Celiac disease is a genetic, inflammatory, systemic autoimmune disease. I was diagnosed with celiac disease in 2010 after searching for 8 years for an answer to low bone density and some mild gastrointestinal discomfort. Since then I’ve worked as a dietitian with many, many people who have been recently diagnosed with celiac disease to ensure that they get the education and care that they need. Most of the time the diagnosis of celiac disease is supported by proper diet and lifestyle education. I’ve also worked with many people to navigate the complicated process of becoming diagnosed with celiac disease, after years of dealing with unexplained health problems. May is Celiac Disease Awareness Month. Please spread the word.
Why is celiac disease difficult to diagnose?
Unfortunately it was only 10 years ago that a landmark study was published to document the true prevalence of celiac disease and it’s presentation. This study has begun to shift the way that healthcare providers are trained, but historically physicians have been trained that celiac disease is a rare disease of childhood that presents with diarrhea and malnutrition. However, the reality is that only 35% of people present with diarrhea, only 16.7% of people are diagnosed as children and celiac disease is common, affecting 1 in 133 Americans. Training and awareness of the realities of celiac disease haven’t caught up with health care training and so often physicians, nurses and others aren’t trained to look for celiac disease.
Additionally, the tests and procedures to diagnose celiac disease are not straightforward. Thus, many providers don’t know what tests to order or how to interpret the results. Thus, if you suspect that you may have celiac disease, it is crucial to connect with a celiac-aware medical professional.
What is the prevalence of celiac disease?
- In people with infertility: 1 in 16
- In people with type 1 diabetes: 1 in 23
- In people with anemia: 1 in 24
- In people with chronic diarrhea: 1 in 26
- In people with joint pain: 1 in 31
- In people with abdominal pain: 1 in 31
- In people with fatigue: 1 in 34
- In people with constipation: 1 in 38
- In people with osteoporosis: 1 in 39
- In people with first-degree relative (parent, child, sibling) who has celiac disease : 1 in 22
- In people with second-degree relative (aunt, uncle, cousin) who has celiac disease: 1 in 39
- In people with a super itchy, burning rash that appears symmetrical on the body: 1 in 1, since this is dermatitis herpetiformis, which is celiac disease manifesting in the skin
- In average healthy people: 1 in 133
How is celiac disease diagnosed?
There continues to be challenges to diagnosing this complex disease. Updated guidelines for diagnosis were published last year, in 2013. Here’s the bottom line:
- Connect with a healthcare practitioner knowledgable about celiac disease.
- Screen for celiac disease with blood tests before going on a gluten-free diet.
- If blood tests are negative, yet there is good reason to suspect celiac disease, pursue further testing, either with advanced blood tests or an endoscope with multiple biopsies to assess for celiac disease.
- You may think that a biopsy procedure would be a slam-dunk diagnosis, but the biopsies have to be done correctly. A study published in 2011 found that biopsy protocol guidelines are adhered to only 35% of the time, which means that there is a high risk of the biopsy procedure being done inaccurately and thus giving incorrect results. If you have this procedure, it’s okay for you to talk with your doctor about how the biopsies will be performed.
What can you do?
Start by clicking here for a Celiac Disease Checklist to Share. Read the list of signs, symptoms and related conditions and forward this post to others you care about. If you think you may have celiac disease, contact your general physician and me. If you don’t contact me, please do connect with someone who is well-versed with celiac disease to help you navigate this road.
Learn more about Celiac Disease Awareness Month by clicking here.
Photo Credit: Scientific American, Celiac Disease Insights, Clues to Solving Autoimmunity
Material on this blog is provided for informational purposes only. It is general information that may not apply to you as an individual, and is not a substitute for personalized nutrition or health advice or healthcare. Never disregard medical advice or delay seeking medical care because of something you have read or accessed through this website.