This is for those people who have gotten positive blood tests for celiac disease from their primary doctor and are being referred to a gastroenterologist for further evaluation of celiac disease. Or even for those who have had celiac for a long time, but feel like it is time to get some things rechecked.
Often times, we simply are referred to a new doctor or we find someone online. With this long term, chronic autoimmune disease, you need to find a partner to help you through this disease. Some of us see our gastroenterologists every year for follow up and blood testing to ensure our vitamins, minerals, and celiac are all under control. Some need to confirm the blood test results with an endoscopy. Some are just reintroducing themselves to a doctor they’ve not seen in years because everything was going along just fine.
All doctors are not the same. We need to find someone that will be a partner, but not a pushover. You need someone that will listen to you and help you on this journey. Most of us have ongoing symptoms or issues and the doctor needs to be able to help decide if this is celiac or something else.
So, here are my list of questions for a new gastroenterologist regarding celiac:
- I have a positive blood test. How do you handle moving forward if my endoscopy is negative?
- How much research have you done regarding diagnostic procedures and follow up care for those with celiac?
- What can you offer if my symptoms persist?
- Are you aware of the current state of clinical trials?
- Are you able to diagnose Refractory Celiac or would you refer me out to a celiac center for diagnosis?
This is a short list and I’m sure you all could think of many, many more questions.
I think we need to see our relationship with the gastroenterologist as a partnership. So, I hope you interview any new doctor and advocate for yourself.