Kid W/ Other Gi Problems + Celiac

[wildones]

I just discovered this forum, and am really glad I did. I have 7 yr old triplets, and two of them have celiac (one confirmed, one strongly suspected). My son with the confirmed celiac also has short bowel syndrome, he had 70% of his small intestines, his ileocecal valve and part of his colon removed. The celiac diagnosis is relatively new (@9 months ago). His chronic abdominal pain and nausea are better, but not gone by any means. He has a lot of scar tissue in his abdomen because of so many surgeries. He had his gal bladder removed because of a huge stone in his common bile duct and a really bad case of pancreatitis when he was 4 yrs old.

He had an atypical effect from the celiac-he was chronically constipated. The motility of the gut is what is affected by celiac, as I understand it. It is much less common to be constipated and it is very unusual for a kid with short gut to be constipated.

The nutrition challenges are really big with short gut kids, and the added stress of a celiac diet also has been really challenging for me. All three of my kids had a totally milk protein free diet for 4 yrs. That was challenging, but they didn't know any better . Now my boys have tasted all kinds of gluten containing foods and are having a hard time giving them up.

Does anyone have a child w/ additional nutrition challenges, besides celiac ?