For those of us who are parents of celiac kids, most or nearly all of our kids had an endoscopy and biopsy to diagnose celiac disease. Now new research says some kids may not need to have the biopsy – which is considered the “gold standard” in diagnosing celiac.
This month the Journal of Pediatric Gastroenterology and Nutrition reports children who have the celiac gene and test positive in serologic (blood) testing, may not need to have the biopsy.
The University of Maryland’s Center for Celiac Research Celiac FAQ says the gene: “HLA DQ2 and/or DQ8 are absolutely necessary to develop the disease…Conversely, the absence of DQ2/DQ8 almost certainly rules out CD.”
Researchers in this study did biopsies on 170 children with digestive issues or malnutrition. 82 of them had partial or total damage do the villi in the intestine (which you need to diagnose celiac), another 80 didn’t. Researchers also did serological and genetic testing on the kids. What do you know? 81 of the 82 with damage to the villi had the genetic markers for celiac and positive serological testing. In the other group the majority tested negative for the gene and in the serologic blood test.
Researchers concluded that you may not need to get the biopsy for your child with positive HLA DQ2 and/or DQ8 and blood tests. As for the others, they said, “HLA-DQ2/DQ8 could be useful to exclude the diagnosis of CD if negative. In cases of low IgA tTG titers or in patients with IgA deficiency, intestinal biopsy remains mandatory.”
Maybe this information will be helpful to some parents and doctors some day!
*One added note that I found interesting: there were three kids who didn’t have villi damage, who were positive for the blood test and the gene test…While doctors didn’t elaborate on them, I wonder if the were told to go gluten free or not??
Tags: celiac, diagnosis, disease symptoms, gluten-free, research
May 19th, 2011 at 5:21 pm
MY GRANDSON WAS DIOGNOSED IN JAN.11 WITH CELIAC AND LIVER DISEASE..HE IS WAY OVER WIEGHT.HES 8 YRS OLD 4FOOT 10 HE WIEGHED 169 LBS..SINCE JAN 15 11 HE WENT GLUTEN FREE HE IS DOWN TO 151 LBS.HIS OTHER PROBLEMS ARE HE POOPS AND PEES HIS PANTS STILL ITS DRIVING EVERYONE CRAZY..AT AGE 5 THEY SAID HE HAS ENCOPRESIS..NOT GETTING GOOD ANSWERS.
May 20th, 2011 at 8:50 pm
You raise a great point about whether the “non-celiacs” were advised to go on a gluten-free diet. The problem with the strict celiac disease diagnosis is that it ignores the substantial number of people who don’t fit in neatly into this category. There seems to be more of a spectrum from gluten-sensitivity to full-blown celiac disease, and I have heard of too many cases where patients were turned away because they didn’t fit the simple CD criteria.
P.
May 30th, 2011 at 9:36 am
My daughter is one of those children who had an extremely positive Ttg and a positive DQ2, but when biopsied, the biopsy came back negative. Our doctor advised us to go gluten free with her anyway. She’s been GF for almost three years, and her stomach aches have completely gone away and subsequent Ttg tests have come back with numbers that continue to drop. Additionally, my daughter has an immediate reaction to the slightest amount of cross contamination. The proof is in the pudding for us!