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Need Help With Genetic Testing Results Dr Was Clueless.

Not crazy

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Not crazy Rookie
Not crazy
Posted

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

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cyclinglady Grand Master
cyclinglady
Posted

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
Not crazy
Posted
  • Author

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
cyclinglady
Posted

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
frieze
Posted

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
pricklypear1971
Posted

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?

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      I don't see how cornstarch could alter the test results. Where did you read that?
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    • Julie 911
      Medication

      By Julie 911 · Posted

      No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 
    • trents
      Medication

      By trents · Posted

      Did the GI doc give you any rational for stopping the Tylenol during the gluten challenge? I have never heard of this before and I can't imagine a good reason for it. Ibuprofen, maybe, because it is an anti inflammatory but acetaminophen?  I don't see that it would have any impact on the test results to take Tylenol.
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