Guest Blog: Celiac Disease: A Clinical Chameleon
By: Bailey Arman, Associate Director, Communications, Beyond Celiac
May is Celiac Awareness Month (CAM)! In honor of CAM, Beyond Celiac invites everyone to learn more about this serious autoimmune disease to help those currently suffering.
Fast Facts
Celiac disease is an autoimmune disorder that affects approximately one percent of the human population, including over 3.1 million people in the U.S. However, between 50 to 80 percent remain undiagnosed. Left untreated, celiac disease damages the small intestine and can lead to a range of complications, including infertility, brain damage, and even certain cancers.
Symptoms of celiac disease are wide, varied, and include:
- Anemia
- Anxiety
- Bloating
- Brain fog
- Delayed growth
- Depression
- Diarrhea
- Discolored or pitted teeth
- Fatigue
- Hair loss
- Infertility
- Itchy rash (dermatitis herpetiformis)
- Joint pain
- Tingling in the hands and feet
Patients may have a hundred symptoms or no symptoms at all (asymptomatic). Symptoms can be neurological, gastrointestinal, or even dermal. Visit Beyond Celiac to learn more about the signs that someone may have celiac disease.
The Struggle to Get Diagnosed
Celiac disease is sometimes called a “clinical chameleon” because of the vast range of symptoms patients can experience, and many of those symptoms overlap with conditions like thyroid disease, irritable bowel syndrome (IBS), Crohn’s disease, and lactose intolerance.
To screen for celiac disease, most doctors will order a simple TTG blood test. However, it is important to note that this test has been inaccurate in Black patients. The gold standard for diagnosis is and always has been an upper endoscopy with biopsy.
A Burdensome Treatment: The Gluten-Free Diet
Unlike most autoimmune conditions, there is no medication for celiac disease. The only existing treatment is a strict, lifelong, gluten-free diet (GFD). Gluten is found in wheat, barley, and rye, so patients with celiac disease must avoid anything containing those ingredients. Even gluten consumption the size of a crumb could make someone with celiac disease sick, leading to short-term symptoms and, if left untreated, serious complications.
Unfortunately, a GFD is expensive and can be socially isolating. Many patients report that the GFD lessens their quality of life, making it difficult to travel, go to school, dine out, or participate in everyday activities and celebrations.
There is also a stigma associated with the GFD. While gluten-free options have improved in quality and taste in the past decade, the rise in awareness of the diet has led to some judgment from those who believe it is a fad to lose weight rather than a necessary medical treatment.
The Future is Bright
Despite the serious challenges patients with celiac disease face, we at Beyond Celiac have immense hope for the future of our community. We are actively funding research into the condition and partnering with major pharmaceutical companies, stakeholders, and even the Food and Drug Administration (FDA) to develop a real treatment beyond the gluten-free diet.
With support, we can create a better world for those with celiac disease. Patients can enroll in research and clinical trials to further our understanding of the condition; health care professionals can study the signs and symptoms to improve diagnosis rates; and the average person can learn about celiac disease, leading to more widespread acceptance of the GFD as a medical necessity and not a fad diet. Finally, a donation to celiac disease research can further deepen our knowledge and awareness of this autoimmune condition.
Celiac Disease Resources
To learn more about celiac disease, check out the following resources:
- Symptoms Checklist
- Getting Tested
- Getting Started Guide
- Clinical Trials
- Celiac Straight Talk Podcast
- Follow Beyond Celiac on Instagram, Facebook, and TikTok
Life with an autoimmune condition like celiac disease has its challenges, but there is a community of people waiting to support you. If you have questions as a patient, health care professional, or are interested in our organization, please reach out. By working together, we are confident that we will one day live in a world Beyond Celiac.
About Beyond Celiac
Since 2003, Beyond Celiac has been the leading patient advocacy and research-driven celiac disease organization working to drive diagnosis, advance research, and accelerate the discovery of new treatments and a cure.
Beyond Celiac is a member of the National Health Council. For more information on NHC membership, please email membership@nhcouncil.org.
