of the test

every blood test has at least a 30% HUMAN error rate.  (lab tech. contaminated sample, imprper storage of sample, misread test result, and on and on......) So maybe error rate is even higher than 30%

and genes mutate (because of the issue non matching mother - daughter)  Didn't bother testing my husband as I am the symptomatic to gluten parent.

 

So genetic testing *can* be a tool.


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#19 VeggieGal

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Posted 08 May 2013 - 08:08 AM

Well I got my hla tests back and are positive!

Since back in January, (well actually last october but i wouldnt do biopsy) I was dx positive based on celiac blood panel, symptoms and other auto immune disease (doctor said i was 98% chance of celiac)....its amazing how my close family have for the past few months have totally gone into denial about getting tested themselves but as soon as my gene test comes bac positive they now believe its possible and arrange to see their doctor :) . Maybe more gene testing should be done ? I know it doesnt mean they have celiac but my family seem to be taking it more seriously now :)
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#20 Gemini

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Posted 08 May 2013 - 10:50 AM

Well I got my hla tests back and are positive!

Since back in January, (well actually last october but i wouldnt do biopsy) I was dx positive based on celiac blood panel, symptoms and other auto immune disease (doctor said i was 98% chance of celiac)....its amazing how my close family have for the past few months have totally gone into denial about getting tested themselves but as soon as my gene test comes bac positive they now believe its possible and arrange to see their doctor :) . Maybe more gene testing should be done ? I know it doesnt mean they have celiac but my family seem to be taking it more seriously now :)

Ok...let's not keep us in suspense here!  Which ones ya got?  ;)


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#21 VeggieGal

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Posted 08 May 2013 - 11:13 AM

Ok...let's not keep us in suspense here! Which ones ya got? ;)


oh i dont know? the dietician just said it was positive. I'll try and get exact results, would be good if they can be interpreted.

Was just thinking, that if i'd gone through with biopsy and they took insufficient samples or it was patchy...then I could've had a completely different result...its kinda scary that so many people could be incorrectly un-diagnosed because endoscopy is classed as the 'gold standard'. I realise endoscopy is worthwhile for seeing how much damage there is though.

Anyway, i'll get back with results :)
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#22 Celiac Mindwarp

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Posted 08 May 2013 - 01:50 PM

Great you got your results.

Glad the family is taking notice too. Should make it easier if your son runs into any issues later.

I agree on the scary bit. If it wasn't for this board I'd be out there eating gluten now with no clue about NCGI.
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- 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 Posted Image

#23 VeggieGal

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Posted 06 June 2013 - 08:16 AM

Right, so I've finally got my positive gene results in writing if you can please interpret ?

Definitive results:
HLA - DQA1*01, DQA1*03; DQB1*03:02/07/08/11, DQB1*05

Testing by DNA analysis (PCR-SSP)

Positive (Heterozygous) for the DQ8 (DQA1*03:01/DQB1*03:02)
Genotype associated with coeliac disease

Can you tell by these results which of my parents is to blame lol...also, shouldnt there be a DQ2 result? Whats the difference between DQ2 and DQ8?

Thank you muchly :)
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#24 pricklypear1971

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Posted 06 June 2013 - 09:30 AM

Right, so I've finally got my positive gene results in writing if you can please interpret ?

Definitive results:
HLA - DQA1*01, DQA1*03; DQB1*03:02/07/08/11, DQB1*05

Testing by DNA analysis (PCR-SSP)

Positive (Heterozygous) for the DQ8 (DQA1*03:01/DQB1*03:02)
Genotype associated with coeliac disease

Can you tell by these results which of my parents is to blame lol...also, shouldnt there be a DQ2 result? Whats the difference between DQ2 and DQ8?

Thank you muchly :)


You don't know which one to blame until one of them gets hla typing. My son can blame HIS DAD, too - because he got a half Celiac gene from HIM (I know this because I don't have it).

You can get a blend - half from one parent, half from another.

You don't have to have dq2. Dq8 is sufficient, don'tcha think???
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Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#25 VeggieGal

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Posted 06 June 2013 - 10:49 AM

You don't know which one to blame until one of them gets hla typing. My son can blame HIS DAD, too - because he got a half Celiac gene from HIM (I know this because I don't have it).

You can get a blend - half from one parent, half from another.

You don't have to have dq2. Dq8 is sufficient, don'tcha think???


Yes one is enough lol ! Just wondered what the difference was ..is there different symptoms/meanings between DQ2 and DQ8? And do I just have the Dq8 gene? I don't understand the HLA top part of the results (or any of it for that matter) !

I also asked the dietician today about probiotics and digestive enzymes and she didnt seem to know anything about them :( well I'll continue taking them anyway.

On a plus side, I'm losing abit of weight (very slowly though) :)
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