2 replies to this topic

[ftmomma]

I'm new here, first post....please bear with me as I learn the ropes in the forum. Not sure if I'm posting this question in the right place, but hope someone checks it out :-)

Reader's Digest Version: I have not been feeling "right" since about 8 weeks after the birth of my baby (uncomplicated pregnancy and childbirth). GI issues, severe abdom. issues (2 ER visits), joint pain, peripheral neuropathy (hands/feet) and weight loss (25lbs in about 5 months).

Celiac panel was done twice. Both showed normal results. GI dr still wanted to do endoscopy. 1 in Dec and another in May. Both show white blood cell infiltration (patches in various parts) and inflammation. Then sent me for Genetic bloodwork. Tested positive for HLA - DQ2 and negative for HLA -DQ8. Have been gluten free since July 1 (while waiting for results) my waistline has decreased by 3 inches (and I haven't lost weight). Feel so much better already! (which I know should be more of an indication on what I should do even more so than test results)

Still waiting to get a call from my GI dr re: the genetic testing. He usually calls with reports after hours. I actually got the report from my primary care dr at an appointment this afternoon. She stated that since I only have 1 of the genes "I probably don't have Celiac because my initial antibody tests were negative". She didn't think it was necessary for my immediate family or my children to be tested, because I only have "1 of the genes".

Is this true??? How often or common is it that people with celiac would carry both the DQ2 and the DQ8? I realize that just beacuse someone may have the genes, it may not be a clear cut case that they also have Celiac. But if they have a gene, inflammation in small intestine and symptoms, why would she still be thinking it might be something else?

ok---so much for the short version- thanks for any info!

[happygirl]

You don't need both genes to have Celiac. If you had neither gene, and negative tests, then Celiac could essentially be ruled out.

I think its a small percentage of Celiacs who have both genes.

http://www.celiacdis...C05-Testing.htm
http://digestive.nid...dex.htm#genetic
http://www.celiac.or...&id=7&Itemid=13
http://www.celiacdis...cScreening4.pdf
http://en.wikipedia..../Celiac_disease

[Skylark]

One copy of DQ2 or DQ8 confers some risk for celiac disease. No current genetic test gives a clear-cut result. There is a dosage effect, meaning the risk is higher with to copies of DQ2 or DQ8. Having no "celiac" genes doesn't even rule out celiac, as some folks on this board can tell you. We don't actually know all the genes involved. HLA-DQ is just the tip of the iceberg.

Your doctors need to rule out inflammatory bowel diseases if you don't have celiac antibodies. Those can cause inflammation and abnormal biopsies too, although I think the neuropathy and your response to a gluten-free diet is more suggestive of celiac (or gluten intolerance). Going gluten-free is actually helpful for a lot of GI problems, so they're taking a cautious approach since you got so sick. Keep right on eating gluten-free and let them make sure there are no other problems that need to be treated.