Severe digestive problems in 15 year old Daughter

[julie1214]

Does anyone know of any disease or illness in the digestive track that can't be diagnosed with an upper GI?

My 15 year old daughter has been struggling with digestive problems for 3.5 years now.  She has had an upper GI, ultra sound, ct scan, and blood work done, all have been negative.  She gets flare-ups and can go several months between episodes.  When she gets a flare up the pain feels like knives in her lower abdomin.  Her stomach gets very distended, she gets very gassy, she gets sweaty and shaky.  She also get partial blockages and alternates between constipation and diareah.   She has vomitted and passed out in the past.   These flare-ups can last several weeks or just a couple of days.  She does lose weight during the flare-ups and can't eat much.

She has never had lower GI or colonoscopy.  Her GI Dr. feels it is all stress related.  As her mom I truley feel she is only stressed when she feels so rotten.  In between episodes she is very happy go lucky.   She is small for her age and has not started her monthly cycle yet at 15.5 years old.  Does anyone know of anything that would fit these symptoms?

[TrudieC]

You should also ask them to check to see if she is getting ovarian cysts.  They can get big and push on the GI tract causing constipation and diarrhea.  It could be the reason she hasn't started her menses.  They may be coming, growing and causing the bloating, and then rupturing when she has all the pain.

[tandk]

I would suggest your daughter having a lower GI and colonscopy.  I was an 11 year old when I first got sick with similar symptoms like your daughter.  It took my mother's persistence and many doctors, to have me diagnosed with Crohn's disease.  I missed a lot of school and was in a lot of pain during that period.  I was very small and lost a lot of weight and also did not have my monthly cycle until I reached age 18.   She should also be checked for ulcerative colitis and celiac disease as I would think they may be possibilities also.  

Be persistent and get another opinion and definitely have a lower GI and colonscopy.  You know you daughter better than anyone.  Good Luck!

[PrincessKatie]

I would definitely recommend finding a doctor who will do a colonoscopy. I'm surprised they didn't do a double endoscopy in the first place. Both Crohn's Disease and Ulcerative Colitis (UC) would show up in a colonoscopy. Crohn's can show up in an upper GI, but many people only have Crohn's in the lower portion. UC would only be seen in a colonoscopy because it does not go above the large intestine. Your doctor could argue that the ct scan would have shown something, but that is definitely not enough to rule out the need for the lower GI. My colonoscopies always show things that scans don't.

As well, I would strongly recommend checking to see if her blood work included a Celiac Sprue panel. It tests for Celiac Disease and while they should have seen it in the small intestine during the upper GI, I've heard of people having the disease without conclusive biopsies. The fortunate thing about Celiac is that it is almost always exclusively controlled by a gluten-free diet and requires no medication. The above diseases are often not the case.

I was diagnosed with Celiac and Crohn's from a double endoscopy when I was 17. I had suffered for two years before the diagnosis and missed almost the last 9 months of school. I really hope you figure this out soon!