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.

  • 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. - trents replied to Ginger38's topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Ginger38 posted a topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

    3. - Russ H commented on Scott Adams's article in Latest Research
      5

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

    4. - Russ H posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Coeliac UK Research Conference 2025

    5. - Rejoicephd replied to Rejoicephd's topic in Related Issues & Disorders
      5

      Basic metabolic panel results - more flags


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,378
    • Most Online (within 30 mins)
      7,748

    mlenn51
    Newest Member
    mlenn51
    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

    • trents
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
    • Ginger38
      I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry.   But Developing shingles has me a bit concerned about my immune system which also has me wondering about celiac and if there’s a connection to celiac / gluten and shingles; particularly since I haven't been 💯 gluten free because of all the confusing test results and doctors advice etc., is there a connection here? I’ve never had shingles and the gluten/ celiac  roller coaster has been ongoing for a while but I’ve had gluten off and on the last year bc of all the confusion  
    • Russ H
      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
×
×
  • 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.