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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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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
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    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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