Crohn's & Children

Hi. I'm new to the group. My 12 yr old (will be 13 in April) daughter is starting to go through testing for Crohn's disease. She is having severe, extremely painful reoccurring sores inside her mouth that last for 10 days or so. They are large (over 1cm in diameter)shallow and very painful. It affects her appetite when they flare up. I call them canker sores but the doctor said a biopsy will tell him more. She also is being seen by a endocrinologist due to poor weight/ height gain. She is 4'7 and 66 lbs. The doctor said the mouth sores can occur months to year or more before the other Crohn's symptoms occur. Does anyone have experience with their child or themselves starting off with mouth sores before Crohn's diagnosis? Thanks for any input.

Yes, as beave said they can happen on their own or with other conditions. I have had them be my first warning sign before some major crohns flare ups though too.

While they are runnings the tests, have them include a celiac panel as well. Both Crohn’s and celiac disease are autoimmune disorders.

https://www.beyondceliac.org/celiac-disease/symptoms/

I suffered from anemia my whole life. No GI issues. Turns out I had celiac disease. In retrospect, I now know that it damaged my bones (osteoporosis), caused teeth issues, short stature and I was tiny. Never gained weight. Celiac disease is a like a chameleon. Symptoms can wax and wane and patients present differently (like you can be overweight and constipated).

I thought my little niece had Celiac Disease, but a pill camera finally revealed Crohn’s beyond the reach of both scopes (and 4 Ped GIs). She knows that she can develop celiac disease in the future as it is the one Autoimmune Disorder that the genetic components have been identified.

Good luck! Keep up the great work advocating for Her!