Written by: Bonnie Feldman, DDS, MBA, Anna Simon, Ellen M. Martin
Autoimmune disease is an “invisible epidemic.” Despite affecting roughly 16% of the US population, autoimmunity remains under-recognized, under-researched and under-served. To combat this lack of awareness, as well as to connect patients, families, and caregivers with useful resources, we at Your Autoimmunity Connection are publishing a series of “spotlights” on autoimmune diseases or other diseases that are closely linked to immune dysfunction.
For this post, we will be spotlighting celiac disease.
What is celiac disease?
Celiac disease is an autoimmune disorder that causes damage to the small intestine when gluten is ingested. About 3 million people (1%) in the US, suffer from celiac disease. When a celiac patient eats gluten – a protein in wheat, rye, and barley – it triggers an imperfectly understood abnormal immune response that damages the villi of the small intestine, inhibiting nutrient absorption. This can cause long-term ill effects, including anemia, fatigue, infertility, neurological disorders, weight loss, the development of other autoimmune conditions, and more. Though celiac is hereditary, most people with the associated genes do not ever develop the disease itself.
What are the symptoms?
- Intestinal problems
- Chronic fatigue
- Anemia, headaches
- Weight loss
- Joint pain
- Brain fog
- Menstrual irregularities
- Itchy and blistering skin
Celiac disease may also cause other autoimmune conditions, as well as inhibit growth and development (“failure to thrive”) in children due to nutrient malabsorption.
How is celiac disease diagnosed?
This symptoms checklist gives your physician a rough idea if you might have celiac. However, you must have a blood test and endoscopic biopsy of the small intestine to get a proper diagnosis. If you think you may have celiac disease, talk to your physician. Celiac disease may be confused with gluten intolerance, a reaction to other proteins in grain, or a wheat allergy, so specific testing is important.
What to do for newly diagnosed children:
- Research the gluten-free diet in detail
- The University of Chicago Celiac Disease Center will send you an educational essentials kit containing lots of useful information
- Keep a gluten-free kitchen
- Learn how to read food labels
- When cooking, make sure to avoid cross-contamination
- Find a support group like the Celiac Kids Connection or Raising Our Celiac Kids
- Learn more here
How is celiac disease treated?
Adherence to a strict gluten-free diet is the only current way to treat celiac disease.
We strongly believe that there is strength in numbers, and in raising awareness as an initial step towards action. Read on to find available statistics, research initiatives, supportive patient communities, and more resources. And check out our Facebook page and forum for more celiac-related updates!
What do the numbers show?
Current available statistics estimate that…
- An estimated 1 in 100 people have celiac disease in the US.
- If you have a first-degree relative with celiac, you have a 1 in 10 risk of developing the disease.
- People with a genetic disorder such as Down syndrome and Turner syndrome are more likely to develop the disease.
- Caucasians are more likely to have celiac disease.
- Women are more often diagnosed.
While the Celiac Disease Foundation, along with other leading organizations, works towards reevaluating the current state of celiac disease, our team at Your Autoimmunity Connection is connecting patients with one another and with currently available resources.
The good news for those of you reading this – whether you are affected by celiac disease, have a loved one who is affected, or are simply generally interested – is that the recent rise in understanding of alternative approaches suggests that lifestyle changes, especially diet, supplements, and exercise, may help moderate symptoms, reduce flares, and complement or replace the need for pharmaceutical treatments.
Connecting you with available resources
Brush up on the basics of celiac disease
If you’ve read this far, you likely already have some background knowledge about celiac, but it can’t hurt to review the basics. The following pages each provide a comprehensive overview of celiac disease:
- The Celiac Disease Foundation: Celiac Disease
- Peruse this comprehensive site dedicated to the disease, including this list of gluten-free foods and recipes.
- National Celiac Association: Resources
- Find gluten-free restaurants, recipes, support groups, and events.
- Mayo Clinic: Celiac Disease
- Delve beyond a general overview to learn about potential complications, risk factors, treatment, and more.
- Everyday Health: What is Celiac Disease?
- Learn more about the symptoms, the difference between disease, intolerance, and allergy, and more.
- Beyond Celiac: Fast Facts
- Look at these handy infographics that show statistics.
For anyone affected – find your patient community
- Celiac Disease Foundation: Find Local Support
- Find support groups specific to your region.
- Beyond Celiac: Celiac Disease Support Groups
- Read about the missions of different groups to find your best fit.
- Facebook Support Groups
- Celiac Disease Foundation: Find Local Support
What’s happening in research?
We’ve picked out a few of our favorite research resources – get caught up on recent findings, informed of future directions, and tap into your potential for involvement as a patient:
- Celiac Disease Foundation: Research News
- Read about current research.
- Beyond Celiac: Celiac Disease Research News
- Explore celiac disease articles in the news, including potential new treatments.
- NIH Clinical Trials: Celiac Disease
- Find current clinical trials on celiac disease.
- Nature: Latest Research and Reviews
- Check out another source for celiac research.
New tech tools/apps
What tools are out there for celiac disease patients? We’ve found a few cool options to help you identify and avoid gluten.
- Nima Sensor
- A portable sensor that tests a bit of your food and shows if it contains gluten.
- Gluten Detective
- An at-home test for the identification and monitoring of gluten consumption.
- Gluten Free Scanner
- An app that uses your phone to scan barcodes and detect the presence of gluten.
- Gluten Free Travel Site
- A collection of user-submitted gluten free dining and travel reviews from around the world.
- A personal digestive tracker that helps you find the foods that are most compatible with your digestive system.
What is one thing everyone should know about celiac disease?
When looking at the big picture, we must remember that celiac disease falls within the larger category of autoimmune and “autoimmune-like diseases,” of which there are more than 100 individual diagnoses. In our research, we have found that 50 million Americans suffer from one or more autoimmune diseases. What’s more, a research study estimated that approximately 25% of patients with autoimmune diseases have a tendency to develop additional autoimmune diseases.¹
We hope our spotlight on celiac disease this month connects you with beneficial resources and information, and we believe it is essential to take a holistic approach to the autoimmune disease epidemic. By looking at all autoimmune and similar diseases together, we can move away from the fragmented view that hides the magnitude of the problem and towards concerted action in reshaping research, diagnosis, and treatment. Our model is the revolution in cancer research and treatment over the past 50 years made possible by viewing cancer as a group of diseases with a common foundation, thus garnering far more resources than had been devoted to individual types of cancer.
Get acquainted with Your Autoimmunity Connection
- Check out our blog at www.drbonnie360.com for all things autoimmune – from updates in research to possible lifestyle modifications, patient stories, and more.
- Find us on Facebook here, or join our Facebook Forum to connect with patients across all autoimmune diseases.
- Read our patient guide on How to Achieve Your Optimal Wellbeing
- Read our Guide to Movement Therapy
 Cojocaru, M, Inimioara Mihaela Cojocaru, and Isabela Silosi. “Multiple Autoimmune Syndrome.” Mædica 5.2 (2010): 132–134. Print.