21 replies to this topic

[VeggieGal]

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!?

[VeggieGal]

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

[shadowicewolf]

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

[VeggieGal]

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

[shadowicewolf]

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]

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]

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.

[VeggieGal]

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]

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]

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]

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]

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]

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]

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]

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