2 replies to this topic

[Lisa79]

Hi Everyone

Me and my daughter (6yrs old) were diagnosed a year ago with celiac disease. \
My son (4yrs old) tested negative to blood test last year.

Me and my daughter just had our 12 month blood test so I asked for my son to be tested again, I thought might as well since we were both having our tests done make it a family affair Turned out Positive, no major symptoms so I am glad I requested him to be tested again. Now looking I guess maybe I can see a few symptoms, bad wind, lack of appitite, dark rings under his eyes.

So we are waiting now waiting to see the Gastroenterologist for the biopsy.

What are the chances of a negative Biopsy these days??? I really hope its positive, sounds silly but if its negative, I just don't understand why he would have a positive blood test and I had a negative Biopsy 10 yrs ago. I suffered for the last 10 years, with Gallbladder problems (now removed) and Ovarian Cysts, hospital visits, ultrasounds, x-ray, IBS, osteopenia, low iron levels, headaches, multiple food intolerances. So I don't really trust the biopsy. We were tempted to not even bother, but I guess you need to do the correct diagnoses.

Oh well just wait and see

[Kay DH]

If you take your son for an endoscopy/biopsy make sure the GI takes multiple pictures for you to see and multiple biopsies. Especially with early Celiac the damage to villi tends to be spotty. Also ask if there would be damage to the villi if the celiac was caught so early. That you have the family history helps a lot; I did not know my family history beyond my Grandmother died when I was little and Dad was her only child.
My symptoms started last fall after getting the flu. I went gluten-free about a month later because of the D and other symptoms. I got the Celiac blood panel a couple of months later. It was negative, but being gluten-free can result in false negatives. So, 6 months after going gluten-free I went to a GI (his group was recommended by the local Celiac website) and he said all my symptoms were due to diverticulitis. He dismissed most of my symptoms, such as brain fog and the skin rashes that went away after gluten-free, my HLA-DQ8 only gave me a 10% chance of Celiac, etc. He said my Dad died of stomach cancer because of rural food storage techniques when Dad was a child; this was his conclusion based on no data. He was sure I only needed to be on the gluten challenge for 1 week, so I was sick for a week before the endoscopy/colonoscopy. Needless to say, the massive number of colonoscopy biopsies were all negative and there were no diverticuli. The endoscopy showed minor GERD, and he only took one biopsy and one picture of my duodenum, which was negative.

[cassP]

yes- EXACTLY everything above poster said! they have to take several biopsies from different areas in the small intestine. whether 1 or several biopsies- false negatives ARE common.
after the biopsy, i would go ahead and put him on the diet. you've already got the +blood result- but your best evidence will be how he feels gluten free