Celiac disease is an autoimmune disorder triggered by the consumption of gluten, a protein found in wheat, barley, and rye. If left undiagnosed and untreated, it can lead to severe health complications. If you’ve been wondering why test at all, you are not alone. There can be multiple reasons why someone might question the need to get tested for celiac disease, however, a proper celiac disease diagnosis can be immensely beneficial for both you and your loved ones. Consider these 8 Reasons to Get Tested for Celiac Disease.

Reasons Why People Hesitate to get Tested for Celiac Disease

Before discussing the reasons why someone should get tested for celiac disease, it’s important to address reasons why someone might be indecisive on whether or not to get tested for celiac disease.

Here are some common factors that may contribute to the hesitation to get tested for celiac disease:

Lack of Awareness or Knowledge

Many individuals may not be familiar with celiac disease or its symptoms. They may be unaware that their symptoms could be related to celiac disease or may not understand the potential long-term health consequences of untreated celiac disease. Without adequate knowledge, they may not recognize the importance of seeking a diagnosis.

Fear of a Positive Diagnosis

The fear of receiving a positive diagnosis of celiac disease can be a significant factor in hesitating to get tested. The prospect of having to adhere to a lifelong gluten-free diet, which can be challenging, may cause anxiety or fear of social exclusion. This fear can prevent individuals from seeking the necessary medical evaluation.

Perceived Inconvenience or Disruption to Lifestyle

Getting tested for celiac disease typically involves several steps, including blood tests, possible follow-up diagnostic procedures, and making significant dietary changes if diagnosed. Some individuals may perceive these steps as inconvenient, time-consuming, or disruptive to their lifestyle, leading to hesitation in seeking a diagnosis.

Prior Negative Testing or Misdiagnosis

If someone has previously undergone testing for celiac disease and received negative results or has been misdiagnosed, they may develop skepticism about the need for further testing. This skepticism can create doubts about the accuracy of testing or the relevance of celiac disease as a potential cause of their symptoms.

Self-Diagnosis

In some cases, individuals may attempt to self-diagnose or rely on informal information sources without seeking proper medical advice. They may experiment with dietary changes or alternative treatments and assume that they have identified the cause of their symptoms without a formal diagnosis. Additionally, misdiagnosis by healthcare professionals can also lead to skepticism regarding the need for further testing.

Financial Concerns

The cost associated with medical testing and potential follow-up care can also be a factor in someone’s hesitation. They may worry about the financial burden of testing, consultations, and ongoing management if a positive diagnosis is received. Lack of insurance coverage or limited access to healthcare resources can amplify these concerns.

Denial or Minimization of Symptoms

Some individuals may downplay or dismiss their symptoms, believing they are insignificant or unrelated to a specific medical condition. They may attribute their symptoms to other factors, stress, or aging, which can lead to a reluctance to pursue further evaluation.

It’s important to note that while these considerations might influence someone’s perspective on getting tested for celiac disease, it is always advisable to consult with a healthcare professional for an accurate diagnosis and appropriate medical guidance. Early detection and proper management of celiac disease can help prevent long-term complications and improve overall health and well-being.

8 Reasons to get Tested for Celiac Disease

Early detection and implementation of a gluten-free lifestyle can lead to not only significant improvements in one’s health and overall well-being, but can also result in profound effects on both the social dynamics and legal aspects of an individual’s life.

Here are some compelling reasons to consider getting tested for celiac disease:

1. Celiac Disease is Covered by the ADA

Celiac disease is considered to be a disability that falls under the protections of the Americans with Disabilities Act (ADA). The ADA allows for certain protections against discrimination in schools, the workplace, and public accommodations in other federally-funded programs such as HUD funded housing, programs, and activities for Americans with disabilities.

Employers, for instance, may be required to provide reasonable accommodations to employees with celiac disease, such as adjustments to work schedules or access to gluten-free meals in the workplace.

2. Helps Ensure Proper Care in the Future

Diagnosis helps ensure you’ll receive proper care by medical professionals in the future. Having a documented diagnosis provides healthcare professionals with documented directives to provide you with gluten free prescriptions by the pharmacy and gluten free food by the hospital, nursing home, or rehabilitation facility if or when you are admitted.

Additionally, a celiac disease diagnosis often opens doors to specialized medical care and resources. It allows individuals to access the expertise of healthcare professionals knowledgeable about celiac disease, including dietitians, nutritionists, and support groups. This specialized care further validates the diagnosis and provides individuals with the necessary tools for managing their condition effectively.

