Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Genetic tests

asaT
 Share
Go to solution Solved by Scott Adams,

Recommended Posts

asaT Rookie
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 Rookie
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 Rookie
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

  • 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. daniellelawson2011
      - daniellelawson2011 replied to daniellelawson2011's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Lab results

      Thank you for the welcome and reply. The first test was tissue transglutaminase IGA and it was normal. The second test just simply says IGA and it was 638. You definitely answered my question, it sounds like im negative for celiac since the 1st test was normal, and that another condition has caused the abnormal result of the IGA. That's exactly what I was...
    2. trents
      - trents replied to daniellelawson2011's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Lab results

      Welcome to the forum, @daniellelawson2011! First, we need to deal with terminology here. When you refer to the "ttg" test I take that to mean the ttg-iga. And when you refer to the "iga" test I take that to mean total iga since the magnitude of the score would suggest that. Total iga is not a test for celiac disease per se. It is run in order to check...
    3. daniellelawson2011
      - daniellelawson2011 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Lab results

      After struggling with many different symptoms for years with no diagnosis, I decided to do my own research and I stumbled upon an article about celiac disease. I asked my PCP to order a ttg and iga. The results: the iga was high at 638. The ttg was negative. Of course I will discuss with my doctor, but i would like to hear from people that have went through...
    4. Joe R
      - Joe R replied to Joe R's topic in Related Issues & Disorders
      2

      Immunologist Referral if IgA Deficient

      Thank you for your advice. I appreciate the help.
    5. nanny marley
      - nanny marley replied to nanny marley's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Help needed

      Thankyou so much for your reply I decided to skip the senna has I've already had very loose stools last few days I've cut my portions down on the low fiber diet too and drinking lots of liquid has I just thought it would be wise to listen to myself too I've probably already done wat the senna would of done myself naturally by drinking clear apple juice which...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,685
    • Most Online (within 30 mins)
      7,748
    Pat Gamble
    Newest Member
    Pat Gamble
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • daniellelawson2011
      Lab results

      By daniellelawson2011 · Posted

      Thank you for the welcome and reply. The first test was tissue transglutaminase IGA and it was normal. The second test just simply says IGA and it was 638. You definitely answered my question, it sounds like im negative for celiac since the 1st test was normal, and that another condition has caused the abnormal result of the IGA. That's exactly what I was wondering. Im almost positive I have MS and I've read results are higher like that with early onset. Or it could be IBS. Hopefully the visit with the neurologist will give me even more answers and point to a final diagnosis. I really appreciate you taking the time to reply and for helping. Thank you so much!
    • trents
      Lab results

      By trents · Posted

      Welcome to the forum, @daniellelawson2011! First, we need to deal with terminology here. When you refer to the "ttg" test I take that to mean the ttg-iga. And when you refer to the "iga" test I take that to mean total iga since the magnitude of the score would suggest that. Total iga is not a test for celiac disease per se. It is run in order to check for iga deficiency. If you are iga deficient, then the ttg-iga and other iga tests that are specific for celiac disease will be abnormally low and this would potentially produce false negatives. You are not iga deficient but, rather, your total iga is abnormally high. This can suggest underlying health conditions, some of them can be serious in nature.  https://labs.selfdecode.com/blog/high-iga/ "High IgA usually points to chronic infections or inflammation, though many disorders can raise its levels. High IgA does not cause symptoms. People show symptoms from their underlying health problem." One thing I might add and that is you must have been eating normal amounts of gluten for weeks/months prior to the blood draw for antibody testing. Testing while on a gluten free or gluten reduced diet will not yield valid results. Also, here is a primer outlining the various antibody tests that can be ordered to check for celiac disease:  
    • daniellelawson2011
      Lab results

      By daniellelawson2011 · Posted

      After struggling with many different symptoms for years with no diagnosis, I decided to do my own research and I stumbled upon an article about celiac disease. I asked my PCP to order a ttg and iga. The results: the iga was high at 638. The ttg was negative. Of course I will discuss with my doctor, but i would like to hear from people that have went through the process of diagnosis to maybe give me some insight on what this means and where to go from here. Also of note, i had a brain mri which showed white lesions which arent typical at 44 years old. I have many MS symptoms. I go to the neurologist on Tuesday, but just curious if anyone knows if there is a correlation between iga and MS. I appreciate any help! Thanks!
    • Joe R
      Immunologist Referral if IgA Deficient

      By Joe R · Posted

      Thank you for your advice. I appreciate the help. 
    • nanny marley
      Help needed

      By nanny marley · Posted

      Thankyou so much for your reply I decided to skip the senna has I've already had very loose stools last few days I've cut my portions down on the low fiber diet too and drinking lots of liquid has I just thought it would be wise to listen to myself too I've probably already done wat the senna would of done myself naturally by drinking clear apple juice which if not on the diet I would have to avoid anyways has I don't tolerate many fruit juices so I'm sure I've done the right thing I did try to contact the department on my letter but weirdly enough it was ringing but then after a while saying wrong number 🤷 but again I'm positive I've done the right thing I'm going to take today very lightly too with low portions and more liquids so yes thankyou for that advise I am very nervous but I have had time to think and read other peoples experiences and not all are bad there is some good advise and reassuring information from people who do these all the time so I'm trying my best to be positive so I can at least settle my mind knowing im doing this to help my own health has this year has been a rollercoaster for me cutting out gluten and lactose was a good idea but I still get flare ups and other symptoms so it definitely is worth a check like you said it was the calprotein that prompted the doctor to refer me again thankyou for your reply it's means a lot for someone to take the time to listen and respond and give uplifting advise  especially to me just now has I'm a bundle of nerves inside getting closer to tomorrow prep so thankyou for that 🙏
×
×
  • Create New...