Your Autoimmunity Connection Spotlights are a series of posts to help raise awareness about specific autoimmune diseases. In addition, our companion Food Spotlights offer resources and relevant food information for particular diseases. Both spotlights provided educational and community resources for patients, caregivers and families. Moreover, these spotlights are for benefits managers who may not realize that an invisible yet costly epidemic lurks in their populations. Furthermore, these are useful background for entrepreneurs building products and companies to address the needs of this chronic disease population. So, this autoimmune spotlight shines on celiac disease.
The “gluten-free” diet fad seems to have taken over a big chunk of today’s nutrition industry. More than $2B in gluten-free food is sold yearly. Furthermore, endorsements from celebrities like Kourtney Kardashian and Gwyneth Paltrow have convinced many women they need to stop eating gluten. This despite that only about 1:100 people have gluten-related sensitivities. Beneath the hype, however, is an autoimmune condition that necessitates a gluten-free diet: celiac disease.
What is celiac disease and who gets it?
Celiac disease is an autoimmune disorder in which the immune system damages the lining of the small intestine in response to foods containing gluten. Consequently, the damage reduces absorption of nutrients from food. Further, it can trigger a variety of unpleasant and dangerous intestinal and systemic symptoms. About 3 million Americans (<1%) suffer from celiac disease. Worldwide prevalence, based on blood tests, is 1.4% but only .7% on biopsy. Children and adults are equally likely to have celiac disease. People of Northern European heritage, especially women, are most likely to be affected. However, the disease affects men and people of other ethnicities, too.
Causes and links to other conditions
The trigger is a sensitivity to the gliadin fraction of gluten or similar proteins found in grains: wheat, barley and rye. When a celiac patient eats gluten it triggers an imperfectly understood abnormal immune response, chronic inflammation that damages the villi of the small intestine. As you might guess, primary symptoms include intestinal distress and abnormal stools. Secondarily, the damage inhibits nutrient absorption, which can lead to weight loss or failure to gain weight. Beyond these are systemic ill effects, including dermatitis, anemia, fatigue, infertility, osteoporosis and neurological disorders.
Also linked with celiac disease is the development of other autoimmune conditions, especially Type 1 diabetes and Hashimoto thyroiditis. People with Down or Turner syndrome are also more likely to have celiac disease. Though celiac disease is hereditary, most people with the associated genes do not develop the disease itself.
Celiac disease symptoms
- Intestinal distress
- bloating, gas, abdominal pain
- diarrhea and/or constipation,
- bulky, loose, foul-smelling or greasy stools
- loss of appetite (anorexia)
- Weight loss, failure to gain weight or delayed growth in children
- Itchy and blistering skin (dermatitis herpeteformis)
- Canker sores, damaged teeth
- Chronic fatigue
- Menstrual irregularities
- Iron deficiency anemia (low blood hemoglobin)
- Vitamin D deficiency
- Headaches and “brain fog”
- Joint pain, weak bones or fractures (osteoporosis)
This symptoms checklist gives you a rough idea if you might have celiac. Anemia in the absence of intestinal bleeding is a particularly strong indication. Similar symptoms in other family members are also a clue. If you think you may have celiac disease, talk to your primary care provider.
How is celiac disease diagnosed?
Symptoms of celiac disease may be confused with those of other intestinal disorders. For example, gluten intolerance, a reaction to other grain proteins, wheat allergy, or FODMAP sensitivities from foods other than grains. Other disease with similar symptoms are Irritable Bowel Syndrome (IBS) and Crohn’s Disease. Therefore, celiac disease is often missed or misdiagnosed as another disease.
If symptoms suggest celiac disease you will need further testing to confirm. Therefore, your doctor will order an endoscopic biopsy to get a proper diagnosis. Even a biopsy does not eliminate the possibility of other diseases like sprue, bacterial overgrowth or giardiasis. Therefore, your doctor will likely order blood tests looking for particular biomarkers. As you might guess in an autoimmune disease, these include antibodies against certain intestinal wall proteins. These markers can also be useful in screening family members or monitoring a gluten-free diet. Additionally, genetic testing may be helpful in confirming the diagnosis.
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. This is easier than it’s ever been due to the popularity of gluten-free diets, however inappropriate. Nevertheless, the fad has prompted food manufacturers to produce and label many gluten-free foods. Nevertheless, it may be difficult to avoid gluten, which is often used as a food additive and is ubiquitous in wheat products. Fortunately, response to a gluten-free diet, if you really have celiac disease, is rapid. Unfortunately, even tiny amounts of gluten can trigger a relapse. But, there are ways to test your food, too, see below. Because it can be challenging, there are many support groups to help you stick to it. See our list of patient communities below.
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!
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 chromosomal disorders such as Down 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.
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 autoimmune and celiac disease, but it can’t hurt to review the basics. The following pages 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
- Connect online with other patients to receive and offer helpful knowledge and support. A quick search will yield several options, but the patients in these forums seem to be particularly active and engaged:
What’s happening in celiac research?
We’ve selected a few of our favorite research resources on autoimmune celiac disease. Get informed on recent findings and future directions. 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 autoimmune 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
- User-submitted gluten-free dining and travel reviews from around the world.
- Aire
- 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?
Remember that celiac disease falls within the larger category of autoimmune and chronic inflammatory diseases, of which there are more than 100. 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 are likely to develop additional autoimmune diseases.¹
We hope our spotlight on celiac disease connects you with useful resources and information. Furthermore, we believe it is essential to take a holistic approach to the autoimmune disease epidemic. By looking at all chronic inflammatory diseases together, we can change the fragmented view that hides the size of the problem. This is a needed step 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, garnering far more resources than had been devoted to individual types of cancer.
Written by: Bonnie Feldman, DDS, MBA, Anna Simon, Ellen M. Martin
Why autoimmune disease?
Autoimmune disease is an “invisible epidemic.” Despite affecting roughly 16% of the US population (as many as cancer), autoimmune and other chronic inflammatory diseases remain under-recognized, under-researched and under-served. In order to raise awareness and connect patients, families and caregivers with useful resources, we at Your Autoimmunity Connection publish this series of “spotlights” on autoimmune diseases.
Chronic inflammatory diseases are high-beta, high-risk and high-cost to payers and providers, especially for employer-sponsored health care benefits programs. Therefore, these spotlights offer useful background for benefits managers and digital entrepreneurs building companies and products addressing these diseases.
More resources from 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
- Check out our other spotlights here.
[1] Cojocaru, M, Inimioara Mihaela Cojocaru, and Isabela Silosi. “Multiple Autoimmune Syndrome.” Mædica 5.2 (2010): 132–134. Print.
