AS the head of Beyond Celiac, a leading global celiac disease patient advocacy and research organization, for the past 15 years, I have learned a lot about disease burden.
Those who have faced the difficult path to diagnosis know that celiac disease is a serious, currently incurable autoimmune disease that affects much of the daily lives of those who develop it.
One of the most difficult aspects of this disease is the long road to diagnosis itself. I experienced the challenge of getting an accurate diagnosis firsthand. My journey included seeing 22 doctors, all while dealing with debilitating symptoms and heart-wrenching experiences, including a full term stillbirth and multiple miscarriages.
Unfortunately, my story is not unique, and it was this difficult path that was one of the catalysts for starting Beyond Celiac. Our organization has helped to increase the diagnosis rate and shorten the time it takes for many to become diagnosed.
However, studies suggest the magnitude of the issue remains huge, and estimate that 83 percent of those with celiac disease remain undiagnosed or misdiagnosed.
In the Journal of the American Medical Association, Dr. Daniel Leffler highlighted one such case study. Officially diagnosed at age 46, “Ms. J” had become anemic 20 years prior and experienced three miscarriages. In a study from Canada, diagnosis in children with celiac disease was commonly delayed, with some cases taking 15 years to be diagnosed.
Anecdotal evidence also abounds. A Beyond Celiac Facebook member was told she may have colon cancer only to find out she had celiac disease, despite her doctor previously assuring her it couldn’t be that.
The son of another member of our online community ended up in the emergency room after being initially misdiagnosed and given a strong antibiotic. Another woman’s gallbladder was removed when celiac disease was actually the cause of her debilitating symptoms.
Recently, our organization launched Go Beyond Celiac, an online community where those with celiac disease can help to advance research through their stories. We’ve already learned a lot of interesting things from survey participants, including that 55.6 percent of respondents had at least three years between the time symptoms first appeared and a celiac disease diagnosis, and that one-quarter saw four or more doctors before getting a proper diagnosis.
What’s more, 65 percent of Go Beyond Celiac participants were called a hypochondriac by a relative, spouse and/or friend prior to diagnosis.
The journey to a celiac disease diagnosis can feel isolating and can affect your relationships, your mental health and your trust in physicians. You’re looked upon as faking symptoms or even crazy by some.
Health-care providers may not believe you or brush off your concerns. Some members of the community are advised to go gluten-free before they receive a diagnosis, only to find out later this makes testing inaccurate. Those individuals face the dilemma of undertaking a likely painful “gluten challenge” or of living without knowing if they truly have the disease.
However, for anyone in the midst of seeking a diagnosis, take heart. Finding out if you have celiac disease can start you moving toward better health, and you will end a wonderful, supportive community to help you adapt.
Here are valuable tips to help speed along your own journey to diagnosis:
Fill out our Symptoms checklist’: Bring it with you to your appointment, preferably with a health-care provider who has some background in celiac disease. (Visit Amino.com to find the options closest to you).
Do your research: Learn as much as you can. Come armed with information to doctor appointments.
Ask your doctor about genetic testing: A negative test can help rule out celiac disease before further testing.
Get your medical records: And learn how to read them.
Ask a lot of questions: Write them down so that you don’t forget.
Don’t go gluten-free until diagnosis: This will make testing inaccurate and the path to accurate diagnosis more difficult.
Self-advocacy is important: Learn as much as you can beforehand, don’t be deterred by those who try to brush off your symptoms, keep fighting for yourself until you receive an accurate diagnosis, whatever your ailment may be.
Encourage family members to test: Celiac disease is a disease with a genetic predisposition, which means blood relatives are at an increased risk.
We are a strong, powerful community that together can help to reduce the time to diagnosis through sharing our stories, participating in research and spreading the word about the seriousness of celiac disease. Join Go.BeyondCeliac.org, add your story and help build a future beyond celiac.
Alice Bast is CEO of Beyond Celiac, the national organization working on behalf of the celiac patient community. Visit BeyondCeliac.org to learn more.
Read more articles by Alice Bast:
When Grandparents Don’t Get Gluten-Free: 4 Steps to Educating About Celiac Disease
Celiac Disease Research: Asking the Right Questions
Keeping Your Costs in Line on a Gluten-Free Diet