3. Helps When Assessing Risk Factors

Diagnosis helps you, your child, and her doctors by having existing medical conditions recorded so they are aware when assessing risk factors for or diagnosing medical conditions associated with celiac disease, including type 1 diabetes, thyroid disease, dermatitis herpetiformis, neurological disorders, cardiovascular disease, additional autoimmune disease, cancers, and other conditions.

There are now over 350+ documented symptoms and conditions associated with celiac disease. A proper diagnosis of celiac disease prompts healthcare professionals to assess and monitor individuals for these associated conditions. This comprehensive evaluation helps identify potential comorbidities and manage them appropriately, reducing the risk of complications. If you know your risk factor for those conditions, you and your doctor will be better able to catch problems and treat them early if or when they arise.

4. Helps Children Stay Safe At School

According to Understood, diagnosis helps your child qualify for protections under Section 504 of the Rehabilitation Act of 1973. For children and students with celiac disease, a diagnosis can lead to accommodations in educational settings.

Having a Section 504 plan in place keeps your child safe at public or private school by designating accommodations that may include gluten-free meal options in schools, access to safe food storage areas, modified classroom activities or assignments, and flexibility in attendance due to medical appointments or treatment.

5. Gluten Sniffing Service Dog

ADA service dogs, also known as service animals under the Americans with Disabilities Act (ADA), are specially trained dogs that assist individuals with disabilities. The ADA is a U.S. federal law that prohibits discrimination against individuals with disabilities and ensures their equal access to public places, employment, and other areas of life.

Under the ADA, a service dog is defined as a dog that is individually trained to perform tasks or provide services that mitigate a person’s disability. The disability can be physical, sensory, psychiatric, intellectual, or other impairments that substantially limit one or more major life activities.

Gluten-detection dogs, also referred to as gluten-sniffing service dogs, are service animals that are trained to detect the presence of hidden gluten in an environment or more specifically, foods. Gluten-detection dogs help individuals avoid inadvertent ingestion of gluten containing or contaminated foods that might otherwise cause adverse effects on their health. Diagnosis with celiac disease, a medical condition protected by the ADA, allows one to use a gluten-detection service dog as needed and allowed by federal law.

6. Gives Your Diagnosis Credibility

Recognition in Social Interactions: A formal diagnosis can help others understand the severity and impact of celiac disease on an individual’s life. It can provide credibility when discussing dietary restrictions or requesting accommodations during social gatherings, dining out, or traveling. Others are more likely to respect and acknowledge the individual’s needs when there is a recognized diagnosis.

Diagnosis helps prevent friends and family from thinking or saying  “it’s all in your head” and feeding your child gluten or being less than careful while you are not around to protect them. It also helps you when in the care of others by preventing them from feeding you gluten if or when you ever became mentally or physically incapacitated.

7. Prevents Cheating on the Gluten Free Diet

Diagnosis will prevent you and your family from doubting your condition and tempting yourself (or your child) to “cheat” on what should be a medically prescribed strict gluten free diet. Such dietary indiscretions would increase the risk for additional autoimmune diseases, other medical conditions, and cancers. 

8. Celiac Disease is Hereditary

Identifying Genetic Predisposition: Celiac disease has a strong genetic component, and individuals with specific genetic markers, such as HLA-DQ2 or HLA-DQ8, have an increased risk of developing the condition. A proper diagnosis confirms the presence of celiac disease-related genetic markers, providing valuable information about the individual’s genetic predisposition and susceptibility to the disease. This knowledge can help assess the risk of developing celiac disease in family members or future generations.

Determining Familial Risk: Celiac disease is hereditary. Celiac disease has a higher prevalence among first-degree relatives of individuals with the condition. A diagnosis in one family member can alert others to the potential increased risk.

Family members can consider testing for celiac disease, even if they may not be currently experiencing symptoms. Early identification through proper diagnosis allows for timely management and can help prevent or minimize potential complications associated with undiagnosed celiac disease.

If you are properly diagnosed, then your relatives and children will know their risk factors and then they can be properly diagnosed early enough to prevent long term damage, unnecessary pain and suffering, and lower their risk of developing additional autoimmune diseases, other medical conditions and cancers.

Conclusion

It’s important to remember that celiac disease is a chronic condition that requires proper diagnosis and management to prevent long-term complications. If someone is experiencing symptoms or has risk factors associated with celiac disease, it is advisable to consult with a healthcare professional for an accurate diagnosis and appropriate medical guidance.

Early diagnosis and a gluten-free diet can help prevent long-term complications, improve your quality of life, and promote better overall health. If you suspect that you or a loved one may have celiac disease, consult with a healthcare professional to get appropriate testing and guidance. Then, to help you on your journey, seek encouragement and social support by joining a community dedicated to supporting those with celiac disease so that you can live your best life and be the best you.