I am new to this forum and hope to get some helpful advice from all you. My 17 yr.old son(2 weeks shy of 18) has just been diagnosed with celiac and Crohns ileio colitis. We received his diagnosis quickly after a complete GI scope.
The GI doctor appears to be on the ball, having concluded the diagnosis, however, my hesitation is when he told us to look it up at WebMD and ask him any questions. While the diagnosis most likely is correct, I am left wondering if we should find another doctor to review the tests to either exclude or include any further findings. Also, my son is continuing to lose weight( most likely his anemia), while other symptoms have been improving. The doctor didn't suggest a nutritionist, is this a good idea?
My son is only 6 and he was diagnosed as well by an endoscopy......However all of his blood test/markers have been negative for celiac. We have been on the gluten free diet for over a month now and he is no better......he is still having bloody diarehea, losing weight, severe stomach pain. His doctor told me he was "shocked" that his biopsy came back positive for Celiac's and lets try the diet to see how things go. He also said it could be some other things but he didn't want to "overwhelm" me right now. He is up at night with pain and I called and he goes in a few minutes back to the doctor. I am anxious to see what his new blood work shows and the bone scan results. I think he will order more test but who knows? We have a appt in NY at the Celiac Center on Nov. 6 for a second opinion but it will be such an expensive trip I don't see us making it there now. I will probably get him an appt at a big city (closest one is about 2 hours from me.)
I would suggest a 2nd opinion. I've read and read books and internet articles. A positive biopsy is conclusive of Celiacs Disease IF the blood test backs it up and the diet is working. However having a biopsy that suggests Celiacs there are also other causes that can mimic that on the scope. Hope this helps.....