MG Mom,
Your daughter had a colonoscopy; has she also had an endoscopy? We're talkin' two different points of entry here! A colonoscopy won't be able to diagnose Celiac, I don't believe. Gluten primarily affects the small intestine, and that is where the damage occurs.

If it has been over a year since she had an endoscopy (if she has had one), you may want to request another one. Our daughter has Down syndrome, so one of the screens that they do when they are 3 years old is a Celiac screen (people with DS have a 1-in-8 chance of developing CD). When she was 3, her test was negative. When she was 7, her CD numbers were literally off the charts, yet she was asymptomatic.

Most doctors will only screen once for CD - they don't realize that gluten's effects are cumulative, and that one negative test DOESN'T mean that a person can't develop CD later on down the line. They also used to think that kids with CD would "grow out" of it after being on a GF diet for a while, not realizing that CD is a chronic condition that has to be treated by avoiding gluten for life.

I would think, as many problems as your kids are having - and given the fact that they both have an autoimmune disorder already - you might want to request that they be tested for CD again, if it has been a while since their last screening. Incidentally, our daughter's CD numbers were back to within normal range within a year of being on a GF diet (which is true for most people within 1-2 years if they keep to a strict GF diet).

As I said before, a "standard" endoscopy can only reach so far - it won't catch the entire small intestine. And even then, depending on where the biopsy samples are taken along the intestinal tract, they still might not get a sample that has blunted villi.

There are several good Celiac forums out there - I am sure that on one of them you would be able to find several people who "flunked" all of the Celiac tests/screens, yet who still found relief on a gluten-free diet. My husband tested negative for CD, but all of his GI problems went away after he started following a GF diet - and when he accidentally eats something with even a small bit of gluten in it, watch out!

I am not the only person who felt like I had found a "miracle" when I quit eating gluten. The Celiac boards are filled with people - many of whom had been suffering for literally YEARS before finally being diagnosed with CD - who thought the same thing after just a couple of days. To think that something as simple as removing one tiny ingredient from one's diet would make such a HUGE difference in a person's quality of life is, quite simply, amazing.

And as I said before, many MORE people are believed to be gluten sensitive who will NEVER test positive for CD. The only way to know is to try a completely GF diet for a month or two. But, believe me, if gluten is the culprit, your kids will be able to tell the difference LOOOONG before a month is up!