Jump to content

  • 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

Gene Test

MyMississippi

Recommended Posts

MyMississippi Enthusiast
MyMississippi
Posted

I'm thinking I might go for the gene testing since I am allergic to wheat and can't do the eating gluten thing. I really would like to know if I have the genes.

I certainly have a suspicious family history for celiac----I've had abd. cramps, bloating, and "gurgling" intestines since I was 18. My son has had recurrent mouth ulcers since childhood- (celiac symptom). My sister is anemic with gut problems too. My father (of Irish decent )had same problems as well as most of his siblings did. His own father (my grandfather ) had issues too and referred to it as the "Carr Belly " :D So apparently these bellyaches go way back ! :)

Is the test expensive--- I have insurance--- but not sure if I will ask my MD for the test or just do it myself.

Thanks !

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

Celiac.com Sponsor (A8-M):


brendygirl Community Regular
brendygirl
Posted

I've been thinking about doing this, too. My parents are both Norwegian, so wondering if I have two of the genes or just one.

There are articles about genetic testing and labs on the homepage on this site. Very informative.Good luck!

lizard00 Enthusiast
lizard00
Posted

My doctor uses Prometheus. I believe that there are only 3 labs int the US that are capable of doing this test:

Enterolab (which is still controversial), Prometheus and Kimball. (If I'm wrong on that, I apologize and please correct me)

The next question is how much will my insurance pay??? :huh::lol:

happygirl Collaborator
happygirl
Posted

Many other labs do it as well - including

Quest Open Original Shared Link

Labcorp Open Original Shared Link

And most labs that your doctors office uses. Go to your doctor and ask to him to test you for HLA DQ2 and DQ8. :)

Otherwise, use Kimball Genetics - they are recommended by the Celiac Center at the University of Chicago. Open Original Shared Link

MyMississippi Enthusiast
MyMississippi
Posted
  • Author

Thanks for the info !

Will look into it--- :)

blueeyedmanda Community Regular
blueeyedmanda
Posted

I had my testing done through AML labs which has since converted to Quest Diagnostics. It is the lab our hospital uses, my insurance covered the entire panel.

*lee-lee* Enthusiast
*lee-lee*
Posted

i used Prometheus. my GI doc ordered the tests and i went to a local hospital to have the blood drawn. Supposedly the doctors office and the hospital have some kind of agreement where they don't give Prometheus any patient info and all the billing is through the doctor and the hospital. i was confused as far as what that meant for me and what i'd have to pay but i bit the bullet and went ahead with the testing. i just got the initial EOB from my insurance company and sure enough, $788 was billed from the hospital. no mention of Prometheus. insurance hasn't paid yet so i don't know what is my portion. i'm hoping it's not more than a $10 or $25 co-pay.

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

Celiac.com Sponsor (A8-M):


givenupgluten Explorer
givenupgluten
Posted

I go to Dr. Green in NY, and he orders the tests through Kimball Genetics. I didnt end up having to pay anything at all, b/c I went through my insurance and they covered it. When you receive the tests, you can get codes for the test, so that you can contact your insurance co. and find out if they will cover it. I called before I sent in the test just to make sure. I'm not sure about the other genetic testing labs, but i've heard Enterolab is also pretty well known and respected.

nora-n Rookie
nora-n
Posted

https://www.celiac.com/articles/21628/1/Cel...tics/Page1.html is an article that had been in a newsletter but now it has been published on the website.

Some labs only test for DQ2 and 8, and some only for the beta chain, and those with the half gene are missed, and those with the gluten sensitive genes will just get an answer that they are negative for celiac gennes without further expnanation. Some labs have changed their testing and reporting now (those that calculate your risk now. The old way of reporting or not reporting results was ovten very confusing)

I am thinking about ordering a gene test from enterolab as I am in europe and only got the test for DQ2 and 8, and now my doctors think they excluded celiac and it is all in my head, and have referred me to the shrinks. The article comments on negative resutls, that they still cannot be used to exclude celiac like my doctors think. ( they say it si absolutely impossible for me to be celiac. My daughter is diagnosed celiac, and I have DH but without diagnosis so I disagree)

nora

jbuckeye Newbie
jbuckeye
Posted

I thought I'd share my experience on gene testing again since this topic pops up from time to time. I know Kimball Labs is very respected, but they misdiagnosed me the first time they did my testing. I was a biopsy and blood test proven Celiac, and they told me that I was non DQ2 and 8. When I told them that I'd already been diagnosed, they reran the test and found DQ8. They said that it was "acting like another gene" that I had and they needed to do a more sophisticated test.

I tested my kids and myself through Enterolab, and the test results showed that Enterolab uses the American Red Cross for the gene testing. If you can't trust the American Red Cross, who can you trust? :)

nora-n Rookie
nora-n
Posted

jbuckeye, I have been wondering for several months now what the enterolab test said about you (assuming you did some gene tests through them)

and what genes Kimball thought you had initially.

I remember thye sent the sample on to a bigger lab and they found DQ8.

I guess Kimball used a rapid test, a commercial test kit, I found it when googling.

I guess the bigger lab actually carried out a proper test.

