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
BlessedMommy
Posted

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
GottaSki
Posted

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
BlessedMommy
Posted
  • Author

I don't have insurance.

GottaSki Mentor
GottaSki
Posted

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

BlessedMommy Rising Star
BlessedMommy
Posted
  • Author

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
Fenrir
Posted

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
BlessedMommy
Posted
  • Author

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
Fenrir
Posted

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
1desperateladysaved
Posted

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
BlessedMommy
Posted
  • Author

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
kareng
Posted

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
Fenrir
Posted

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
mamaw
Posted

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

IrishHeart Veteran
IrishHeart
Posted

 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
LauraTX
Posted

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
CajunChic
Posted

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.

Go to topic listing

  • 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. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate...
    2. MogwaiStripe
      - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks...
    3. knitty kitty
      - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine. Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes. HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc. Thiamine deficiency inside a cell triggers a...
    4. knitty kitty
      - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten! Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten. I can get glutened from the bakery section at the grocery store. The nose and mouth drain into the digestive system and can trigger systemic reactions. I find the histamine release...
    5. Scott Adams
      - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Guinness, can you drink it?

      This article may be helpful:
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,247
    • Most Online (within 30 mins)
      7,748
    Gilda De Moraes
    Newest Member
    Gilda De Moraes
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      Related issues

      By Mari · Posted

      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      Airborne Gluten?

      By MogwaiStripe · Posted

      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Gluten Issues and Vitamin D

      By knitty kitty · Posted

      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Airborne Gluten?

      By knitty kitty · Posted

      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      This article may be helpful:  
×
×
  • 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.