Jump to content
  • 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

No One On Moms Side Has Celiac


jasonD2

Recommended Posts

jasonD2 Experienced

This is lousy for me to say but I am almost disappointed that none of the women on my moms side have celiac...they all just got tested. I feel like im all alone in this and still dont know where its coming from..I guess my fathers side? Why am I the only one that got the bad side of the stick? sorry for sounding horrible


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



Celiac.com Sponsor (A8-M):



burdee Enthusiast

Hi Jason:

I can think of worse things ... like fighting 5 parasites at the same time. You've been through the wringer with gut infections. With celiac disease, 6 food allergies, after 5 bacterial, 2 parasitic and candida infections, tracing who gave me celiac disease is the least of my worries. I pm'd you about my latest (acid production test results, treatment for h. Pylori and ongoing battle with d-frag). My new doc also recommended a good doc in NYC who deals with stomach acid, intestinal critters and food allergies, after I told her I had a friend 'back East'. (I have no idea where you live, but you mentioned relatives in FLA.)

SUE

ravenwoodglass Mentor

This is lousy for me to say but I am almost disappointed that none of the women on my moms side have celiac...they all just got tested. I feel like im all alone in this and still dont know where its coming from..I guess my fathers side? Why am I the only one that got the bad side of the stick? sorry for sounding horrible

Not everyone who has the celiac associated genes will develop the disease. Where you got the genes from is not all that important. The important thing is you are doing the best you can to overcome the issues that you have. There is also the issue of false negatives on testing. If family members have health issues just because they had a negative blood test doesn't mean they don't have celiac.

I hope you are feeling better yourself by now and kudos to you encouraging your loved ones to be tested.

Skylark Collaborator

I understand you're looking for a little validation, but of course it's good news that others in your family are not celiac. With celiac, there seems to be a necessity for a triggering event. In your case it could have been the Giardia infection. Developing celiac seems to take some time so the blood work does not always come back positive for celiac right away.

Everyone with a chronic disease asks those kinds of questions. Feeling like you got the short end of the stick sometimes is normal but you have to find a way of avoiding feeling that way all the time. It's a really hard, painful way of looking at things, to make yourself out to be shortchanged. I always feel better if I focus on the positive aspects of my life rather than the celiac diet (and my asthma and frequent bronchitis).

Gemini Experienced

This is lousy for me to say but I am almost disappointed that none of the women on my moms side have celiac...they all just got tested. I feel like im all alone in this and still dont know where its coming from..I guess my fathers side? Why am I the only one that got the bad side of the stick? sorry for sounding horrible

Jason....just because no one tested positive on the antibody test, doesn't mean they don't have Celiac. It could be a case of latent Celiac or silent Celiac with negative antibody testing. Happens all the time. You are supposed to be tested at least every 2 years, with a diagnosed family member as history. If they think that they can have 1 blood test and call themselves safe, it doesn't work that way.

The smarter thing to do would be for them to do gene testing, along with the antibody testing, for obvious reasons. What about your father's side of the family? Is your father living?

Mari Contributor

Sorry you are feeling 'down' but if you have a copy of the test which showed the DQ8 it would tell you if you inhertited one or two copies of that DQ gene. We get one from our mom and one from our dad as you know. The DNA genetic marker test is easier to read but if you had the molecular serology test from Prometheus Labs it is harder to intrepret but you can post the results here and maybe we can help you figure it out.

jasonD2 Experienced

Oh no what i meant was they dont have the genes for celiac


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Oh no what i meant was they dont have the genes for celiac

Odd. Isn't this the side of your family with all the GI issues? Maybe you were found on the doorstep? :)

ravenwoodglass Mentor

Oh no what i meant was they dont have the genes for celiac

Neither do I. ;)

I sure do have celiac though. :)

Your DQ8 may have come from your fathers side. But you can have celiac and not have either DQ2 or DQ8.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,207
    • Most Online (within 30 mins)
      7,748

    WAB19
    Newest Member
    WAB19
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.