This article was contributed by Tiffany Torok, MA, RDN
While many people think of celiac disease (also known as celiac sprue and coeliac disease) as an allergy or food intolerance to gluten, it is, in fact, a serious autoimmune disease that, if left untreated, has numerous long-term complications. In the United States, an estimated 1% of the population has celiac disease, while many remain undiagnosed (Fasano, A. & Catassi, C., 2012).
Causes and Risk Factors of Celiac Disease
Genetics – Genetics play a role in why someone develops celiac disease during their lifetime. Close family members of someone with it are at an increased risk of developing it.
Downs Syndrome – Additionally, individuals with Down syndrome are at an increased risk of developing celiac disease.
Other Risk Factors – Other risk factors include having another autoimmune disease, having dermatitis herpetiformis, and having a family history of the disease (Alaedini, A. & Green, P., 2005). The only treatment for Celiac Disease is a lifelong gluten-free diet. Thankfully, there are new treatment options on the horizon that are currently being researched and tested.
Tiffany’s Personal Celiac Story
After experiencing digestive symptoms most of my teen years and into my 20s, I was diagnosed with Celiac Disease and Graves disease when I was 25. During that time, my abdominal pain was so bad that I felt like I was digesting glass and experiencing diarrhea up to ten times a day.
I had iron-deficiency anemia, a B12 deficiency, and a zinc deficiency, as well as lactose intolerance.
I also began to have migraines and was so exhausted that I had to drop out of college and stop working for a year until I was feeling better. I developed a small intestinal bacterial overgrowth and other digestive problems.
Blood Tests, Upper Endoscopy, and Celiac Diagnosis
My primary care physician told me to “just eat white,” which is probably the worst thing someone with undiagnosed Celiac Disease could do. I was finally referred to a gastroenterologist who performed an upper endoscopy with a small camera and took biopsies. My intestines were so damaged that he could tell before the pathology report that I likely had the disease. He confirmed the diagnosis of celiac disease with a tissue transglutaminase antibody blood test. The test results were positive for both the bloodwork and the biopsy.
Navigating a Whole New World with Celiac Disease
Suddenly, I entered a new world of navigating grocery stores and restaurants at a time when awareness about Celiac Disease and the gluten-free diet was low-to-non-existent. I had to learn how to eat gluten- and lactose-free and manage the ongoing symptoms of SIBO. I cried the first time I went to a grocery store and lived on Amy’s kitchen meals until I learned how to eat right for my new disease. However, this experience made me want to switch majors when I returned to school and become a Registered Dietitian. Now, 17 years later, the manufactured gluten-free food market has exploded. Many restaurants now offer gluten-friendly menus, and there are dedicated gluten-free restaurants in most larger cities nationwide.
What are the Early Symptoms of Celiac Disease?
Unfortunately, there is no single canary in the coal mine regarding early warning signs for celiac disease. With over 300 symptoms, celiac disease can often be mistaken for other conditions or go undetected for years before someone is accurately diagnosed.
However, the most common presenting symptoms of celiac disease are:
- Diarrhea or Constipation
- Abdominal Pain
- Headaches and Migraine
- Unintentional Weight Loss
- Brain Fog and Fatigue
Nutritional Deficiencies with Celiac Disease
Additionally, people with celiac disease often have nutritional deficiencies, including:
- Iron Deficiency Anemia
- B12 and/or Folate Deficiency
- Vitamin D Deficiency
Celiac disease can cause other problems, such as osteoporosis and lactose intolerance (Gurjal, et al., 2012).
In children, often, the first signs of celiac disease are poor growth, which includes short stature, as well as gastrointestinal symptoms such as stomach pain and changes in bowel movements.
How Does Gluten Trigger Celiac Disease?
The immune response for people with Celiac Disease is triggered when the protein gluten, which makes up part of the endosperm of some grains, is broken down in the lining of the intestines for absorption.
Products made with wheat, barley, and rye all contain gluten. Additionally, many oats and oat products are contaminated with gluten during the harvesting and storing process (Gluten Intolerance Group, 2021).
Since wheat is a massive part of the diet in North America, many processed food products are contaminated with gluten during manufacturing. Thankfully, most grocery stores now offer affordable, delicious gluten-free foods.
