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 My 22 year old daughter was diagnosed with celiac at age 14. Since that time she has rigidly adhered to a gluten free diet (as evidenced by yearly tTGAs that are within normal limits) and multiple EGDs that show her villi have recovered. Yet she continues to have persistant diarrhea and abdominal pain-she describes the pain as right sided just under her breast.  

She has undergone extensive gallbladder testing which showed no gallbladder disfunction, stool studies have been normal, and she doesn't have an appendix. Her last EGD and colonoscopy were 3 months ago and all tests cane back normal except for some mild gastritritis. She is not malabsorbing based on all the blood tests her GI has done. At her last appointment she was basically in tears, telling him the pain is severe and is impacting her ability to function, and all he could come up with was that possibly it's muscular pain from her "guarding" her abdominal muscles. She also is hypothyroid and we've had a hard time getting her Synthroid levels where they  need to be (the GI also tried to blame her abdominal pain on her thyroid levels-I've been a nurse for 25 years and have never heard of low or high tyroid hormone causing debilitating abdominal pain)

Obviously we are not happy with this and she has grown quite depressed. I forgot to add that she had 3 separate laparoscopic procedures last year to remove abdominal and pelvic adhesions from her ruptured appendix which occurred prior to the celiac diagnosis, and this helped her pain temporarily but now the pain is in a different spot.  The surgeon who did the third procedure was very rude and basically accused her of malingering. No 22 year old girl spends her life laying on the couch at her parents house (she moved back home last year after she missed so much work due to the surgeries) by choice, she is truly miserable. She has also lost approxamitely 30 pounds throughtout this

Any suggestions? I've been reading up on refractory sprue and collagenous sprue, and I'm also wondering about some other food sensitivities?  Any suggestions on providers who might be able to test her for other issues?  We are ready to try ANYTHING...I am about an hour from Atlanta so we can travel to see the right doctor or dietician. Any and all help is greatly appreciated...

Shannon (desperate Mom of Jasmin)
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