Celiac Or No?

[kaykamtrav]

I have a 15 year old daughter that has ranging symptoms of constipation to diareahha ona daily basis.   This all started about 2 years ago when she developed a strange throat infection that would only clear up with the Bactrum antibiotic. Over the course of three months the infection returned 3 times never testing positive for strep but the worst infection I have ever seen.  The pediatrician sent us to an infectious disease Dr. for evaluation, he proceeded with more bloodwork that only showed inflamation and then proceeded with more bloodwork that showed positive for Lymes disease, he then treated with zithromax 4 packs one week on one off for 2 months. She was retested and was negitive so no follow up required.  Shortly after she developed a separation anxiety with me, she couldnt go to school and in a few short months couldnt leave the house, she developed very munipulative behavior constant lying and rages.  Within a few weeks she also developed these issues with her stomach.  She started seeing a psychiatrist who diagnosed her with panic disorder and Adhd, she perscribed her with lexapro and xanex and with these meds her behavior is a lot more under control, she was diagnosed with IBS.  Her panic attacks have subsided except for when her stomach hurts which is several times a day. Also a few months ago she came down with shingles, which is strange for a girl of 14 who never had chicken pox. She has also had problems with swollen lymph nodes in the neck that had to be treated with steroids.  She told us that while on the steroids was the only time she has felt relief from the stomach pains. She has had abdominal cat scans and ultrasounds only showing extreme amounts of gas.  Her symptoms definately get worse around her cycle.  As per her psychiatrists advice we started seeing the gastro Dr again that diagnosed her with IBS.  This time he suggested repeating the tests she had done a year ago, Again the celiac and chrones tests came back negative stool showed nothing but billiruben was elevated and potassium was low.  She has also lost 35 lbs over the course of a year averaging 2-3 lbs a month.  She is scheduled for a colonoscopy and endoscopy in a few weeks but I really feel that it is celiac and I was wondering if anyone has expierenced anything like this...Thank You for your help!!

[kareng]

You might want to look into more info about Lyme disease. It may not be completely treated? I know several people who have had it and had to seek a bit more treatment than an average doctor would give.

[cyclinglady]

Exactly which celiac tests were taken? Did you get copies of all her lab test and their results? Often doctors run a cheaper screening panel. In my case, if my doc had not run the full panel, my diagnosis would have been missed.

If she goes forward with the endoscopy, be sure to get up to six biopies. The intestinal tract is vast and it is easy to miss damged areas which are not always visible to the doctor. Ask how steroids may negate a celiac blood panel. I can not tell from your posting when she was tested and when she was on steroids and or other meds.

Here is more information from Mass General regarding testing:

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Of course it could be something other than celiac disease too, like Karen said.

I wish you well!