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Is Celiac Disease Fatal?

Celiac disease can cause a lot of damage and discomfort, but is there a possibility that celiac is more harmful than you previously thought? Can celiac disease kill you? 

To be clear, celiac disease cannot acutely cause death. However, if the needed diet change is ignored gluten induced damage can accumulate and affect the different systems of your body, progressing into diseases that lead to death.  Let’s dig a little deeper to learn why, and how.

What is celiac disease?

Celiac disease is an autoimmune condition that is triggered by the ingestion of gluten. When you have celiac disease, your body perceives gluten as an invader, which causes your body to launch an immune response. This causes inflammation in the intestinal tract and other parts of the body. Systemic inflammation then contributes to further autoimmunity and health concerns. Those who have celiac disease need to avoid gluten, a type of protein found in grains.

While it is difficult to assess the incidence of celiac disease, some recent estimates indicate that celiac disease affects about 1.4% of the population. In addition, it is believed that the incidence of celiac disease is increasing. This is likely due in part to a wider knowledge of the disease, plus better recognition of symptoms and more widespread testing for the disease. However, there is also likely a true increase of celiac disease thanks to changes in the food system and environment that may promote changes in gut health and loss of tolerance to dietary gluten.

In addition to the 1.4% or more of the population that has celiac disease, many more experience non celiac gluten sensitivity (NCGS). Those with gluten sensitivity may not test positive for celiac disease (note this may be a false negative, more on that here), but they still experience detrimental symptoms from gluten exposure. Just like those with celiac, those with NCGS benefit from following a gluten free diet as well.

Typically, those with celiac disease or gluten sensitivity are told to avoid “gluten containing grains” – wheat, rye, and barley. They may also be told to be cautious with oats. However, the truth is that all grains contain a form of gluten, and can be hard for your body to digest. Many people who believe they are following a strict gluten free diet may still experience symptoms since they are unknowingly ingesting gluten. 

Side effects of celiac disease

The symptoms of celiac disease can vary greatly from person to person which can make a diagnosis challenging. Common symptoms of celiac disease span far beyond the typical gastrointestinal symptoms that are commonly discussed. Symptoms of celiac disease may include the following:

But, is celiac disease fatal?

Celiac disease and Non Celiac Gluten Sensitivity (NCGS) aren’t life-threatening if a gluten free diet is followed. However, if left unmanaged, they can lead to health issues that may shorten one’s lifespan. Untreated celiac disease and NCGS can result in various health complications, including nutritional deficiencies, cancers, bone loss, autoimmune diseases, cardiovascular disease, neurological damage, psychiatric problems, and even early death.  

There are complications that can arise when those with celiac disease and NCGS  do not adhere to a gluten free diet.  And though celiac and NCGS are not acutely fatal, if ignored, can increase the risk of many deadly diseases.

Complications of Untreated Celiac & NCGS

There are a number of recognized complications linked to chronic gluten exposure in those with celiac and NCGS that can impact health, quality of life, and risk of early death.  Several of these are listed below.  For a comprehensive list of symptoms linked to gluten, you may want to access our Ultimate Guide on the topic here.

Gluten & Cardiovascular Disease

Cardiovascular diseases (CVDs) are the leading cause of death globally, taking an estimated 17.9 million lives each year.  Recent studies indicate that individuals with CD are at a higher risk of developing overall CVD, including an increased risk of myocardial infarction and atrial fibrillation.

Gluten & Nutritional Deficiencies

Nutrition plays a major role in a person’s development, the processing of information in the body, and the progression towards disease. Being properly nourished is crucial to overall quality of life and longevity. Therefore, improper or insufficient nutrition, or a nutrient deficiency, can disrupt the body’s ability to heal and repair itself but also can cause disease that can lead to death. Unfortunately, those with celiac disease or gluten sensitivity are especially prone to nutritional deficiencies due to the body’s lack of ability to properly absorb nutrients in the gut. 

