Posted on April 17, 2012 10 Comments
I *might* have celiac disease.
I am definitely sensitive to gluten.
The treatment for both of these conditions is a gluten-free diet. The diagnosis for celiac requires a specialist visit and an endoscopy, an invasive procedure that requires anesthesia. My physician says that based on my family history, she doesn’t need a celiac disease diagnosis to tell me to go gluten free, I just should do it. However, she said if I need to know whether I am celiac or not, I could see a specialist. But the end result would not be different; I would need to avoid gluten either way.
What a pickle.
After years of digestive testing that started in high school, it’s come to this. How much do I want to know? How much do I need to know? What will a diagnosis do for me that a probable cause will not?
I go back and forth. The reason for my current dilemma is this: in November a blood test for celiac came back negative. In February I went gluten-free for nearly 30 days, with positive results. In March, I added gluten back in, with very negative results. I took another blood test yesterday, but since the first came back negative and the tests are notoriously fickle, I don’t expect to learn much from it. Celiacs will tell you a diagnosis with endoscopy is necessary, pursue it. Non-celiacs say to leave it at gluten-sensitive and move on. The question is, can I?
After years of visits to different GI docs and primary care visits for various pains in the abdomen, and a supremely unsatisfying “irritable bowel syndrome” diagnosis several years ago (which is basically the equivalent of a shoulder shrug and a pat on the back), plus many other seemingly unrelated irritations like migraines and ovarian cysts, I would like to know.
I would like to know for sure whether this is “all in my head” or if something truly is happening. I would like to know if I can have a beer and a pizza every once in a while and risk only a headache and some discomfort, vs. risking intestinal damage. I would like to know.
If one physician tells you that he or she need doesn’t a confirmed diagnosis to start the treatment, why pursue the diagnosis? Why go under anesthesia, at a cost of (I believe) about $1,000 plus the specialist visit?
Objectively, I tell myself that it makes more sense to just consider gluten off-limits for the most part and proceed with life. The end result will be the same. Plus, working in academic medicine, I believe that in five or 10 years there will likely be another, better, less invasive test that is cheaper and more accurate.
My mind has questions. It wants confirmation, validation, something.
I know that as a patient, I am my own best advocate. But then I go back to the doctor’s question: “How will the endoscopy make anything different for you? If it comes back negative, won’t you still go gluten free?” Yes, I will. The end result will be the same. It’s a good question to ask, and is probably along the advice that many doctors would give, especially as physicians are criticized in the media for ordering unnecessary tests, spending too much money, and driving up the costs of health care.
To her credit, she left the discussion somewhat open ended, “It just depends on whether or not you need to know. I would need to know. But everyone is different. It’s up to you. The results will be the same.”
I have the number for a specialist. I’m not sure whether I will use it.
What a pickle.