May is Celiac Disease Awareness Month, a time where people with celiac disease, their families, and service providers can raise their voices and amplify the conversation to advance diagnosis, treatments, and a cure for the disease. May 16th is also International Celiac Disease Awareness Day and countries around the world organize campaigns and informative sessions to share information about the latest research, treatments, early diagnosis campaigns, and diets that can help people with celiac disease and gluten-related issues to improve their well-being.
According to the Celiac Disease Foundation, celiac disease is a serious autoimmune disease where the ingestion of gluten leads to damage in the small intestine. Celiac disease occurs in people who are genetically predisposed. It affects 1 in 100 people around the world; however, only about 30% are properly diagnosed. Gluten is a protein that is found in foods like wheat, rye, and barley. Celiac disease may develop at any age after people start to consume gluten. Celiac disease may lead to additional serious health problems, such as heart disease, malnutrition, small intestine cancers, and/or neurological symptoms and disorders. The only treatment currently is a lifelong adherence to a strict gluten-free diet.
NARIC’s Bilingual Information and Media Specialist, Marta Garcia, was diagnosed with celiac disease in 2019. They share their journey to a diagnosis:
I was originally diagnosed with irritable bowel syndrome (IBS) when I was in my early twenties, and I dealt with my symptoms as best as I could. Back then, I was not aware of how gluten could affect my health. I lived with the IBS diagnosis for over twenty years. As the years passed, my symptoms got worse: constipation and diarrhea occurred more often, constant bloating, and increasing headaches, among others. I worked with my doctor and a nutritionist to find ways to relieve my symptoms, but to no avail.
A few years ago, I went through an elimination diet after it was suggested by a nutritionist and ok’d by my doctor. I went through this process for over six months, eliminating foods from my diet and journaling my body’s response to each food as it was taken out of my diet and then re-introduced. I shared the information that I had gathered with my doctor, who reviewed it and suggested that I be tested for gluten sensitivity. The first part of this testing was a blood test. The results showed that I was very sensitive to gluten.
So, my doctor suggested an endoscopy so that we could get a better idea of how severe my sensitivity was. During the appointment, the doctor gave me a pill to swallow that had a teeny-tiny camera inside. The camera was able to take pictures of my stomach and intestines and transmit them to my doctor as it made its way through my gastrointestinal system. How cool is that? A less invasive way to find out what was going on!
After going through the images from the endoscopy, my doctor called me and gave me a diagnosis: Celiac disease. She gave me information on the disease itself, information on following a strict gluten-free diet, and where I could go for support. I learned a lot about celiac disease during that first year. And, thanks to my work at NARIC, I knew to look through research literature related to celiac disease and other digestive issues indexed in our REHABDATA database and go through places like the National Library of Medicine to find out about the latest research being done on celiac disease.
It has been about five years since my diagnosis. From being mis-diagnosed all those years ago to finally being diagnosed with celiac disease and figuring out how to live my best life with a strict diet, it certainly has been a challenge. I am very grateful for the support from my family, friends, and co-workers as I navigate eating gluten-free foods to help manage my symptoms and flares. I am also very grateful for the research being done and for the organizations leading the way in raising awareness. I am also grateful for the incredible content creators who share their experiences living with celiac disease, as they made me feel less alone while navigating through my diagnosis during the COVID-19 pandemic.
Have you or a loved one been diagnosed recently with celiac disease or gluten sensitivity? Mx. Garcia suggests the following resources to help you get started on your gluten-free journey:
- The Celiac Disease Foundation is a leading patient advocacy organization committed to accelerating diagnosis, treatments, and a cure for celiac disease. As part of their work, the Foundation created Eat! GF, an app that provides information on advocacy, news, and resources related to celiac disease; shares information about celiac disease-related organizations around the world; shares information about gluten-free foods; and provides gluten-free meal plans and recipes.
- The National Celiac Association (NCA) is a non-profit organization that is dedicated to educating and advocating for individuals with celiac disease and gluten sensitivities, their families, and communities. NCA provides gluten-free recipes, information on certified gluten-free products and restaurants, and a searchable restaurant directory. NCA’s calendar of events provides information on support groups, webinars, and other events of interest.
- Beyond Celiac is a patient advocacy and research-driven organization that works to drive diagnosis, advance research, and accelerate the discovery of new treatments and a cure. Through Living with Celiac Disease, Beyond Celiac provides information, resources, and support for people of all ages living with celiac disease and their families, including a guide for those who have been newly diagnosed. This organization also provides a list of support groups in Canada and the US.
If you or a loved one are experiencing symptoms, please contact your doctor to get tested. Contact NARIC’s information specialists to learn more about celiac disease and gluten sensitivities.