What Happens When a Celiac Eats Gluten?
The amount of gluten it takes to elicit an autoimmune response in people with Celiac Disease is very small. The globally acceptable amount of gluten that can go undetected by the body is 20ppm or between 10-50 mg of gluten spread out over the course of a day (Catssi, et al, 2007). This equates to crumbs for those on the more sensitive end of the spectrum.
When a person who has Celiac Disease eats gluten, the immune system in their GI tract thinks that it is under attack and instead of neutralizing the attack, the immune system ends up destroying the intestinal villi, which are finger-like projections in the intestines and are the site of nutrient absorption (Gurjal, et al. 2012).
This intestinal damage causes the pain and other GI symptoms that people with Celiac Disease experience when they eat gluten because the lining of the small intestine becomes inflamed.
What Is The Celiac Disease Diet?
Individuals with celiac disease can eat all fresh fruits and vegetables as these are naturally gluten-free. As is all fresh meats and seafood. There are also many naturally gluten-free grains, including cornmeal, rice, quinoa, buckwheat, tapioca, millet, and amaranth. However, these need to be labeled gluten-free due to cross-contamination risks. Nuts and beans are also naturally gluten-free but must be checked for cross-contamination. Many recipes and resources on the web help you learn to cook gluten-free meals.
Celiac Disease Survival Tips
Tip 1- Read Labels and Become a Hidden Gluten Sleuth
There are a lot of things that change in your life after a Celiac Disease diagnosis. First, you must get used to reading nutrition labels and becoming a hidden gluten sleuth. I recommend to my newly diagnosed patients to download an app to identify gluten-free foods at the grocery store and choose labeled gluten-free foods when learning how to navigate the grocery store and confusing ingredient lists.
Tip 2 – Focus on Fresh, Unprocessed Foods
The best way to adhere to a strict gluten-free diet is to avoid processed foods and try to eat whole foods; however, this is not readily achievable for everyone due to our busy lives, financial constraints, and knowledge gaps.
Tip 3 – Have a Gluten-Free Kitchen or dedicated Gluten-Free Cooking and Food Storage Area
Having a completely gluten-free kitchen is another way to avoid cross-contamination, but this can be especially hard for parents of children when only one person in the house has Celiac Disease.
In this case, I recommend having separate areas in the pantry and fridge for gluten-free food and having a dedicated cabinet with a dedicated gluten-free toaster, pots, pans, and a hand mixer stored and only cleaning these items with a dedicated gluten-free sponge.
Tip 4 – Carry Gluten-Free Snacks with You at All Times
Another tip that I like to recommend is to keep some gluten-free snacks with you at all times. This will help avoid poor food choices while you are running errands or out with the kids.
Tip 5 – Call Ahead to Restaurants
Lastly, I recommend calling restaurants that claim to have a gluten-free menu ahead of time during non-busy hours to ask how those dishes are prepared to see if there will be an issue with cross-contamination.
Living with Celiac Disease
Thank you Tiffany Torok, MA, RDN for sharing your Celiac Story with our readers. It was fascinating and informative.
Navigating a gluten-free diet is a whole new challenge and adventure. Over time, what feels overwhelming will become a natural part of your life. At least, that was my experience and why we decided to create Delectable Food Life.
I hope you enjoyed this blog post if you did send us a note! We love hearing from our readers. You can also sign up for our weekly newsletter for gluten-free resources and recipes like this delicious Gluten-Free Oatmeal Raisin Cookie Recipe.
References and Resources
367, 2419-2426. doi: 10.1056/NEJMcp1113994
Alaedini, A. & Green, P. (2005). Narrative review: Celiac disease: Understanding a Complex autoimmune disorder. Annals of Internal Medicine, 142(4), 289-98. doi:10.7326/0003-4819-142-4-200502150-00011
Gujral, N., Freeman, H., & Thomson, A. (2012). Celiac disease: Prevalence, Diagnosis, pathogenesis, and treatment. World Journal of Gastroenterology,
18(42), 6036-6059. doi: 10.3748/wgj.v18.i42.6036
Catassi, C., Fabiani, E., Giuseppe, I., D’Agate, C., Francavilla, R., Biagi, F., … Fasano,