Antibody Test Negative, HLA Positive.. Confused.

[ry350]

Hi all.

Recently I have been having nerve pain in the occipital region, some up and down my neck and some peripheral neuropathy (not often).

I have had 2 MRI's on brain and inner ears and - unless theyve been read and the reports were compiled by donkeys - they are all clear.

I had Coeliac screening last year. As follows :

Antibody Bloods = Negative (I was not eating much gluten - if any at all).

HLA DQ2 & HLA DQ8 = Positive (Both results together confused my specialist, who ordered an endoscopy).

Endoscopy found no immediate evidence of Coeliac but the biopsies did show duodenitis. (Again - stupidly - I was not eating gluten. I think in 6 weeks I had 2 slices of toast).

Now, lately - alongside my aforementioned nerve pain - I have been having nausea, bloating and some dull, abdominal discomfort. I ate some gluten a week back and immediately after, I felt hideous (bloating, nausea).

I have two questions:

(a) How possible is it for me to have Coeliac, given my discrepancies in the results?

(b) Could Coeliac disease cause these myalgia type pains, this abdominal discomfort and the duodenitis?

Im just trying to cover all bases and get to the bottom of why I have felt like this for quite a while now.

Thanks.

[GFinDC]

Hi ry350,

Celiac antibody testing is not valid if you weren't eating gluten for 12 weeks before the blood draw.  The endoscopy shouldn't be done until at least 2 weeks of eating gluten daily.  So your celiac tests don't mean much at all.

Another test that you could do is a vitamin and mineral levels test.  That might find something low which could indicate celiac disease.  Celiacs tend to have low vitamin D and B's, also copper and magnesium.  Those deficiencies often resolve after going gluten-free though.

[cyclinglady]

GFinDC is absolutely correct.  All celiac disease testing requires you to be on a full gluten diet (1 to 2 slices per day or equivalent.  Based on two slices of toast in six weeks, it is no wonder that you received negative results.  Did the GI or your GP know that you were gluten free or light?  Maybe you can do a gluten challenge and re-test if you really need a diagnosis, or just go gluten free for life.  Lots of people end up doing just that.  

Celiac disease is autoimmune and systemic.  So, yes, it can cause off the issues you listed.