Skip to content

Is it worth getting tested for gluten intolerance?

4 min read

With up to 80% of people with celiac disease remaining undiagnosed worldwide, many people with symptoms are uncertain about their next steps. For those experiencing digestive or other unexplained issues after eating gluten, the question 'is it worth getting tested for gluten intolerance?' is a critical one for long-term health and wellness.

Quick Summary

Testing for a gluten-related disorder provides a clear diagnosis, differentiating celiac disease from non-celiac gluten sensitivity. This is essential for preventing serious health complications, ensuring proper dietary adherence, and guiding treatment. It also enables genetic testing for at-risk family members and clarifies symptoms to improve quality of life.

Key Points

  • Celiac is an Autoimmune Disease: Unlike NCGS, celiac causes permanent intestinal damage and requires a lifelong, strict gluten-free diet for management and health preservation.

  • Testing Requires Eating Gluten: To get an accurate celiac disease diagnosis via blood tests, you must be consuming gluten. This is known as a "gluten challenge" and can cause temporary symptoms.

  • NCGS is a Diagnosis of Exclusion: There is no specific test for Non-Celiac Gluten Sensitivity; it is diagnosed by ruling out celiac and wheat allergy, followed by a supervised elimination and reintroduction diet.

  • Self-Diagnosing Poses Risks: Starting a gluten-free diet without testing can mask a serious underlying condition like celiac disease, increase the risk of complications, and lead to nutritional deficiencies.

  • Testing Protects Your Long-Term Health: A formal celiac diagnosis allows for proper medical monitoring, family screening, and access to necessary resources and benefits, ultimately protecting against serious long-term complications.

In This Article

The Crucial Distinction: Celiac Disease vs. Non-Celiac Gluten Sensitivity

Many individuals mistake gluten sensitivity for celiac disease, but the two are fundamentally different conditions with distinct diagnostic paths. Celiac disease is an autoimmune disorder where consuming gluten triggers an immune response that damages the small intestine lining, which can lead to nutrient malabsorption and other health issues. Non-celiac gluten sensitivity (NCGS), on the other hand, causes similar symptoms but does not involve an autoimmune reaction or intestinal damage. A wheat allergy is a third, separate condition involving an immediate allergic immune response to wheat proteins. Determining the correct condition is the primary reason to pursue testing.

The Health Risks of Self-Diagnosis

Starting a gluten-free diet without proper testing is a risky approach. A gluten-free diet will cause the intestines to heal, making accurate celiac disease testing impossible without an uncomfortable "gluten challenge" to reintroduce it. More importantly, it can mask a serious, undiagnosed condition. Left untreated, celiac disease can lead to severe complications, including osteoporosis, iron-deficiency anemia, infertility, and certain intestinal cancers. Testing is the only way to rule out or confirm these serious concerns.

The Testing Process: A Step-by-Step Overview

Properly identifying a gluten-related disorder requires a structured approach under medical supervision.

Celiac Disease Testing

  • Blood Tests: The first step is typically a blood test to screen for specific antibodies, such as the tissue transglutaminase (tTG-IgA) test. It is crucial to be on a gluten-containing diet for several weeks before the test to ensure an accurate result. A total serum IgA test may also be ordered to check for IgA deficiency, which can cause a false-negative result.
  • Endoscopy and Biopsy: If the blood test is positive, a gastroenterologist will likely perform an upper endoscopy. This procedure involves inserting a thin tube with a camera down the throat to examine the small intestine and collect a tissue sample (biopsy) to check for damage to the villi.
  • Genetic Testing: A genetic test for the HLA-DQ2 and HLA-DQ8 genes can be used to rule out celiac disease. Since nearly everyone with celiac disease has one of these genes, a negative test makes celiac highly unlikely.

Non-Celiac Gluten Sensitivity Diagnosis

There is currently no single biomarker or test for NCGS. Diagnosis is made by a process of exclusion:

  • First, medical professionals rule out celiac disease and wheat allergy through the appropriate blood and allergy tests.
  • Next, a supervised elimination diet is conducted. Gluten is removed from the diet for a few weeks to see if symptoms improve.
  • Finally, gluten is carefully reintroduced to see if symptoms return, confirming NCGS.

