Celiac Disease is an autoimmune disease (genetic) that affects upwards of 1 in 100 people in the United States and worldwide (Center for Celiac Research). It is the most common autoimmune disease in the world, and yet the general American public is much more familiar with autoimmune Thyroid diseases and Type 1 Diabetes. Poor diagnosis and follow-through, lack of awareness/education and our culture have all contributed to a serious misunderstanding of this disease. While passionate people with Celiac Disease, non-profit organizations and some dedicated medical professionals are working to turn this tide - there still remains a great deal of misinformation out there that is perpetuating proper diagnosis, care and treatment of this disease.
Celiac Disease is unique in that is the only (known) food regulated autoimmune disease, and since food is not only a basic essential for each human life but is also an important part of our culture and social interactions, the lines between personal beliefs/experiences and medical information are often blurred - making it difficult for people to decipher fact from fiction when living gluten-free. Being a food regulated disease, the pharmaceutical industry - which plays a major role in educating medical professionals, developing diagnostic tools and creating treatments for diseases - does not have any real need, yet, to include Celiac Disease in the research it funds, initial and continuing education for physicians, etc. Lastly, the food system in the United States is one of the largest, streamlined, and commercially influenced in the world, which has lead to many great things, but has also contributed to a whole population of people completely 'removed' from and uneducated about their food. All of these factors make it difficult to live a simple and healthy gluten-free lifestyle (if you're living with Celiac Disease you know what I mean!) or even find out if you need to be living gluten-free in the first place!
My top 6 must-do's and must-know's for diagnosing Celiac Disease:
1. First and foremost, you MUST-DO your research and find a physician (or group) that is familiar with Celiac Disease and gluten-related issues. Unfortunately many physicians are not up-to-date so take the time to find the best doctor's - it will save you a lot of pain (literally) in the long-run. You can read more in my article at CeliacCorner!
2. Track your symptoms. DO keep a list or journal of your health and symptoms - how often you get a cold, do you get extremely tired at the same time every day, do you have heartburn or reflux, do you often get dental cavities (dental caries)? etc. Take this list with you to your doctor as some evidence to help them better diagnose the underlying cause of all of these things! You can read more about this in a post I wrote: Self-advocacy: Building Your Case!
3. For every 100 people you know you MUST-KNOW 1 person that has Celiac Disease...if you don't it could be you! Actually, it could be you anyway - especially if a relative has Celiac Disease or even if someone you are related to has Type 1 Diabetes, Thyroid Disease, Lupus or any other autoimmune disease (The National Institutes of Health).
4. KNOW that the symptoms that are always talked about (mostly the digestive ones like diarrhea, bloating, etc.) are not THE symptoms of Celiac Disease. In fact, research shows that most people with Celiac Disease have 'nondescript' symptoms like fatigue, headaches, and other often overlooked symptoms. There is a list of over 300 documented symptoms associated with Celiac Disease so don't rule anything out.
5. The one MUST-DO NOT DO on the list: Do NOT let a physician, friend or stranger tell you to go gluten-free without getting a medical diagnosis of Celiac Disease FIRST! I have heard of, unfortunately, too many doctor's advising patients to "just go gluten-free" when lab results come back negative after their first check. For your own financial and insurance purposes, future medical care (including testing for Celiac Disease in the future), and our national statistics about Celiac Disease and gluten-related issues, it is extremely important to have a medical diagnosis on file if you really do have the disease!
6. While diagnosing Celiac Disease is not a perfect science yet - it is getting there! You MUST-KNOW that one negative blood test does not mean you do not have Celiac Disease. The disease may not be "active" at the time of first testing or the correct lab work may not have been ordered, etc. If you suspect Celiac Disease or there is a family history of it or other autoimmune you should be screened and tested regularly for it.