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

Reliable Genetic Testing--Preferably Without Dr. Referral


BlessedMommy

Recommended Posts

BlessedMommy Rising Star

Are the cheek swabs just as reliable as the blood testing?

 

I prefer not to have to talk a doctor into ordering the tests for me. 


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Are the cheek swabs just as reliable as the blood testing?

 

I prefer not to have to talk a doctor into ordering the tests for me. 

 

Hi Ruth!

 

Given your history with gluten trial, I would think any of your doctors would order the genetic test.  That way insurance covers it as well.

BlessedMommy Rising Star

I don't have insurance.

GottaSki Mentor

Ah, I have no alternative suggestions. Hope someone else can help.

BlessedMommy Rising Star

I have the benefit of being in a tri-state area (MI/IN/OH), so it's possible that even if one state has no option to order blood tests yourself, that one of the other states might. It's looking like Indiana might have a lab that is geared towards self pay patients.

Fenrir Community Regular

Here is a suggesting for you:

healthcheckusa.com

 

It is run by a Lab company called Labcorp. In many states you can simply buy the celiac antibody panel on blood over the internet, without a Drs. order and go to one of their draw stations closest to you .

 

Here is the panel on their website:

Open Original Shared Link

 

It's about $180 , so I'm not sure how that fits in your budget.

 

I know they have locations all over the US, so they probably have one within a reasonable drive. Also, their panel is a very good one, much better than just genetic testing.

BlessedMommy Rising Star

I can't do the celiac blood panel, unfortunately. It would undoubtedly come up negative (regardless of whether I am or not) since I've been gluten free for over 4 years. 


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



Celiac.com Sponsor (A8-M):



Fenrir Community Regular

I can't do the celiac blood panel, unfortunately. It would undoubtedly come up negative (regardless of whether I am or not) since I've been gluten free for over 4 years. 

Well, in that case you are better off saving your money and not doing any testing.

 

Even if you do genetic testing it doesn't mean anything. It's either going to show that you have the gene which doesn't in any way indicate or even hint that you may have celiac or it will come up negative which only means that it is likely that you don't have it but doesn't rule it out.

1desperateladysaved Proficient

I had a good experience with the company I used for my cheek swab test.  The test and paperwork took me about 5 minutes and I mailed it to the lab.    I received my results by e-mail in about 3 weeks.   I received an explanation of the results, and even had a chance to ask more questions and was given answers. 

 

Dee

BlessedMommy Rising Star

According to the University of Chicago, though, lack of having the HLA D2 or D8 genes does rule out celiac. My main purpose of looking into it in the first place was to assess my daughter's risk for celiac and determine whether to put her through a gluten challenge, but I also would like a little more info on my own genetics.

 

I feel very frustrated that due to circumstances and the doctors that I saw/consulted with, that I was denied the chance to get a DX in the first place and I'm looking for any pieces to help put together the puzzle, especially for my kids.

kareng Grand Master

Here is a suggesting for you:

healthcheckusa.com

It is run by a Lab company called Labcorp. In many states you can simply buy the celiac antibody panel on blood over the internet, without a Drs. order and go to one of their draw stations closest to you .

Here is the panel on their website:Open Original Shared Link

It's about $180 , so I'm not sure how that fits in your budget.

I know they have locations all over the US, so they probably have one within a reasonable drive. Also, their panel is a very good one, much better than just genetic testing.

Labcorp seems to be a good company. I have had blood work from them, just haven't done any genetic.
Fenrir Community Regular

Labcorp seems to be a good company. I have had blood work from them, just haven't done any genetic.

Yeah, they did my celiac panel and it worked out good for me.

 

I work for a different lab (we don't do celiac testing), but they are pretty good. Mayo Labs is very good as well.

mamaw Community Regular

go to  the  info  pages  on  this  site..  Journal of gluten  sensitivity Maybe?  that  mentions  a new  generic  testing.....

IrishHeart Veteran

 or it will come up negative which only means that it is likely that you don't have it but doesn't rule it out.

 

 

This is not entirely true, however.   

 

Open Original Shared Link

 

There is a blood test available to determine 
whether or not an at-risk individual carries 
the genes responsible for the development 
of celiac disease. These genes are located 
on the HLA-class II complex and are called 
DQ2 and DQ8. Each case of celiac disease 
has been found to show these so-called 
“haplotypes”; therefore, a negative gene 
test indicates that celiac disease cannot 
develop in that individual.
LauraTX Rising Star

Labcorp would be a great way to go.  I am one of their best customers, albeit unwillingly.  Labcorp and Quest diagnostics are the two giants of the medical lab world.

CajunChic Explorer

I just did a buccal swab through labcorp. Go to www.kimballgenetics.com to order. It was quick and easy. Only pit was that it was $395 for the test. I did not go through my insurance to order it, but you did have to have a dr sign saying they approve the test. Maybe your PCP instead of a GI can sign off? It was worth it for me. Good luck

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

    2. - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

    3. - McKinleyWY posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

    4. - trents replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

    5. - Peace lily replied to AristotlesCat's topic in Super Sensitive People
      118

      Gluten Free Coffee

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,238
    • Most Online (within 30 mins)
      7,748

    tcpb
    Newest Member
    tcpb
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
×
×
  • 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.