There is an article where it is mentioned which lab Enterolab uses, https://www.celiac.com/articles/21628/1/Cel...tics/Page1.html , Bonfils does testing for Enterolab

and see the next article Ten facts

https://www.celiac.com/authors/45/Dr.-Scot-Lewey

I was negative on a test that seems identical to kimball's test, so the question is a bit relevant to me.

Daughter is a diagnosed celiac.

Here is your initial posting. Open Original Shared Link Blogspot seems to be down these days so thefoodoc's link does not work right now.

nora

glutenfreewithease Rookie
glutenfreewithease
Posted
jbuckeye, I have been wondering for several months now what the enterolab test said about you (assuming you did some gene tests through them)

and what genes Kimball thought you had initially.

I remember thye sent the sample on to a bigger lab and they found DQ8.

I guess Kimball used a rapid test, a commercial test kit, I found it when googling.

I guess the bigger lab actually carried out a proper test.

There is an article where it is mentioned which lab Enterolab uses, https://www.celiac.com/articles/21628/1/Cel...tics/Page1.html , Bonfils does testing for Enterolab

and see the next article Ten facts

https://www.celiac.com/authors/45/Dr.-Scot-Lewey

I was negative on a test that seems identical to kimball's test, so the question is a bit relevant to me.

Daughter is a diagnosed celiac.

Here is your initial posting. Open Original Shared Link Blogspot seems to be down these days so thefoodoc's link does not work right now.

nora

Just a note, I was tested in August through Enterolab and both of my girls are being tested this month and Enterolab is currently using the American Red Cross. It is also listed on the bottom of my lab results. American Red Cross is not associated with Bonfils is it?

jbuckeye Newbie
jbuckeye
Posted

Hi--Kimball originally sent a letter saying I was DQ2 and 8 negative--nothing else. When they reran the test, a new letter came saying I was DQ8 positive.

Enterolab said I was DQ8 and DQ7.

My daughter is also DQ8 and DQ7.

I'm thinking that maybe DQ8 and 7 look similar/have similar actions, but genetics is WAY over my head.

jbuckeye, I have been wondering for several months now what the enterolab test said about you (assuming you did some gene tests through them)

and what genes Kimball thought you had initially.

I remember thye sent the sample on to a bigger lab and they found DQ8.

I guess Kimball used a rapid test, a commercial test kit, I found it when googling.

I guess the bigger lab actually carried out a proper test.

There is an article where it is mentioned which lab Enterolab uses, https://www.celiac.com/articles/21628/1/Cel...tics/Page1.html , Bonfils does testing for Enterolab

and see the next article Ten facts

https://www.celiac.com/authors/45/Dr.-Scot-Lewey

I was negative on a test that seems identical to kimball's test, so the question is a bit relevant to me.

Daughter is a diagnosed celiac.

Here is your initial posting. Open Original Shared Link Blogspot seems to be down these days so thefoodoc's link does not work right now.

nora

nora-n Rookie
nora-n
Posted

Thank you, I was wondering wether I should order a gene test from enterolab. Shipping is very expensive from europe.

As far as I know, DQ7 and DQ8 are not similar, but I can look at the Wiki for DR. Looks like there are several DQ8 types, so maybe this rapid test kit is not so good for all of the DQ8 types, just the more common ones. Maybe. Just a theory.

nora

nora-n Rookie
nora-n
Posted

The DR wiki page is Open Original Shared Link

I even have a link that says that DQ7 is very very similar to DQ8:

Open Original Shared Link

"Eight of the 122 celiac disease patients lacked both the heterodimer and the DRB104 alleles; therefore, we further screened the DQB1 locus to investigate if other alleles were present in association to celiac disease (2)(14). Two of these eight celiac disease patients showed the DQ2 molecule (DQB10201 allele in heterozygosis); but one of them carried also the DQB10501 allele, also found in Sardinian patients to be associated to celiac disease (15); four showed the DQ7 molecule (DQB10304 or DQB10301 alleles). Another patient carried the DQ8 molecule encoded by the DQB10302 allele, and the remaining patient had the haplotype DQB10501 in homozygosis (15). The DQ8 molecule seems to be an alternative to DQ2 in influencing susceptibility towards celiac disease, being present in up to 20% of celiac patients not bearing of DQ2 in the Mediterranean area (2)(14)(16). Our data do not support an earlier finding that HLA-DQ7 is a nonsusceptible molecule (2). In fact, DQ7 was present in 50% of our celiac disease patients in the absence of the heterodimer and of the DRB104 alleles. Because the DQ7 molecule is very similar to the DQ8 molecule, it could alternatively present similar gluten-derived peptides to restricted T cells (17). DQ7 has been detected in a few celiac disease cases in the absence of DQ2 but in association with the DRB104 alleles (18). "

I also have a link that DQ9 is very similar to DQ8

Open Original Shared Link and they say right out that both DQ7 and DQ9 are very similar to DQ8.

"The DQ8 molecule is highly homologous to two other naturally occurring alleles, DQ7 (DQA1*0301/B1*0301) and DQ9 (DQA1*0301/B1*0303). These three alleles share an identical chain (DQA1*0301) and have nearly identical

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748
    Lunaluv
    Newest Member
    Lunaluv
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.