Pros and Cons of Formal Gluten Testing

Pros of Testing Cons of Testing
Confirms celiac disease, which is necessary for proper treatment and long-term health management. Requires eating gluten for several weeks for accurate celiac blood tests, which can be uncomfortable for those with symptoms.
Provides a clear diagnosis, ending uncertainty and avoiding misattribution of symptoms to other conditions. At-home tests for gluten sensitivity are often unreliable and not a substitute for medical diagnosis.
Reduces the risk of long-term health complications associated with untreated celiac disease, like osteoporosis and cancer. May not be fully covered by insurance, and subsequent testing like endoscopies add to cost.
Allows for testing of first-degree relatives, informing them of their risk of developing celiac disease. Diagnosis of NCGS relies on a process of elimination and observation, not a single definitive test.
Provides access to support, including registered dietitians and other resources for managing the condition. Can be a lengthy process involving multiple tests and consultations with specialists.

What Happens if You Don’t Get Tested?

Without a formal diagnosis, several negative outcomes can occur. You might adopt an unnecessary gluten-free diet, which is not inherently healthier and can lead to nutritional deficiencies if not properly managed. More dangerously, you may be living with undiagnosed celiac disease, suffering from ongoing intestinal damage and increasing your risk for related conditions. Furthermore, a self-imposed diet can complicate future testing and create greater confusion about the true cause of your symptoms. A formal diagnosis ensures you receive the correct medical monitoring and management plan.

Conclusion: The Path to Clarity

For anyone experiencing symptoms, getting tested for gluten intolerance is undeniably worthwhile. While a positive test for celiac disease requires a lifelong dietary commitment, the diagnosis is invaluable for preventing serious health consequences and providing a clear path forward. If celiac is ruled out, a supervised elimination diet can confirm or deny non-celiac gluten sensitivity, leading to a tailored and effective management strategy. The discomfort of the testing process is a small price to pay for the clarity and long-term health benefits of a correct diagnosis. Consult a healthcare professional to start the process and end the uncertainty.

For more information on celiac disease and testing, consider visiting the Celiac Disease Foundation's website: https://celiac.org/.

Additional Gluten-Related Disorders

  • Wheat Allergy: This is an immediate, IgE-mediated allergic reaction to wheat proteins, not just gluten, that can range from hives and swelling to anaphylaxis.
  • Other Food Sensitivities: Symptoms often attributed to gluten may actually be caused by other food intolerances, such as to FODMAPs (fermentable oligo-, di-, mono-saccharides and polyols) found in wheat. Testing helps isolate the true cause.
  • Diagnostic Overlap: Conditions like Irritable Bowel Syndrome (IBS) share many symptoms with gluten-related disorders, making professional testing essential to avoid misdiagnosis.

Taking Control of Your Health

Understanding the distinction between these conditions and pursuing proper medical testing is the most responsible course of action for anyone suspecting a gluten issue. It provides a definitive answer, guides effective treatment, and protects long-term health. Avoid the pitfalls of guesswork and get tested to find the real cause of your symptoms.

Frequently Asked Questions

To get an accurate blood test for celiac disease, you must be consuming gluten for several weeks. If you have already removed it from your diet, your doctor may recommend a "gluten challenge" to reintroduce it for a period before testing. Genetic testing, however, can be performed while on a gluten-free diet.

The accuracy of many at-home tests for gluten sensitivity is low or unproven and should not be used as a substitute for a medical diagnosis. They cannot distinguish between celiac disease and other conditions and their cost may not be covered by insurance.

The first and most important step is to see a doctor or gastroenterologist. Do not remove gluten from your diet before testing. Your doctor will likely start with a blood test for celiac disease antibodies.

Testing for celiac disease involves blood tests for specific antibodies and often an endoscopy with a biopsy to confirm intestinal damage. Non-celiac gluten sensitivity is diagnosed by ruling out celiac and a wheat allergy, then observing symptom changes during a supervised gluten elimination and reintroduction diet.

Left untreated, celiac disease can cause serious long-term complications, including osteoporosis, iron deficiency anemia, infertility, and an increased risk of certain types of cancer.

Yes, a formal diagnosis allows your doctor to refer you to a registered dietitian who can provide expert guidance on following a safe and nutritionally sound gluten-free diet. A diagnosis may also provide access to insurance coverage for follow-up care.

Going gluten-free without a medical diagnosis can complicate or invalidate future testing. It also doesn't provide the medical monitoring necessary to check for intestinal healing or potential nutritional deficiencies, which are vital for confirmed celiac patients.

For accurate testing, a gluten challenge typically requires consuming gluten for several weeks (often 4-8 weeks), though doctors should be consulted for specific timelines and amounts.

References

  1. 1
  2. 2
  3. 3
  4. 4
  5. 5

Medical Disclaimer

This content is for informational purposes only and should not replace professional medical advice.