Do I have celiac diease? Preparation and questions for your first doctor’s appointment.

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So, you’ve read my post about finding a doctor and now you are ready to make your first appointment! Congrats, that is the first step in getting answers for whatever has been plaguing you for years. I am not a medical doctor and do not understand the complexities of testing and diagnosis for celiac disease on the back end, so I am not going to post what type of medical tests you should ask for or have done. I will post links at the bottom of the post from other credible websites for you to review.

Here are my suggestions and tips for getting the most out of your initial doctor’s appointment for gluten intolerance and/or celiac disease.

Before making an appointment:

1. Find out if your doctor actually has experience treating and diagnosing celiac disease or other gluten related problems. There is no point in going to see a doctor who doesn’t specialize or isn’t familiar with these issues. You are just wasting time on getting answers.

2. Ask how long you will have for your first appointment. My doctor allows 30 minutes for a first appointment and 15 for follow ups. Don’t waste your time with the doctor chit chatting!

3. Prior to your appointment, write down all of your symptoms and chronicle your medical history. This will be much easier to show your doctor and review than sitting there trying to think of them all and realizing you didn’t bring up important ones after you already left.

4. Get your medical records from your other doctors sent over to the new one. You will need to sign a medical release of information and might have to pay a fee but it will be worth it for the new doctor to have all your information in one spot.

5. Know and chart your family medical history. Again much easier than trying to remember it all in a 30 minute appointment.

6. Write down every single prescription medication, over the counter medication, supplement and vitamin that you take. Include all the doses and schedule for each of them. Even ones you might be embarrassed you take like an over the counter weight loss pill.

7. Write down why you think you have celiac disease or problems with gluten.

8. DO NOT change anything about your diet or lifestyle prior to going to the doctor and having tests done. This is essential for finding out what is really going on. You have to get an accurate picture of your body condition in order to diagnose.

9. Understand there is no pill or medication for celiac disease if you do in fact have the autoimmune disease. The only way to manage it is with a gluten free diet.

10. Don’t panic or come to your own conclusions prior to going to your appointment. Be educated on your history, your body and yourself to provide the doctor with the exact picture of what is going on. This is the BEST way to get an accurate diagnosis of whatever is upsetting your body.

Questions for your doctor at your first appointment:

1. How do you diagnose celiac disease? What blood tests do you run? Do you test for the celiac genes? Will you want me to get a bowel biopsy? This past year I’ve realized doctors have so many different ideas of diagnosis. I’ve heard one speak about biopies being the only way to tell and others say genetic presence with condition improvement upon removing gluten are just as acceptable. It’s important to understand your doctor’s beliefs and thinking on the diagnosis component.

2. How quickly does you lab turn around results and when can you make your next appointment.

3. Do you provide aftercare, follow up blood tests, recommendations for support groups in the area and additional help?

4. If I don’t have celiac disease, what other conditions could I have with the symptoms I’m experiencing?

5. Can you refer me to a registered dietician specializing in celiac disease?

6. How often will I follow up with you after my original test results?

7. If I have nutrient deficiencies, what is you protocol for treatment?

8. What other tests should be run along with the celiac disease testing?

You know I love your feedback – Post below for others to see if you thought of things I missed!!

Websites for celiac medical tests:

 

http://www.csaceliacs.info/diagnosis_of_celiac_disease.jsp

http://www.cureceliacdisease.org/living-with-celiac/guide/diagnosis

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/