Undiagnosed stomach condition

[borntoadorn44]

My daughter is 22 y.o. with constant stomach problems.  She has eliminated most all foods from her diet that seem to cause her distress.  Dairy, gluten, meat, grains.  When she eats she experiences bloating, pain, and her stool always looks bizarre - almost like leaves and sticks.  She has had to use baby wipes because she cannot just wipe with toilet paper.  She experiences depression, fatigue, mood swings, insomnia and her immune system seems to be compromised because she gets sick very often.  She has tried an antidepressents (Lexapro) but had an immediate allergic reaction and discontinued them (hives).  She went to a pediatric gastroenterologist a few years ago and they did a test.  She followed the instructions (no food or water after midnight) but the formula they made her drink took three times longer to go through her intestines and they kept asking her if she ate something which she didn't.  The test was inconclusive and they told her food moves extremely slow through her intestines and they've never seen that before.  She thinks she may have Crohns or Celiac but the gastro said she didn't.  She is miserable every day and now I live in Texas and she's in Chicago.  Can someone out there please give us an opinion of what she may have and possibly a referral to a gastro in Chicago that will understand her and not tell her she just has IBS because this affects her life so much that she's been suicidal.  If she could just find a doctor that can find out what is wrong and treat her she would get her life back.  She is fully insured.  Thank you.


This discussion is related to Odd stools in my stomach!.

[CalGal]

If your daughter has found that both gluten and dairy cause her problems, it's a good possibility that she IS celiac. One thing she needs to realize is that she may have to be very proactive (read pushy) to be able to get some help on that front because many docs don't understand or know how to really take a close look at celiac.

If she's going to be blood tested for it, a panel needs to be used - not just one parameter. But she also needs to understand that there are many false negatives with this test (and the biopsy is just as notorious for coming up with false negatives). If using the blood test, make sure the following are done (and she's got to have been eating gluten for many weeks before the tests: total IgA, IgA and IgG gliadin, transglutaminase and endomysial antibodies, AND the genetic (allele) test.

If she wants to check for herself, go to enterolab.com and order the celiac panel along with the gene (allele) test. It's a company that has found celiac disease in a number of people when all the 'regular' medical tests have come back negative. It uses a fecal antibody technique that is very accurate. In additon, make sure she also gets tested for cross-reactivity to casein - the major protein in diary. Many celiacs cross-react to casein. Enterolab doesn't take insurance as far as I know, but they're reasonably priced and it very well worth the money.

In some celiacs, food can be slowed down and some experience constipation. Celiac disease doesn't always mean diarrhea.

Some of your other daughter's symptoms (depression, etc) sound very much like what many celiac's complain of.