Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Genes !


DVjorge

Recommended Posts

DVjorge Apprentice

Hi community,

I am curious about what are the real genes implicated in Celiac ??

DQ-2 and DQ-8 ??

Because, Enterolab has another mind thinking that there are more genes, if they are correct, 90% of the poupulation have the genes.

Thank


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

I know it sounds strange but what genes are considered celiac associated genes can vary from country to country. Many people have the associated genes but don't develop celiac and just having the genes is not diagnostic. We have much, much more to learn about the genetics involved with celiac and gluten intolerance.

nora-n Rookie

The DQ2 and DQ8 genes are said to respnosible for only about 40% of the risk for celiac, so other genes like myo9b and others carry more risk. The greatest risk is having a relative with celiac.

I have DQ5 and DH, and one does not need the celiac genes for DH

pricklypear1971 Community Regular

Where do you get testing for the other genes if u.S. Panels concentrate on 2, 8?

nora-n Rookie

Where do you get testing for the other genes if u.S. Panels concentrate on 2, 8?

i read on other forums that some phoned the labs and they actually had tested for the other genes, but not reported them to the doctor (I guess to not to confuse the doctors, too much information) and they got all the results, both alpha and beta chains.

So I suggest you try to find out if they tested alpha and beta chains.

They started doing that the last two-three years or so.

pricklypear1971 Community Regular

i read on other forums that some phoned the labs and they actually had tested for the other genes, but not reported them to the doctor (I guess to not to confuse the doctors, too much information) and they got all the results, both alpha and beta chains.

So I suggest you try to find out if they tested alpha and

beta chains.

They started doing that the last two-three years or so.

Mine tested alpha and beta, but the whole thing is confusing.

mushroom Proficient

Mine tested alpha and beta, but the whole thing is confusing.

Nora is very good at untangling all these confusing things. :D Try posting them and see what she says.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Where do you get testing for the other genes if u.S. Panels concentrate on 2, 8?

I had mine tested with Enterolab after my DD had doctors tell her that her biopsy and blood test were both a false positive because she didn't have DQ2 or DQ8.

pricklypear1971 Community Regular

I had mine tested with Enterolab after my DD had doctors tell her that her biopsy and blood test were both a false positive because she didn't have DQ2 or DQ8.

Well, I have a kit and need to send it in. Perhaps that will shed light further.

nora-n Rookie

Now we found articles that say the japanese celiacs have DQ9, simply because DQ9 is the main gene over there by number.

Now DQ 9 differs from DQ8 by one amino acid only , and it is capable of binding gliadin molecules in a 3D model.

(0303 is DQ9)

Now 6% of celiacs have half genes, and 2% have other genes, so why doctors can say for sure that a symptomatic patient cannot be celiac with a DQ 9 gene is beyond me. And the japanese celiacs are DQ9.

pricklypear1971 Community Regular

Can you refer me to the study about the % with half, whole genes?

DVjorge Apprentice

Thanks for the answers. But, I still don't know what are implicated genes ??

It looks like nobody knows the true. Enterolab says one thing, others say another, and so on !!

Is there an absolute list of genes necessary to develop Celiac ??

Or the genes theory is something no true ??

Thanks.

pricklypear1971 Community Regular

Thanks for the answers. But, I still don't know what are implicated genes ??

It looks like nobody knows the true. Enterolab says one thing, others say another, and so on !!

Is there an absolute list of genes necessary to develop Celiac ??

Or the genes theory is something no true ??

Thanks.

There are two main genes recognized in the western world -dq2 and dq8. There are another 13 implicated. I read a synopsis the other day that one is more specific to "activated" celiac than dq2, 8. There's constant research - and just because more have been identified doesn't necessarily mean more people carry the genes, it can also be more SPECIFIC identification.

mushroom Proficient

Thanks for the answers. But, I still don't know what are implicated genes ??

It looks like nobody knows the true. Enterolab says one thing, others say another, and so on !!

Is there an absolute list of genes necessary to develop Celiac ??

Or the genes theory is something no true ??

Thanks.

I would not regard the current genetic information available as anywhere near definitive.

nora-n Rookie

I have an old link somewhere that says several % have half genes,

here is one from pubmed about half genes:

Open Original Shared Link

and now just recently the dutch found something similar

nora-n Rookie

Here is something that says 9 out of 37 celiac children did not have DQ2 or DQ8

Open Original Shared Link

still it does not say what genes they had

I guess most had half genes and one or two had other genes, based on other articles of the same kind

domesticactivist Collaborator

Kimball Genetics division of Labcorp is who we used. They send just the summary to your dr, but if you call the genetic councilor they will give the full results.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,199
    • Most Online (within 30 mins)
      7,748

    Stacy M
    Newest Member
    Stacy M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Redanafs
      Hi everyone. Back in 2022 I had blood work drawn for iga ext gliadin. Since then I’ve developed worse stomach issues and all other health issues. My doctor just said cut out gluten. He did no further testing. Please see my test results attached. I just need some direction cause I feel so ill and the stomach pain is becoming worse. Can this test show indications for other gastrointestinal diseases?
    • Fayeb23
      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
×
×
  • Create New...