i am no doctor, but my10 year old has crohn's disease, and i have done a lot of reading on the subject. has this been looked into?

Not yet, but I am aware of Chron's as a possibility and am beginning the 2nd opinion process this week so it will certainly come up. Thanks for the response.

That could be her only sign. The problem with CD is the symptoms vary from person to person. My older son has gluten intolerance and he had a protruberent belly, 10-12 very large, explosive diarrhea diapers a day, and eczema, but he was growing fine. CD and crohn's disease get mixed up all the time. You'll know for sure if you completely take her off gluten and she improves.

Heather, I will certainly check on Crohns. We start with the new GI doc on December 11. He has read and understood her pathology reports. He said that there is a certain indicator, a marker, something I believe that starts with an E, that he would expect to see, but that was missing that is highly associated with Celiac. Doesn't mean she doesn't have it, but it does mean that genetic testing and other blood panels are on the way. I will keep you all posted. Thanks for the thoughts. And bless you all in your journeys with your precious babies, too.

In response to Heather's comment: If you are trying to diagnose celiac disease, do not remove gluten from the diet before testing. Even 3 days is enough time for the intestines to heal, giving false negative results on biopsy test. My daughter was just over 2 when she was diagnosed a year and a half ago. We knew for about 4 days (between receiving postive blood antibody test and getting the biopsy) that celiac was most likely her condition, but needed to wait for the endoscope/biopsy the following week, continuing to feed her gluten. A terrible feeling, to be giving your child what is making them sick, but we needed to have a sure diagnosis.

This is true Sarah, but all a biopsy can do is rule Celiac disease IN, it cannot rule it out. The results of a biopsy depend on a couple of factors - enough damage being done, and them biopsying (is that a word? lol) the right spot. So it's very possible to be gluten intolerant and have a negative biopsy. Oftentimes patients have to be very, very sick before intestinal damage will show up.

In my opinion (and it's just that), if you're going to do the biopsy, then yes, keep your kiddo on glutens until it's done. Children's intestines do heal very quickly, whereas adults take much longer. So as Sarah said, even 3 days could be enough to change the results. I understand the need to have something "on paper" - I needed that too. But really, if you try the GF diet and see improvements, that's the only answer you need really. Also I don't know if you know this, but there's a lab www.enterolabs.com that can do genetic testing for Celiac Disease and stool testing, headed by Dr. Kenneth Fine, who is considered to be the leading CD expert. That's where I had my older son tested (and you don't need to keep your baby on glutens to have the test done either).

I forgot to add, from what I understand, it's pretty rare for small kids to have the classic intestinal villi flattening found in CD, unless they're VERY sick - failure to thrive, etc.

Yes, our daughter was VERY sick, 2 months of recurring vomitting, marked weight loss, lethargy & lots of crying. Her antibody levels were high, and we were referred to a specialist for the endoscope/biopsy, which they said was the "gold-standard" for diagnosis.

Eeesh I'm sorry to hear that. :( Yep, the biopsy is considered the "gold standard" by GI docs. But - even GI docs will admit this, it isn't fool-proof (what is, right?). My son's GI doc was the one who told me that it will depend on them getting the right spot and enough damage being done. Many, many people have been misdiagnosed because CD/Crohn's/IBS are easily confused for each other. Oftentimes the way gluten affects someone isn't intestinal, but neurological. CD has been connected to osteoporosis, diabetes, and even MS - some of those people NEVER had intestinal problems. Docs here in the US are really just learning about CD and unfortunately, aren't as knowledgeable about it as they need to be. That's NOT an insult to your or anybody else's doctor. I think intestinal problems are really tough to figure out - even for doctors.

Also, my son didn't present as the "classic" celiac - his height is currently off the chart (always has been) and his weight has never been less than 50th percentile. Eventually I was getting asked "he looks healthy, what are you worried about?" Well, having diarrhea 10 times a day, EVERY day isn't normal! His gluten intolerance was diagnosed by the lab I referenced before, and when I eliminated glutens from his diet - the change in him was unmistakable and HUGE. His eczema has completely gone away, his diarrhea was gone within a couple of days...one day out of the blue he said to me "mommy, my tummy doesn't hurt anymore." He used to have a tummyache all the time and I didn't know because he was too little to tell me!

It was AMAZING the immediate change removing gluten from the diet made. In just a few days, she was showing very obvious improvement. I am continually amazed at how many different symptoms/affects celiac can have, as I hear about other people's journey with celiac.

I know, isn't it crazy?! Once we all cut glutens out of our diets, we were able to connect the dots. My symptoms were hypoglycemia aggravation, fluid retention and weight gain. My husband had gastric reflux and fluid retention. Our oldest son had diarrhea/vomiting. I've read there's a definite connection betwee CD, diabetes, MS, osteoporosis, seizure disorders - just to name a few! To me that definitely proves just how toxic this is.

My daughter has Crohns and is a celiac, one aggravates the other! Any gluten flares up her Crohns and the associated arthritis. She has always been big for her age and has shown no failure to thrive but the difference in her behaviour and general well being since going GF has been miraculous.
Any Crohns flare up also requires us to drop dairy and high fibre foods for a while.

Yeah it's VERY common for people with gluten intolerance/celiac disease to also have problems with dairy - which makes sense really. Celiac causes "leaky gut syndrome" and milk proteins are very large proteins and highly allergenic.

I'm of the very firm conviction that just about everybody would do well to go gluten free - it's nasty stuff.