Calling all Celiac Advocates - this just in! We are changing celiac medical care by sharing our stories and expressing our needs! This post includes how doctors learn from celiac advocates, tips for communicating with your doctor, and why you should join the online gluten-free community!
- How Celiac Advocates are changing Medical Care
- How to make a stronger impact as a Celiac Advocate
- 3 Tips to effectively Communicate with your Doctor
How Celiac Advocates are changing Medical Care
When I was diagnosed with Celiac Disease 8 years ago, my doctors offered only: “Follow a gluten-free diet”. Most couldn’t even tell me which grains to avoid (wheat, barley, rye, and sometimes oats).
At my appointment this week, my doctor asked if I was struggling with gluten cross-contact... my jaw dropped. At previous appointments, her knowledge of celiac was limited. When I asked how she knew so much, I was even more surprised by her answer.
Here are 3 ways my doctor improved her understanding of celiac disease:
1. Influence from Celiac Advocates on Social Media
My doctor is on social media as a working professional. She initially followed the hashtags #chronicillness and #autoimmune. When celiac posts appeared with these tags, she took the opportunity to learn more about the patient experience. She now follows #celiacdisease too!
2. Patient Celiac Advocates
Other celiacs like me explain and re-explain our limitations and why we need routine bloodwork to check for nutrient deficiencies. Over time, the stronger our personal advocacy, the more she learned. Every time you advocate for yourself, you amplify the needs of the community!
3. Celiac Bloggers
The wide variety of topics covered by celiac bloggers showed my doctor there was another story - one that wasn’t shared adequately in her medical training. Bloggers advocating for the needs of celiacs and online resources for newly diagnosed celiacs show that there is a lot more to living with celiac disease!
The absolute BEST part about all of this is that there is no small action in advocacy. All you need to do is advocate for yourself and it helps us as a community!
Want to make a stronger impact as a Celiac Advocate?
3 Tips to effectively Communicate with your Doctor
1. Be relentless in advocacy for basic ongoing care
At the very least, Celiacs need routine checks for nutrient deficiencies. You should discuss the frequency with your doctor. For me, I get bloodwork once a year and any time things seem ‘off’ for an extended period of time.
Some people may need their antibody levels or bone density monitored, especially if recently diagnosed with celiac disease.
Having trouble getting your doctor to take these checks seriously? This brings me to my next point...
2. Bring back-up
Many doctors are still ignorant of celiac care. I highly recommend purchasing and bringing this medical book with you to the doctor’s office to back up your claims: Celiac Disease: a Hidden Epidemic
This book, written by a lead medical researcher and doctor at Columbia University, covers everything you and your physician need to know about your diagnosis and ongoing care. It’s a dry read, but the Table of Contents makes for easy navigation.
I highly recommend that EVERY celiac get a copy of this book for the purpose of celiac advocacy with doctors. In my experience, using this book was well-received and gave my needs medical validation.
Tip: Bookmark and highlight sections of concern before your appointment. Be very selective in your highlighting and show great appreciation for doctors who will take this extra time to support you. I like to find the online review sites and write them a glowing review afterward!
3. Support doctors who care
Perhaps the best way to get good celiac medical care is to find a doctor that is knowledgeable already. Ask around on social media, facebook groups, and forums (like celiac.com). I love supporting the medical practices of doctors who are willing to take that extra step!
If you don’t have a doctor familiar with celiac disease, you can be your own advocate. Often, this leads to excellent care!
Any communication with your doctor about celiac disease amplifies the needs of the community, no matter how well the conversation goes. Next time someone comes in with a celiac concern, they will pay more attention after speaking with you!
Do you have a celiac doctor you recommend? Share with us in the comments below!
With love and gratitude,