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Hla Typing

VeggieGal

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VeggieGal Contributor
VeggieGal
Posted

Hi all,

I was dx coeliac on 4th January through bloodwork, gluten challenge, symptoms and vitamin deficiencies. (I couldnt tolerate the biopsy).

I've just recieved a copy of letter which has gone to my consultant which is asking for a HLA Typing test.

I have googled this but am finding it confusing. Do I have to have another test? (ive been gluten free since the beginning of Jan).

Can someone please put this' HLA Typing' into easy to understand terms for me!?

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VeggieGal Contributor
VeggieGal
Posted
  • Author

is HLA typing..gene testing? and does that mean I have to have my family tested ? thanks

shadowicewolf Proficient
shadowicewolf
Posted

Yes, HLA is the gene typing. Celiac is genetic and all first degree relatives (parents, siblings, children) should be tested.

VeggieGal Contributor
VeggieGal
Posted
  • Author

thanks shadowicewolf... do you know if we have to be ingesting gluten for testing?

shadowicewolf Proficient
shadowicewolf
Posted

thanks shadowicewolf... do you know if we have to be ingesting gluten for testing?

Not at all. It just looks at your genetic code, looking for certain alleles related to those that can be in assosiation with celiac (such as HLA-DQ8 and HLA-DQ2).

VeggieGal Contributor
VeggieGal
Posted
  • Author

oh thanks; thats ok then...I had a moment of fear thinking I had to go back to eating the bad stuff again. Looks like they want to use the test as confirmation that i have celiac so just hoping its reliable.

shadowicewolf Proficient
shadowicewolf
Posted

oh thanks; thats ok then...I had a moment of fear thinking I had to go back to eating the bad stuff again. Looks like they want to use the test as confirmation that i have celiac so just hoping its reliable.

By itself, it cannot be used to diagnose, however, it acts as an additional piece of support. Somewhere between 20-30% of the population have these genes yet never develop celiac. It is also possible, but quite rare, to have celiac and not have the genes. I've heard that outside the US doctors test for more than just the dq8 and dq2, this may be the reason.

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VeggieGal Contributor
VeggieGal
Posted
  • Author

knowing my luck, I'll be one of the rare ones pffft. Anyway, thanks again, hopefully, I'll post my results here shortly

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

I was tested for 2 and 8 in the UK.

I came back negative, but had negative blood and biopsy too (couldn't last a gluten challenge). I was diagnosed non celiac gluten intolerant on the basis of this.

I am secretly holding out for better testing. I am gluten-free for life though, anyway.

Glad you don't have to eat the evil stuff again for this test. Mine took several weeks for results.

Mw

VeggieGal Contributor
VeggieGal
Posted
  • Author

Mw..well dietician is trying to get me confirmed mainly so I can have the uk prescription.

I went to a local coeliac conference recently and it sounds like they are always looking at new ways of testing. he said theyre currently looking for people to test by looking at the brain for ataxia (showed photos of differences) ...I half feel like putting myself forward for it as I thought most of my problems were neurological but now when Ive been gluttened, my gut really feels it :(

shadowicewolf Proficient
shadowicewolf
Posted

I've got both 2 and 8 :)

 

My gut was a mess prior to starting the gluten free diet. Vomiting (once to twice a day) plus "D" on a daily basis was not fun. Nausea was a day to day battle. I had some neurological symptoms then too (part of my right arm would go numb, with two of my fingers). Was it gluten related or a pinched nerve? I have no idea, but it stopped once i went gluten free.

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Sorry to hear you got glutened :(

That's great if you can get diagnosed for prescriptions.

It could also help in sorting things out for your son if you do have the genes. It might also be worth asking for genetic testing at the same time once you manage to get him blood tested.

I haven't found research on celiacs who test negative on genes, but there do seem to be people around who test negative but have remarkably celiac like symptoms, and respond to gluten-free. Just in case you get an unexpected negative. Sounds like the glutening might be quite convincing at the moment.

Good luck with it

Mw

VeggieGal Contributor
VeggieGal
Posted
  • Author

Wolf..yeah I get nausea too..its no fun. At least youre improving now :)

Mw..well I'm not sure what is gluttening me as I'm being careful but then I suppose it takes time to heal and it may all be part if the process. doubt it helps that Ive been making my sons meals.

Ah you remembered about my son being scared of needles..well I bought a biocard test from Boots today but as soon as he realised it was a needle he backed off! So anyway, Ive just this ten mins ago been a horrible mum and while he was sleeping I tested him (he never even jolted his hand haha).. but anyway, the test is negative.

As theres only me and him, I'm going to try him gluten free anyway and see if theres any improvements in us both.

Thanks Mw

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Us Mums have to be sneaky sometimes :)

gluten-free all round sounds good. I am working up to persuading my 6 year old son to try it. He has asthma and I would like to see if it makes a difference. He is totally nut free already. I am scared to make him stand out more than he already does. Hard to see a kid on a nebulizer and struggling to breathe.

I have been glutened way less since I started eating whole foods. I have uncovered other food issues though, and have lost dairy, soy and sugar.

Keep it up and keep smiling :)

shadowicewolf Proficient
shadowicewolf
Posted

Wolf..yeah I get nausea too..its no fun. At least youre improving now :)

Mw..well I'm not sure what is gluttening me as I'm being careful but then I suppose it takes time to heal and it may all be part if the process. doubt it helps that Ive been making my sons meals.

Ah you remembered about my son being scared of needles..well I bought a biocard test from Boots today but as soon as he realised it was a needle he backed off! So anyway, Ive just this ten mins ago been a horrible mum and while he was sleeping I tested him (he never even jolted his hand haha).. but anyway, the test is negative.

As theres only me and him, I'm going to try him gluten free anyway and see if theres any improvements in us both.

Thanks Mw

Nearly two years later, I'm doing very well :)

Ninja Contributor
Ninja
Posted

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. :) 

mommida Enthusiast
mommida
Posted

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.

frieze Community Regular
frieze
Posted

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.

  • 1 month later...
VeggieGal Contributor
VeggieGal
Posted
  • Author

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 :)

Gemini Experienced
Gemini
Posted

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?  ;)

VeggieGal Contributor
VeggieGal
Posted
  • Author

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 :)

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

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.

  • 4 weeks later...
VeggieGal Contributor
VeggieGal
Posted
  • Author

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 :)

pricklypear1971 Community Regular
pricklypear1971
Posted

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???

VeggieGal Contributor
VeggieGal
Posted
  • Author

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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