Celiac disease is a condition where the immune system reacts negatively when gluten is consumed. Predominantly affecting the small intestine, this disease can cause harm resulting in a person being unable to “absorb” the nutrients from their food. Currently, the only treatment for celiac is to eat a dedicated gluten free diet. While 1 in 133 people have celiac, many people go untested or misdiagnosed and untreated, suffering from symptoms and challenges they don’t need too. 

The Celiac Disease Foundation reports that there are 2.5 million people in America who have celiac disease but are undiagnosed. That is approximately 0.8% of the 328.2 million people in the United States as of 2019. 

Knowing your family history is useful in determining whether or not you might be at risk for celiac disease as there is a strong genetic component to the condition. Per the National Institute of Health Genomics Home Reference, a person has a 4% to 15% chance of having celiac disease if any first-degree relatives are affected. The NIH has a genetic testing registry that details the “modes of inheritance” for the disease: heterogeneous, autosomal recessive inheritance, or multifactorial inheritance. More research can be found by exploring the registry

Even if a person has no noticeable symptoms, that doesn’t mean that they don’t have celiac disease. It has been dubbed “silent” celiac disease due to the lack of presenting symptoms. However, people with this type of manifestation often will have internal problems that have gone unnoticed or aren’t thought to be abnormal. 

Early Stages of Diagnosis 

In the early stages of being diagnosed with celiac disease, it can be hard to identify some of the symptoms that would indicate seeking medical help. The Mayo Clinic emphasizes the importance of going to your primary care doctor if you have gastrointestinal discomfort for longer than a two week period. In children, symptoms can include bloating, paleness, frequent diarrhea, delayed growth, constipation, weight loss, vomiting, and more. If you are noticing any of these symptoms, it is extremely important to seek help as soon as possible due to the potential impact it can have on your overall health. The longer celiac disease goes without being treated, the higher the risk for other medical problems.

Long Term Impact of Untreated Celiac Disease 

Living with untreated celiac disease can cause negative outcomes, resulting from a lack of lifestyle adjustment and treatment. According to the Celiac Disease Foundation, a person with untreated symptoms can be at an increased risk for

  • lactose intolerance,
  • vitamin and mineral deficiencies, 
  • gallbladder malfunctions, 
  • central and peripheral nervous system disorders, 
  • intestinal lymphomas and other cancers of the gastrointestinal system, 
  • early onset osteoporosis, 
  • higher risk for specific types of cancer,
  • osteopenia, or
  • infertility or miscarriage. 

Increased Chances of Developing Other Autoimmune Conditions & Insufficient Nutrients

Neurological conditions such as ataxia, epileptic seizures, migraine, neuropathy, myopathy, multifocal leukoencephalopathy, and even dementia are also a concern. In fact, if a person is over the age of 20 at the time of diagnosis with celiac disease, they are 34% likely to develop other autoimmune conditions. 

Nutritional deficiencies can be present with untreated celiac disease. Kreutz, Adriaanse, van der Ploeg, and Vreugdenhil (2020) conducted an analysis that reviewed articles focused on nutrients in a gluten free diet in people with treated and untreated celiac disease. 

For those with untreated symptoms, deficiency in nutrients such as iron; vitamins D, B12, B6; folic acid; magnesium, calcium, and zinc associated with an improper gluten-free diet were noticed predominantly in both children and adults (1). However, the researchers were unable to find a comprehensive percentage of how many people are actually affected by nutritional deficiencies. This is indicative of a need for more specific research on the topic. 

In a recent study conducted by Sattgast et al. (2020) looking at epidemiological celiac disease research, it was found that 1 out of every 285 people in the United States has untreated celiac disease. Out of those who were untreated, lower levels of bone density were noticed (2). 

Decreased Quality of Life Because of Continual Health Challenges 

Additionally, a person’s quality of life will be significantly impacted by the effects of continuing to consume a diet with gluten when their gut is harmed by or is intolerant of such ingredients. As to be expected, the more a person consumes gluten with untreated celiac disease, the more gastrointestinal problems they will see. Symptoms like gas, bloating, and diarrhea are intrusive and unfavorable to most. Being mindful of the products you eat and their gluten concentration will potentially help mitigate any symptoms. 

Clearly, there are many impacts on a person’s health from having untreated celiac disease. Having an annual physical and checkup with your primary care doctor is also a great preventative tool for understanding if the symptoms you have come from celiac disease.  Meijer, Shamir, Szajewska, and Mearin (2018) report that early diagnosis and treatment are some of the best preventative measures possible in both adults and children (3). 

Monitoring symptoms can be challenging, especially when dealing with very young children. The best thing you can do to, hopefully, prevent any major complications is stay aware of your body and any abnormal health symptoms that might occur – especially if you have a family history of celiac. Keeping an active and healthy lifestyle is always recommended. 

Overall, as we have watched our family struggle, learn and grow through the challenges of celiac, we continue to see that once you are diagnosed it is important that you stick to the gluten free diet. Your health and happiness are important, and while it can be challenging at first we do promise that it gets better, and you can find food that makes life taste good again.

We offer a wide variety of products that are tested to high standards (5ppm) gluten, ranging from oat flour and cornbread mix to all-purpose gluten-free flour to steel-cut oats and pinto beans. These gluten-free options are safe, healthy, and delicious.  

Learn more about adjusting to life after being diagnosed, finding gluten free meals, and check out our gluten free recipes that we have been using in our family to enjoy our meals again. 

(1) Kreutz, J. M., Adriaanse, M. P., van der Ploeg, E., & Vreugdenhil, A. C. (2020). Narrative Review: Nutrient Deficiencies in Adults and Children with Treated and Untreated Celiac Disease. Nutrients, 12(2), 500.

(2) Sattgast, L. H., Gallo, S., Frankenfeld, C. L., Moshfegh, A. J., & Slavin, M. (2020). Nutritional intake and bone health among adults with probable undiagnosed, untreated Celiac disease: What We Eat in America and NHANES 2009–2014. Journal of the American College of Nutrition, 39(2), 112-121.

(3) Meijer, C., Shamir, R., Szajewska, H., & Mearin, L. (2018). Celiac disease prevention. Frontiers in Pediatrics, 6, 368.