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

Got The Genetic Test Done, Have The Gene, Now What?


still.joyful

Recommended Posts

still.joyful Apprentice

Hi All,

Haven't been on here in awhile...so this is what's been going on...

1. I was tested (blood) for celiac disease 2 years ago and the test came back negative

2. This past summer my GP told me to go on the gluten free diet because she thought I was gluten intolerant.

3. Go gluten free for months, get glutened while traveling in January and get VERY SICK

Come back home, go to the doctor

4. Sigmoidoscopy is normal; no crohn's and no colitis (had an mri of my stomach, everything looks good)

5. Finally, Gastro does the genetic test for Celiac disease. I test positive for the HLA DQ8 Gene. Not sure how to read the rest of the info, haven't spoken with the doctor (the results were faxed to me just now).

Other symptoms: mouth sores every two weeks, reproductive issues, 'Irritable bowel syndrome', asthma, can't gain weight worth a dime!

I've tested negative for everything...until now, finally a positive test...I never thought I'd be so relieved...but now I'm paranoid lol

What are the chances that I can have Celiac disease if I have the HLA DQ8 gene??????? THANKS!


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



Celiac.com Sponsor (A8-M):



dadoffiveboys Rookie
Hi All,

Haven't been on here in awhile...so this is what's been going on...

1. I was tested (blood) for celiac disease 2 years ago and the test came back negative

2. This past summer my GP told me to go on the gluten free diet because she thought I was gluten intolerant.

3. Go gluten free for months, get glutened while traveling in January and get VERY SICK

Come back home, go to the doctor

4. Sigmoidoscopy is normal; no crohn's and no colitis (had an mri of my stomach, everything looks good)

5. Finally, Gastro does the genetic test for Celiac disease. I test positive for the HLA DQ8 Gene. Not sure how to read the rest of the info, haven't spoken with the doctor (the results were faxed to me just now).

Other symptoms: mouth sores every two weeks, reproductive issues, 'Irritable bowel syndrome', asthma, can't gain weight worth a dime!

I've tested negative for everything...until now, finally a positive test...I never thought I'd be so relieved...but now I'm paranoid lol

What are the chances that I can have Celiac disease if I have the HLA DQ8 gene??????? THANKS!

I am DQ8 / DQ4 - I have problems with Gluten. Your asthma is probably caused by REFLUX from eating gluten. I would bet 6 months to 1 year gluten-free would relieve your Asthma. IBS is probably due to gluten too. You may not have full blown celiac, but you probably shouldn't ever eat it again. I get terrible back pain from gluten, my dad had 30 years of stomach problems. I get (and my dad) mouth problems from gluten. Mouth sores CAN be a sign of Dermatitis Herpetiformis - another symptom of gluten. I would go and stay gluten-free for a while and see how you feel.

nora-n Rookie

The blood tests are only about 50-80% sensitive for picking up full-blown celiac, and much less sensitive to low-grade celiac......often they set the cutoff high so that only few people test positive.....I guess you just are one of those it misses.

Many people only test positive on one of all the different tests. You probably only had one of them.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,033
    • Most Online (within 30 mins)
      7,748

    davidvibezb
    Newest Member
    davidvibezb
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.