Negative Genetic Markers

[wjane60]

My 15 year old daughter has been c/o stomach bloating and pain around her umbilicus for the last year, but worsening this summer. She also has stools that float. Her medical hx is unremarkable, except for ankle surgery over the summer for a broken ankle. Well to make a long story short, I could not get an appointment with a gastro guy for over a month, so i started her on a gluten free diet. My sister has celiac so i am very familiar with the diet. By day three on the diet she was improved. She was feeling great. I ended up getting an appointment due to a cancellation and brought her in a week later. Her genetic markers came back negative, so celiac is ruled out. Since she has been on the diet she feels great. When she accidently ingests gluten, she becomes sick. Her doc said she has IBS.

Can anyone explain? Can you have celiac with negative genetic markers.

HELP!!

If she does not have celiac, why does she feel so great on the gluten free diet?

Thanks

Leigh

[Rachel--24]

2% of celiacs have DQ1...which is not tested for. Also they havent found all the genes involved yet. My GI wouldnt rule out celiac based on my genes alone. I dont have DQ2 or DQ8.

I have DQ1 and DQ3 which are gluten sensitivity genes and can cause severe symptoms and also damage to the body but usually not the villi damage that is seen in celiacs. Its no less serious though. You can get tested for these genes at Enterolab...I'm not sure if anyone else tests for the seneitivity genes.

[Carriefaith]

Can anyone explain? Can you have celiac with negative genetic markers. HELP!! If she does not have celiac, why does she feel so great on the gluten free diet?

I don't believe that they have found all the genes that cause celiac disease so it is possible that she could still have it. If she doesn't have celiac disease, she could be intolerant or sensitive to gluten. The tissue transglutamase blood test (tTg) or the intestinal biopsy would tell you if she had celiac disease. However, she must be consuming gluten in order for these tests to be accurate.

Since she has been on the diet she feels great. When she accidently ingests gluten, she becomes sick. Her doc said she has IBS.

This leads me to believe that your daughter has issues with gluten. If she is having symptoms of IBS, then it is probably due to celiac disease or to an intolerance to gluten. I beleieve that IBS is just an irritable bowel caused by something else. The bowel becomes irritated by something (gluten) and then the bowel starts rejecting all food. I had this happen to me before.

[cornbread]

As the others have said, there are 'gluten sensitive' genes too. I would suggest a gene test through www.enterolab.com. They will tell you what the genes are and whether they are gluten sensitive ones. Also maybe get their stool test for gluten antibodies, if she's not been gluten free for too long. But regardless of an antibody result, the answer is in her reaction to a gluten-free diet. Even if it's not Celiac, it is clearly a gluten intolerance, and that can cause as much discomfort and as many health issues as classic villi-damaging Celiac. Gluten intolerance is gluten intolerance. To give someone the diagnosis of a disease *only* when it is at it's worst point (biopsy proven intestinal damage) is ridiculous! They don't do that for other diseases - you either have it or not. I think the whole gluten-free lifestyle would be much easier for us all if more people could get an official diagnosis of *something*. There is a public suspicion for self-diagnosed dietary restrictions which makes an already difficult lifestyle a lot harder than it needs to be.

[mommida]

I didn't test positive on my genetic test either. Strange thing that my biological daughter tested positive for DQ2 and DQ8. Prometheus labs would not do the test over again and said that the test has a 2% error rate, genes mutate, and every single blood draw test has a 30% error rate.

My daughter and I have had a 100% improvement on the gluten free diet.

I firmly believe they have not isolated every Celiac gene/gluten sensitive gene.

Laura