Jump to content
  • 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):

Need Site To Explain Genetic Testing


Celtic Queen

Recommended Posts

Celtic Queen Explorer

Hi all,

 

Just got the test results from the genetic testing today for DS.  According to Prometheus Labs, here are his results:

Homozygous DQ2.5 (DQA1*05:DQB1*0201)

 

Apparently that puts him at the top of the risk scale.  Anyway, can anyone recommend an easy website for me to read to so I can easily explain this to my hubby (who is not Celiac). I didn't have any genetic testing done when I was diagnosed, so I don't know much about it.  And I'm not too scientifically inclined, so I basically need Celiac Genetics for Dummies :rolleyes:

 

I know there are a lot of super smart folks on this board who know a lot about the genetic side of the disease, so I am hoping you can help me out.

 

Also, fyi for those looking into getting the genetic testing done.  My insurance wouldn't pay for the genetic testing unless DS already had a positive blood test or biopsy.  (Even though we would already know he had the disease at that point and wouldn't really need the genetic test to confirm :angry: )  Anyway, Prometheus has a financial assistance program for those who qualify.  We didn't qualify for that but they are going to give me a 30% discount if I don't file anything through insurance (including the cost of drawing the labs) and pay within 30 days.  So there are two options to make it a little bit cheaper for those who think they can't afford it. 

 

Thanks for your help.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Hi all,

 

Just got the test results from the genetic testing today for DS.  According to Prometheus Labs, here are his results:

Homozygous DQ2.5 (DQA1*05:DQB1*0201)

 

Apparently that puts him at the top of the risk scale.  Anyway, can anyone recommend an easy website for me to read to so I can easily explain this to my hubby (who is not Celiac). I didn't have any genetic testing done when I was diagnosed, so I don't know much about it.  And I'm not too scientifically inclined, so I basically need Celiac Genetics for Dummies :rolleyes:

 

I know there are a lot of super smart folks on this board who know a lot about the genetic side of the disease, so I am hoping you can help me out.

 

Also, fyi for those looking into getting the genetic testing done.  My insurance wouldn't pay for the genetic testing unless DS already had a positive blood test or biopsy.  (Even though we would already know he had the disease at that point and wouldn't really need the genetic test to confirm :angry: )  Anyway, Prometheus has a financial assistance program for those who qualify.  We didn't qualify for that but they are going to give me a 30% discount if I don't file anything through insurance (including the cost of drawing the labs) and pay within 30 days.  So there are two options to make it a little bit cheaper for those who think they can't afford it. 

 

Thanks for your help.

I'm curious what they charged. Quest charges about $370 plus $20 blood draw fee if they do it. I submitted it to my insurance but not sure if they will pay.

Sometimes, the cost of filing and waiting and trying to get info from the doctor to submit, etc can take 6-12 months so it makes sense to get a discount for paying cash.

shadowicewolf Proficient

Found this Open Original Shared Link

 

Not sure if its exactly what you wanted, but its a start.

Celtic Queen Explorer

Thanks shadowicewolf.  That is exactly what I needed. 

 

Kareng - Promethus charges $650 for just the labwork.  Your doctor has to order the kit and do the blood draw, so there's a separate fee there.  Luckily we were getting blood drawn for his ADD meds at the same time and I managed to get a two for one.  So it's going to cost me about $450 in the end.  Pricey, but well worth it for my peace of mind.

frieze Community Regular

Hi all,

 

Just got the test results from the genetic testing today for DS.  According to Prometheus Labs, here are his results:

Homozygous DQ2.5 (DQA1*05:DQB1*0201)

 

Apparently that puts him at the top of the risk scale.  Anyway, can anyone recommend an easy website for me to read to so I can easily explain this to my hubby (who is not Celiac). I didn't have any genetic testing done when I was diagnosed, so I don't know much about it.  And I'm not too scientifically inclined, so I basically need Celiac Genetics for Dummies :rolleyes:

 

I know there are a lot of super smart folks on this board who know a lot about the genetic side of the disease, so I am hoping you can help me out.

 

Also, fyi for those looking into getting the genetic testing done.  My insurance wouldn't pay for the genetic testing unless DS already had a positive blood test or biopsy.  (Even though we would already know he had the disease at that point and wouldn't really need the genetic test to confirm :angry: )  Anyway, Prometheus has a financial assistance program for those who qualify.  We didn't qualify for that but they are going to give me a 30% discount if I don't file anything through insurance (including the cost of drawing the labs) and pay within 30 days.  So there are two options to make it a little bit cheaper for those who think they can't afford it. 

 

Thanks for your help.

If hubby is dad, he contributed one of those DQ2.5s

Celtic Queen Explorer

Yikes.  Hadn't thought about that.  That's going to be a fun subject to bring up (sarcasm alert).  DH is really good about eating gluten-free at home, but I don't know that he'd want to give up his beer. 

Archived

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

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

    • Total Members
      134,079
    • Most Online (within 30 mins)
      10,442

    jchamp080
    Newest Member
    jchamp080
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...