When a person with celiac disease adopts a gluten free diet, their body will slowly heal so that they are able to absorb nutrients again. However, nutrient deficiencies often already exist, so supplementing with high quality and gluten free supplements is important in order to support optimal nutrient levels.  Learn more about why supplementation is helpful and what to look for when selecting supplements here

Gluten and Cancer

Cancer is the second leading cause of death in the United States, with more than 1.5 million new cases diagnosed per year. 

Research has shown an increased risk of developing cancer for those with gluten sensitivity who fail to follow a strict gluten free diet. For cancers of the mouth, esophagus and pharynx, there was a 22.7% increased relative risk. For lymphoma, there was a 77.8% increased relative risk.

Other research studies have shown that those with celiac disease who fail to comply to gluten free dietary restrictions have an increased risk for cancers of the intestine, colon, rectum, esophagus, thyroid, pancreas, skin, liver, and stomach.

Gluten and Autoimmune Diseases

There are a wide range of autoimmune diseases, many of which can impact the body in ways that affect life span. Research has linked the autoimmune spectrum of diseases to celiac disease and gluten sensitivity. It is believed that in those susceptible, gluten affects the microbiome and increases intestinal permeability, increases oxidative stress and inflammation, and increases apoptosis (cell death) and decreases cell viability and differentiation.

Gluten and Bone Loss

Celiac disease can contribute to the development of osteoporosis both directly and indirectly. Science even suggests that in some cases of celiac disease, bone loss may be the only symptom. Studies show that osteoporosis is more severe in those with celiac disease and the severity of celiac disease leads to more severe cases of bone loss. There are also studies that show celiac disease increases your risk for bone fractures. However, the good news is that a gluten-free diet has been shown to significantly increase bone mass density in those with both celiac disease and bone loss.

Gluten and Neurological Disease

Research suggests that people with celiac disease are at an increased risk of several manifestations of neurological disease, primarily peripheral neuropathy and gluten ataxia. However, adherence to a gluten-free diet appeared to improve symptoms of both neuropathy and ataxia.

Gluten and Psychiatric Diseases

Psychiatric diseases and mental health concerns can shorten lifespan. Research has found that childhood celiac disease is associated with an increased risk of subsequent psychiatric disorders, which persists into adulthood.

Gluten and Early Death

A study that looked at the prevalence of undiagnosed celiac disease found that it was associated with a nearly 4-fold increased risk of death. A different study found that all-cause mortality was 43% higher in those with celiac disease than in the general population, while another study found that the increase was 57%. In adults, it is believed that the increased risk may be due to hematological malignancies, but research suggests that this is the case only in cases of undiagnosed celiac disease. 

Effectively managing celiac disease & NCGS

Celiac disease has no known cure. The only method of “treating” or dealing with celiac disease is to switch to eliminate gluten-containing foods from the diet. While this might seem straightforward, the unfortunate reality is that many products are marketed as gluten free when they actually contain hidden sources of gluten. Therefore it is critical to understand how to read labels and what to look for so that you can properly avoid gluten in your diet. 

Plenty of nutritious and delicious foods exist that are naturally gluten free, and fortunately, they are typically better for your health than their gluten containing counterparts. 

Expect Positive Visual Changes From Gluten Elimination

Once your body starts to heal, the positive changes that come from eliminating gluten from your diet will be motivation to continue on the journey. These positive changes may include the following:

  • Smoother, more comfortable digestion
  • Clearer skin
  • Better energy
  • A more focused mind
  • Better sleep
  • Improved nutrient status
  • Better exercise tolerance
  • Less joint pain and discomfort

To sum it all up

So, is celiac disease fatal? Please don’t fear that your life is at risk if you have been diagnosed with celiac disease and are actively managing it through a gluten free diet and lifestyle. The risk of death as it relates to celiac disease is in cases where it is left undiagnosed and untreated. In these cases, celiac disease has the possibility to bloom into a variety of life threatening diseases and medical complications. 

We understand that navigating the complexities of a gluten free lifestyle can feel overwhelming, so we at Gluten Free Society share a wealth of free information that includes the latest research, helpful tips and recipes, and answers to the questions that so many people have when on the gluten free journey. And if you are uncertain if you have celiac disease, take our gluten sensitivity quiz!

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