Not Every Celiac Has Symptoms

There are over 300 signs and symptoms of celiac disease.

These symptoms may vary widely, be subtle, or appear unconnected. Often, they are assumed to be caused by other problems. 

To make matters even more confusing, not every celiac has symptoms.

What is Silent Celiac Disease?

Some people with celiac disease do not experience symptoms. This is called “silent celiac disease” or “asymptomatic celiac disease.”

The prevalence of silent celiac disease is not known, but it may be higher than previously assumed.

A study published in Mayo Clinic Proceedings looked at the potential prevalence of celiac disease among family members. In families with one person diagnosed with celiac disease, they found that 44% of their close relatives who had blood tests for celiac disease turned out to also have the condition.

Nearly all of them had atypical (i.e., non-classic) or no symptoms at all.

These results support the recommendation that all first-degree blood relatives of anyone diagnosed with celiac disease should also be tested.

If they test negative, screening should be repeated every three years for adults or sooner if they have symptoms. High-risk children should be screened yearly until they reach puberty to reduce the risk that their growth is negatively affected by potentially asymptomatic celiac disease.

Second-degree blood relatives are also at an elevated risk of celiac disease compared to the general population. Regular testing and monitoring of symptoms would be wise.

I’m not a sensitive celiac so a little gluten is ok… right?

It is possible that some people with silent celiac disease do in fact have very subtle symptoms. Alternately, they may have ones that they don’t associate with celiac disease.

Because of this, some people describe themselves as being, “not a sensitive celiac.” This can make them tempted to occasionally “cheat” on their gluten free diet. They may also not be as careful about cross contamination.

In reality, there is no such thing as a being “only a little sensitive to gluten” when it comes to celiac disease. Even if you do not feel the effects of gluten, it still causes damage to your body.

Undiagnosed or poorly managed celiac disease results in more sick days, the development of new health problems, and a greater likelihood of hospitalization and premature death. This costs patients money and creates a huge burden on our healthcare system.

Many people don’t discover the full extent to which celiac disease was affecting their life until after gluten is removed and their symptoms resolve.

The effects of untreated celiac disease may not be obvious.

Not all damage from celiac disease is obvious from the outside. Much of the internal damage may not be seen or initially felt.

For example, untreated celiac disease carries double the risk of developing coronary artery disease. In the early development of this disease, as plaque slowly builds up in your arteries, you likely will not notice any symptoms. It is not until the later stages, when blood flow is greatly decreased, that symptoms present.

Once you are experiencing chest pain (angina), shortness of breath, or other coronary artery disease signs, you are already at a high risk of a potentially fatal heart attack.

Coronary artery disease (CAD) is the leading cause of death worldwide in both men and women. CAD is also called coronary heart disease (CHD) or ischemic heart disease. For some people the first sign of CAD/CHD is a heart attack.

Even after a heart attack, most doctors do not think to test for celiac disease.

Undiagnosed and/or untreated celiac disease can lead to serious, even fatal, long-term health problems.

Long-Term Health Conditions Caused by Untreated Celiac Disease:

• Iron deficiency anemia
• Early onset osteoporosis or osteopenia
• Infertility and miscarriage
• Lactose intolerance
• Vitamin and mineral deficiencies
• Central and peripheral nervous system disorders
• Pancreatic insufficiency (EPI)
• Intestinal lymphomas and other GI cancers (malignancies)
• Coronary artery disease (CAD)
• Gall bladder malfunction
• Neurological manifestations, including ataxia, epileptic seizures, dementia, migraine, neuropathy, myopathy, and multifocal leukoencephalopathy
• Other autoimmune disorders

Frustratingly, general awareness of celiac disease is very poor in the US medical community. 

Getting an accurate diagnosis is often difficult. Persistent misconceptions about this autoimmune disease also discourage many people from seeking out testing.

As a result, an estimated 83% of American men, women, and children living with celiac disease remain undiagnosed or misdiagnosed.

This leaves over 2 million people suffering unnecessarily due to lack of diagnosis. Furthermore, a significant percentage of people diagnosed with celiac disease have not received the education and support needed to successfully follow a gluten free diet.

Diagnosing and treating celiac disease with a 100% gluten free diet as early as possible is a crucial prevention strategy for many health problems.

Talk to Layered Living about your testing options, if have questions about your results, or need help transitioning to a gluten free diet.

Citations

Anderson, J. (2020, October 20). What is Silent Celiac Disease? Retrieved April 18, 2021, from https://www.verywellhealth.com/asymptomatic-or-silent-celiac-disease-563125

CDC. (2019, December 09). Coronary Artery Disease (CAD). Retrieved April 18, 2021, from https://www.cdc.gov/heartdisease/coronary_ad.htm

Celiac Disease Foundation. (n.d.). What is Celiac Disease? Retrieved April 18, 2021, from https://celiac.org/about-celiac-disease/what-is-celiac-disease/

Mathias, T. (2019, September 23). ‘Silent’ celiac disease common in patients’ close relatives. Retrieved April 18, 2021, from https://www.reuters.com/article/us-health-celiac-relatives/silent-celiac-disease-common-in-patients-close-relatives-idUSKBN1W81RE

Mayo Clinic. (2020, June 05). Coronary artery disease. Retrieved April 18, 2021, from https://www.mayoclinic.org/diseases-conditions/coronary-artery-disease/symptoms-causes/syc-20350613

Disclaimer: I am not a doctor. This blog post is general information only and is not to be substituted for medical advice, diagnosis, or treatment.