Should I Get Them Tested?

[Carin3]

Hi-

A little background on me. I have hardly any of the GI symptoms of celiac but most of the non-GI symptoms of celiac. I used to poop like 4 or 5 times a day. They were normal but when I had to go I had to go(my youngest and my son seem to be that way-see below) I was diagnosed with Celiac about 2 months ago. My testing was done a little backwards. I had a endoscopy/colonoscopy done due to chronic anemia (and iron pills weren't helping). After the procedures the doc said everything looked great but when I went in for my follow up two weeks later they said the biopsy showed celiac. The GI doc wasn't convinced and did the celiac blood work and also sent my biopsy to be looked at by a doctor and Yale. Well my blood work came back negative but the doctor at Yale also said Celiac. I have three kids ages 3(girl),4(boy),6(girl). My 4 year old has had stomach problems since 15 months old-we took him to a pediatric GI for poor growth and general fussiness (I just knew something wasn't right). They did a endoscopy and found a large,nasty old stomach ulcer along with chronic esophagitis/reflux. They did do biopsies for celiac and they were negative. About a year later (he was still on ulcer and reflux meds due to complaints) he had another endoscopy that found a duodenol ulcer and duodenitis (while on meds). We continued with meds and got a second opinion. A couple months after that endoscopy they did another one which showed duodenitis. Since this summer he has been doing pretty good but over the last 2 months has started complaining of his belly (but not where you have ulcer pain), chest, and throat and the biggest problem is he is pooping in his underwear all the time (he is 4 1/2). Most of his endoscopies they did biopsy for celiac but I'm not sure about the one a year ago. Does this sound familiar to anyone? Also, my youngest seems to poop 2,3,4 times a day on the potty (she so reminds me of me preGF). How accurate are the blood test of children of this age? Is it worth getting them tested? Whats the chances of one of them having it? My poor son has been through so much all ready and I figured he didnt have it b/c I didn't think his issues were associated wit celiac but then I read some and just don't know. All this is soooo new to me and I am still learning. Any help/thoughts would be appreciated!!Thanks so much and sorry so long!

[Wolicki]

Testing for children is notoriously unreliable. Why not put the whole family on a gluten free trial to see if they have a positive dietary response? It's non invasive, mostly non traumatic (life without Goldfish crackers can be considered traumatic to some kids ) and may make a HUGE difference in their health. Give it a try

[lovegrov]

Actually, I think these kids are old enough to at least do the blood test. Celiac experts recommend that ALL first-degree relatives be tested.

Trying the gluten-free diet with your kids isn't a bad idea, either, but if they don't need to be on it, I wouldn't put my child through it.

richard

[nmlove]

I agree with Richard. If the test is positive, great (well, not great but at least you know). If negative you can still do the diet to see if it affects them. My kids' pediatric GI doc told us blood test, then biopsy (we didn't have to biopsy my 2nd). If both were negative (they weren't), they'd do genetic testing to rule celiac out. Regardless of the genetic results, they would have had to go gluten-free anyway because something was making their blood test positive.

By the way, my oldest was a big pooper - from birth on. Prior to diagnosis, however, there was a change in the type of poop but frequency was still high - maybe a tad higher when he was sick - just like he was as a baby on breastmilk alone. So there's a chance that's normal for your daughter. Testing is a personal decision but for me it is nice having the diagnosis because my sons are small. It's easy to control everything right now but as they get older, it will be less so. If they didn't have to be gluten-free, then as a parent you wouldn't worry about them going over to a friend's house or out to eat or a trip to Grandma's. I have a hard time just with play dates sometimes! Plus, I don't know about you but I sure am not that old that I don't remember what it felt like to think that I'd never get old, get sick, etc. There's a chance you'll deal with some food rebellion (maybe, maybe not) but I think it far less likely to be an issue if there's no wishy-washiness about it. Anyway, just my two cents.