My son Joshua has TCHD, and yesterday his grandmother was diagnosed with Celiac Disease, after 50 some years of being misdiagnosed! The problem for me is that b/c Joshua only has his small intestine now, his poo is supposed to be “soft formed”. Now, most of the time it is very liquid, so I definitely don’t consider it “soft formed”. Now I ponder, could it just be HD, or could he have CD, which is greatly (according to all the websites I’ve been referencing) under diagnosed and, yes, it is genetic 
Any input would help. Geremy
Before we knew that my Tyler had HD he tested inconclusive for celiac disease. We never did a biospy to confirm but we just treat him as though he does have it.
Janel
mom to: Isabella(13), & Tyler(5) Hirschsprung’s Disease (dx 1/08,pull-thru 5/08, ostomy closure 6/08), cecostomy(11/08)
Funny you should write this as this is the path we are on. after Tristan’s last hospitalization for 30+ bms a day, the GI decided to test him for Celiacs Disease. we are waiting on the results that should be in any month now. since then, my family doctor also suppects that I have it. I am also doing the testing and if need be, I will be doing the biopsy. We have taken lots of glutten products out of his diet and have seen a difference. I am sure we will see a bigger difference once I remove ALL glutten products. If you talk to Dr. he can easily do some blood work that will determine if it is a possibility. I have also just found out that Celiac Disease is 100% heridetary (not sure how to spell that as I am French) so if your son has it, you or your partner most certainly have it. If I were you, I would persue this matter a little farther for more answers
Melanie
Thank you so much for your replies. I think that by putting my son on a gluten free diet in the mean time while we figure out if he has it or not won’t hurt him. Also if his BM’s get better than that will give me more info to point doctors in the right direction for testing him. I really hope your son finds relief in this new diet I can’t imagine 30+bm’s.
Keep up the good work being the best advocate for him and doing all you can.
Love Geremy
Just remember once you go gluten free if you decide to do the biopsy for celiac the results will not be accurate. To get accurate results you have to be consuming gluten. Just something to think about.
I wish we would have done the biopsy then but we didnt and now I will never know unless I put him back on gluten which I am not at all interested in doing.
Janel
mom to: Isabella(13), & Tyler(5) Hirschsprung’s Disease (dx 1/08,pull-thru 5/08, ostomy closure 6/08), cecostomy(11/08)