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Reliable Genetic Testing--Preferably Without Dr. Referral

BlessedMommy

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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. 

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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. 

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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

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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