HLQ DQ2 DQ8 ??

[JodieAL]

Hi,

I am in the process of being tested for celiac. Having had a gastroscoposy, ( I was gluten free, but went back onto gluten for two weeks before, as the doctor recommended) but they lost my lab results ? so cannot confirm Celiac. 

My doctors have now done the genetic test HLA DQ, saying if I am positive they will do a enteroscopy. 

I have come back negative for DQ2 but positive for DQ8. Can anyone help explain what this means please!? 

 

[cyclinglady]

It means you have one of the genes associated with celiac disease.  It does not confirm celiac disease because some 30% of the population carries these genes but only a few go on to develop celiac disease.  

But more importantly......THEY LOST YOUR PATHOLOGY REPORT?  How awful!  Did the GI note anything on the endoscopy?  Did that report get lost too?   In the  past the endoscope was not able to visually see microscopic damage.  In my case, my last endoscopy you could actually see my healed villi.  My clinic had the newest scopes.  

Genes or not, you should consider reporting this error to the medical board and they should repeat the endoscopy regardless.  It sounds like you are in the UK since you called the scope by a different name.  Not sure what recourse you have.  

I hope it gets all sorted out.  My heart goes out to you if you have to do another gluten challenge.   

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

https://www.verywellhealth.com/celiac-gene-test-562532

[JodieAL]

7 hours ago, cyclinglady said:

It means you have one of the genes associated with celiac disease.  It does not confirm celiac disease because some 30% of the population carries these genes but only a few go on to develop celiac disease.  

But more importantly......THEY LOST YOUR PATHOLOGY REPORT?  How awful!  Did the GI note anything on the endoscopy?  Did that report get lost too?   In the  past the endoscope was not able to visually see microscopic damage.  In my case, my last endoscopy you could actually see my healed villi.  My clinic had the newest scopes.  

Genes or not, you should consider reporting this error to the medical board and they should repeat the endoscopy regardless.  It sounds like you are in the UK since you called the scope by a different name.  Not sure what recourse you have.  

I hope it gets all sorted out.  My heart goes out to you if you have to do another gluten challenge.   

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

https://www.verywellhealth.com/celiac-gene-test-562532

Thank you for your reply! You have clarified my confusion! 

Yes, I am based in the UK, and am going through this process with the NHS ( free healthcare available to all UK citizens) ...this situation is unfortunately not the first time I have personally encountered mistakes of this magnitude. I have also had colonoscopies done where biopsies were not taken, so deemed inconclusive, so ultimately pointless. Plus a number of other mistakes to numerous to list! Unfortunately we do not have the same resources here for formal complaints as you do in the US. 

The GI found no evidence of celiac during the gastroscopy ( but I’m now wondering if a two week gluten challenge was long enough)  I have Hashimotos, another autoimmune disease, osteoarthritis, IGA responses and DH blisters, plus gastrointestinal issues, hence the possibility of Celiac. 

Very interesting to know that that older scopes ( as probably used by the NHS) do not detect low levels of vili damage. 

I am dreading the thought of going back onto a Gluten challenge diet, but know I need to get a clear diagnosis for me, and my children. 

Thank you so much for your help! 

[GFinDC]

Hi,

If you have DH, you have celiac disease.  Only people with celiac disease get DH.  So it might be better to go for a DH diagnosis since that testing is less invasive than the endoscopy / gastrocopy.   The gluten challenge for DH is 12 weeks of eating a small amount of gluten.  But the test is to take a small skin biopsy from next to a lesion, vs an endosocpy / gastroscopy.