I was diagnosed with celiac disease in December 2005, over winter break of my senior year of college. My diagnosis was somewhat happen chance. Sure, I was extremely sick, but in totally non-traditional celiac diagnosis type of ways. I'll spare you the exact details. My home doctor laughed at the suggestion that I should be tested for it, but the physician at student health services who had no other idea what was going on, figured it was worth tacking on to the lab work. I came back positive to all 4 antibodies. I was then shuffled off to see a GI doc who confirmed my diagnosis and sent me on my merry [gluten free] way.
Working on the healthcare team at a diabetes camp, I had learned a lot about celiac disease in the summers prior to diagnosis. I knew I was at a high risk due to my strong family history of autoimmune diseases and my personal history of type 1 diabetes. I had suspected that it might be the culprit to my gradual onset of chronic woes and I was the one who suggested the test to the student health doc. I had done my research and was prepared for the results when I came back positive. I wont deny that going gluten free sucked, but emotionally, I rebounded to the news pretty quickly and I was soooooo ready to start feeling better.
When I was diagnosed, it was suggested that my immediate family members get tested. None of them did. Today, 5 1/2 years later, my mom saw a new osteoporosis specialist who screens for anti-gliadin antibodies as part of his comprehensive panel. Turns out that she has celiac disease too. She's 66 years old and totally asymptomatic. Antibodies don't lie. Okay, so sometimes antibodies are confused, but in her case it is a true positive diagnosis.
Watching her come to terms with the reality that she now needs to drastically change her diet is difficult. While she is willing to, she lacks the physical motivation of illness that I had. I imagine that it is also much harder to change your habits at 66 than it was at 21.
To my dismay, my endocrinologist does not screen all of his type 1 diabetic patients for celiac. So every time I have seen him since my diagnosis, I have brought in scholarly literature about the need to annually screen patients with related autoimmune disorders. He argues that it will make a difference in seemingly asymptomatic patients; that they will be unwilling to change their diets for a disease that is not causing acute distress. In lieu of today's events I both understand not wanting to turn someone's life upside down and also the need screen for conditions the patient is at high risk for. Had this doctor not screened, my mom would get to continue to naively live her life the way that she's accustomed, and at 66, who knows if untreated celiac would have left her with any serious term sequela. At the same time, I believe that it is out obligation as physicians/future physicians to supply our patients with all of the information regarding their health despite our personal belief about what they'll do with the knowledge. Example: we need to educate our hypertensive patients on smoking cessation and dietary changes, and the impact not making these changes might have, even if we know that they're going to simply walk out the door with a cigarette still in hand.
Am I just being naive though? Is my endocrinologist right in that we shouldn't screen for problems that aren't yet screaming to be found? Would my mom be better off not knowing that she has celiac disease?