PLEASE Help!

PLEASE READ WHOLE THING : My 13 year old daughter has been experiencing headaches for two years now. She has tried all over the counter and prescribed medication, but still no relief. She has also been experiencing stomach pain in her upper right and left abdomen. Sometimes she compains of sharp stabbing pain in her lower right abdomen. The pain in her stomach doubles her over. Much of the time, she is nauseated. She has complained of dizziness and joint pain as well. She has had three fevers for no reason, and one after the colonoscopy(99.1). We have been to doctor after doctor, but it seems there is no answer. We are seeing a gastroenterologist currently, and she is running tests. We have seen a neurologist, rheumatologist, pediatrician, and two cardiologists.  She is also seeing an autonomic specialist/neurologist right now that did some blood work, and it came back her Co- Q10 was low, and her vitamin D was low. She is on supplements and nadolol(to relieve headache) currently. She has had a colonoscopy, which she just had done two weeks ago. They found a sore in her stomach, and that came back that she was lactose intolerant. We have known that for quite some time. She has been on a lactose free diet for over six months, and it has not helped her stomach.She was admitted into the hospital for observation because we were checking her blood pressure when she was feeling really bad, and it was 63/47. They wanted to make sure she would be okay for anesthesia. It was a wrist cuff, so the doctor told us to get a small arm cuff. It has been running fine, but not all of the time is it low. At one time it was 91/ 48. She has had an MRI, Exercise test(almost passed out, was removed from treadmill before anything happened), tons of bloodwork, the colonoscopy, and so many others. I just want her to feel better.

[person146]

This sounds like me when I was 13 & in the process of being diagnosed with Celiac Disease. Ask for a FULL antibody panel. Celiac Disease is tragically misunderstood by physicians & they often test for the wrong antibodies. This was my case and I was being seen at a highly renowned medical clinic. Since she's had a colonoscopy, they may dismiss the possibility of Celiac Disease. First, CD is diagnosed via an antibody test + an endoscopy where they take biopsies of her small intestine.

These are the antibodies they need to test for:
    *  Endomysial antibody (EMA-IgA)
    * Tissue transglutaminase antibody (tTG - IgA/IgG)
    * Anti-gliadin antibody (AGA-IgG, AGA-IgA)
    * Total serum IgA
Please bear in mind that the biopsy (especially in children) is highly inaccurate. Although you will never receive a false positive, false negatives occur in nearly 2/3 of celiac patients. The issue is, sometimes there isn't adequate damage to the small intestine so the biopsy results return as "inconclusive." Another problem revolves around the fact physicians often times do not take enough biopsies. Celiac is frequently "patchy" so damaged villi are missed if an area with healthy villi is biopsied. It's a tricky diagnosis.

Also, lactose intolerance, stomach pain, and vitamin D deficiency are classic signs of Celaic. This is a very useful site: http://www.csaceliacs.org/celiac_symptoms.php

I hope you find an answer...