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):

Genetic tests

asaT
 Share
Go to solution Solved by Scott Adams,

Recommended Posts

asaT Apprentice
asaT
Posted

I was just diagnosed a few weeks ago and now some family members are being tested, just wanted some input on that.

I have the HLA-DQ2.5 gene haplotype according to 23&me and so does my brother. He has yet to go in and get antibody testing. He has 3 boys. One (12y.o at the time)has been diagnosed with UC and had negative antibody titer when that was done (but no s.i. biopsy). The other one (10 y.o at time) had upper gi scope for swallowing problems and had a s.i. biopsy which was negative for celiacs, it seemed to be an esophageal problem. No known problems with the third youngest one. He wants to do genetic testing on them before doing anything else. His insurance is horrible and won't pay for anything so he is looking at the tests you can order online. 

My question is, is the 23 and me test sufficient? the other one we were looking at is this: https://rxhometest.com/product/search/celiac

They are both $129, but the 23&me obviously has a lot more extra info other than the celiacs. Which one should they do? Or any other recomnendations?

Thanks!

Asa

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

Celiac.com Sponsor (A8-M):


asaT Apprentice
asaT
Posted
  • Author

Also my mom is having antibody testing done as she has many symptoms, BUT she tests negative on the 23&me test for a celiacs variant. So i'm not sure if 23 and me picks up all the genes? 

  • Solution
Scott Adams Grand Master
Scott Adams
Posted
  • Solution

23 and me should work for most of the basic genetic markers (I'm not sure about the other company, but it would likely be fine as well).

He may also want to try this for a blood screening on his family: https://www.imaware.health/

Interestingly, my daughter's main symptom was the feeling that there was always food stuck in her throat/esophagus, when there wasn't. She had elevated enzymes but was just below the cut off for celiac disease, but went gluten-free because of the throat symptoms, which went a way after she went gluten-free.

 

asaT Apprentice
asaT
Posted
  • Author
On 10/21/2022 at 10:36 AM, asaT said:

I was just diagnosed a few weeks ago and now some family members are being tested, just wanted some input on that.

I have the HLA-DQ2.5 gene haplotype according to 23&me and so does my brother. He has yet to go in and get antibody testing. He has 3 boys. One (12y.o at the time)has been diagnosed with UC and had negative antibody titer when that was done (but no s.i. biopsy). The other one (10 y.o at time) had upper gi scope for swallowing problems and had a s.i. biopsy which was negative for celiacs, it seemed to be an esophageal problem. No known problems with the third youngest one. He wants to do genetic testing on them before doing anything else. His insurance is horrible and won't pay for anything so he is looking at the tests you can order online. 

My question is, is the 23 and me test sufficient? the other one we were looking at is this: https://rxhometest.com/product/search/celiac

They are both $129, but the 23&me obviously has a lot more extra info other than the celiacs. Which one should they do? Or any other recomnendations?

Thanks!

Asa

Thanks for the info Scott. Hopefully we will get some answers soon. The one with the swallowing problems had a biopsy which they said ruled out celiacs, but only one sample was taken and no blood test was done that i am aware of, but its possible he just didn't tell me. I think he would have though because i have been a pain in the ass about it. now i have to tell him that one sample is not a good test. i think i'll wait til the genetic tests come back though. if he has the gene then i'll mention it, if not, then i can stop talking about it!

Scott Adams Grand Master
Scott Adams
Posted

I think it would be worth asking if they did a blood test, and if so, try to get the results and share them here. Either way, note that there is a condition called non-celiac gluten sensitivity which around 10x more people have than celiac disease, and unfortunately they have not yet developed a test for it. It may make sense to just try out the gluten-free diet after all celiac testing is done, just to see if symptoms improve. Note that a gene test won't be affected either way when someone is on a gluten-free diet, but celiac disease tests will be affected (patients should continue eating gluten until all celiac testing is finished).

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    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
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      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
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      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
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      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
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      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
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      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...