Four years ago, my son came down with what I thought was a virus that resulted in a 6 lb weight loss over only two weeks time. Because of the urgency of the situation, I wasn't willing to wait for the test results to come back before taking action and quickly reacted on our pediatrician's suspicion that my 4 year old son was suffering from Celiac Disease by immediately initiating a gluten free diet. The results were immediate and dramatic, and not only for those symptoms he was suffering at the time, but for the many gastrointestinal and neurological symptoms he suffered from since birth. The blood test results came back negative, however, by that point no doctor could convince me to resume a gluten free diet despite what any test results said. I even refused to challenge him for his follow-up endoscopy 3 months later, so of course the test did not confirm Celiac Disease. However, by that time I did not care, because my son was finally healthy, happy, rash-free, and growing at a rapid pace for the first time in his life.
It is four years later and my son is now 8 years old, and for reasons too lengthy to explain here, we thought it might be important at this stage in his life to confirm a diagnoses. I brought my son to the Celiac Research Center in Baltimore, where they conducted genetic testing which came back negative. Believing that was conclusive that my son only had a gluten intolerance rather than full-blown Celiac, I initiated a 3 day gluten challenge before his appointment so the doctor could evaluate his symptoms first-hand and discuss other diseases he could have that respond favorably to a gluten free diet. This turned out to be a very bad decision on my part, as he developed a fever, eczema, diarrhea, ataxia, and joint pain after only two slices of pizza over two days. The doctor immediately confirmed gluten intolerance based on a physical examination alone, and stated that son might either have Crohn's Disease (which does respond favorably to a gluten free diet) or be one of only a very few who has a form of Celiac that isn't linked to a genetic factor. In any case, the gastro specialist recommended doing a 3 month gluten challenge followed by a colonoscopy (to evaluate for Crohns) and another endoscopy (to conclusively rule out Celiac once and for all).
My pediatrician strongly disagrees with this recommendation, believing if it is Crohns it will appear on its own someday without the aid of gluten, and that first and foremost our goal should be to keep him in remission as long as possible, especially because he is still underweight and small for his age.
My son's gluten intolerance is obviously much more severe than the norm, so I'm really at a loss which way I should go with this. Is the diagnoses really that important?
I welcome any and all opinions about the matter. MUCH THANKS!