So many celiac diagnoses are initiated by the patient, and not the physician. After all, there are still a vast number of physicians out there (especially the ones who went to medical school decades ago) who are frighteningly ignorant of celiac disease.
Why is this the case? Recent research helps shed some light.
The Celiac Disease Center at the Beth Israel Deaconess Medical Center (BIDMC) in Boston is one of the best of its kind. A lot of you have probably heard their name recently as they have been (very) actively recruiting adults with celiac disease for a survey on celiac symptoms.
While the data from that survey isn’t available yet, they did just publish the results of some other research they’ve been working on.
BIDMC researchers compared data from roughly 800 celiac patients and found that there was a direct correlation between celiac diagnosis and per capita income.
The study concludes that access to healthcare might not be the issue; rather, access to health information and resources may be.
As we now know, celiac is far more prevalent than was originally thought. Approximately 1 in every 133 Americans has celiac disease but only 1 in 4000 is diagnosed.
As can be seen by the study done at BIDMC, access to health information is a critical factor for whether someone with celiac disease is properly diagnosed or not.
As you look back on your own diagnosis story, many of you probably had to do a lot of your own research and internet digging to “help” your doctor reach his or her conclusion.
Your diligence and self-education may have led to your own diagnosis, but it certainly should not end there.
Celiac Diagnosis: The Beginning of Your Education, Not the End
A celiac diagnosis should be just the beginning of your journey to understand your disease, your symptoms and your nutrition. If you are serious about your health, it is not enough to simply do your best to follow a gluten free diet and leave the rest to chance.
As you strive to educate yourself on celiac, here are a couple of my favorite resources for educating myself and giving myself the information I need to live a healthier life.
- Journal of Gluten Sensitivity – This is the closest thing that our community has to its own medical journal. Published by Celiac.com, this quarterly publication is always packed with information on the latest research on celiac disease and gluten intolerance. For example, the latest issue (Summer 2011) has an article written by our own Brian Dean on the strong correlation between celiac disease and heart disease, and what you can do to improve your cardiovascular health.
- Living Without – This bi-monthly magazine is the most widely read of the major gluten free magazines. Like the Journal of Gluten Sensitivity, it has great scientific information, but it also has popular recipes, information on the gluten free industry, and other tips and advice on “living without” gluten. In the latest issue (August/September 2011) there is a spectacular article on osteoporosis and celiac disease. This information is so critical since up to 70% of celiacs have bone density issues!
Of course, these are just a start, but there’s no reason to be overwhelmed from the get-go. These two resources will give you two different perspectives, as the journal will give you some foresight and information on the medical side of things, and Living Without will for the most part be packed with recipes, trends, and developments in terms of following a gluten free diet. Beyond these, there are tons of blogs, print and online publications, and medical commentary you can find on your own.
Lastly, we hope that the CeliAct Blog provides you – our readers – with nuggets of information you can use to help you with your celiac disease and gluten free diet.
Do you have any topics you’d like to see us research and write about? Write us at firstname.lastname@example.org and let us know. We’ll do our best to get you the information you want!