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

Need Help With Genetic Testing Results Dr Was Clueless.


Not crazy

Recommended Posts

Not crazy Rookie

I have been eating gluten for over a year so my GI did genetic testing. When I tried to ask about the results he looked at me like I was crazy and could only repeat what was wrote on the paper "celiac gene pairs are present". Then after I refused to do a 2 month gluten challenge to be tested he told me there wasn't anything else he could do and sent me on my way.

DQ alpha1: 01,03

DQ beta 1: 03:02,05

If someone could help me figure out which I have (DQ2,DQ8) it would be great. I tried to look at the Wikipedia links posted but the only Internet access I have is my phone and it wasn't working to well.

Thanks


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I have been eating gluten for over a year so my GI did genetic testing. When I tried to ask about the results he looked at me like I was crazy and could only repeat what was wrote on the paper "celiac gene pairs are present". Then after I refused to do a 2 month gluten challenge to be tested he told me there wasn't anything else he could do and sent me on my way.

DQ alpha1: 01,03

DQ beta 1: 03:02,05

If someone could help me figure out which I have (DQ2,DQ8) it would be great. I tried to look at the Wikipedia links posted but the only Internet access I have is my phone and it wasn't working to well.

Thanks

I don't have any expert knowledge on genetic testing since I was only tested for antibodies and had the endoscopy.  What I have read is that gene testing only determines if you are at risk for celiac disease.  

 

Here's a link that might be helpful:

 

https://www.celiac.com/articles/21567/1/Ten-Facts-About-Celiac-Disease-Genetic-Testing/Page1.html

 

Your GI might not be an expert on explaining the lab results, but the message was clear:   "celiac gene pairs are present"

 

 

So, it looks like you have the risk of getting celiac disease.   You can do two things:  1)  consume gluten for the next two to three months, get the antibody tests and/or the endo, or 2) stay away from gluten as it appears you have been doing for the last year (not clear on your message).  

 

 

 

 

Not crazy Rookie

Sorry. That should of said I have been eatting gluten FREE for over a year. The GI did the genetic tests to rule out celiac since blood tests wouldn't be helpful. One dr ran half the blood tests even after I explained I had been gluten free for a year. So wasn't surprised they were negative. But the negative results just made him think its all in my head more then he already thought. (He said I just needed to excerise more, take some antidepressants and some sleeping pills)

Guess what I'm asking is, based on my results do I have HLA DQ 2 or the HLA DQ 8 gene. I know I have the genes I just don't know which ones.

The GI wanted me to do a gluten challenge since I do have the genetics but I refused. There is no way I could handle 2 months of gluten. I tried one meal with gluten. Took a week before I could eat anything with out feeling like I was going to throw up. Joint bone and muscle pain came back along with brain fog, mood swings and anxiety. Another time i Had to work in the kitchen at work 3 times within a couple weeks. Ended up with an anxiety attack and so much pain and brain fog I missed 2 weeks of work. Doctor put a restriction of no kitchen on my FLMA papers when I returned. HR didn't like that and I lost my management position because I can no longer preform all the job requirements.

cyclinglady Grand Master

Looks like your're on the right track!  

 

My husband's been gluten-free for 12 years.  No one thought to test him for Celiac Disease, but two docs (his GP and my allergist), suggested giving up wheat/gluten.  It took a year for him to realize that he really did have a problem with gluten.  He now refuses to do a challenge (why bother?)  He's happy and now our household is pretty much gluten-free except for some packaged snacks for my daughter's lunches.  

 

So sorry to hear about your work and health issues.  Hopefully, things will continue to improve for you (and for me too!)

frieze Community Regular

I have been eating gluten for over a year so my GI did genetic testing. When I tried to ask about the results he looked at me like I was crazy and could only repeat what was wrote on the paper "celiac gene pairs are present". Then after I refused to do a 2 month gluten challenge to be tested he told me there wasn't anything else he could do and sent me on my way.

DQ alpha1: 01,03

DQ beta 1: 03:02,05

If someone could help me figure out which I have (DQ2,DQ8) it would be great. I tried to look at the Wikipedia links posted but the only Internet access I have is my phone and it wasn't working to well.

Thanks

you need Nora!  and where is the other half?

pricklypear1971 Community Regular

I have been eating gluten for over a year so my GI did genetic testing. When I tried to ask about the results he looked at me like I was crazy and could only repeat what was wrote on the paper "celiac gene pairs are present". Then after I refused to do a 2 month gluten challenge to be tested he told me there wasn't anything else he could do and sent me on my way.

DQ alpha1: 01,03

DQ beta 1: 03:02,05

If someone could help me figure out which I have (DQ2,DQ8) it would be great. I tried to look at the Wikipedia links posted but the only Internet access I have is my phone and it wasn't working to well.

Thanks

There has to be more on the report than that. Any more writing, anything....details about the alleles??? What lab did the testing?

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. - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      8

      Feel like I’m starting over

    2. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      8

      Feel like I’m starting over

    3. - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      34

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - Iam replied to Larzipan's topic in Related Issues & Disorders
      34

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,308
    • Most Online (within 30 mins)
      7,748

    somersgoldens
    Newest Member
    somersgoldens
    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

    • Scatterbrain
      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
    • knitty kitty
      Vitamin and mineral deficiencies can make TMJ worse.  Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain.  Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease.  It's important to eat healthy nutrient dense diets like the Autoimmune Protocol Diet, a Paleo diet that has similarities to the Mediterranean diet mentioned in one of the studies.   Is there a link between diet and painful temporomandibular disorders? A cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC12442269/   Nutritional Strategies for Chronic Craniofacial Pain and Temporomandibular Disorders: Current Clinical and Preclinical Insights https://pmc.ncbi.nlm.nih.gov/articles/PMC11397166/   Serum nutrient deficiencies in the patient with complex temporomandibular joint problems https://pmc.ncbi.nlm.nih.gov/articles/PMC2446412/  
    • Iam
      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
×
×
  • 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.