Undiagnosed Celiac Disease in Men

Why Celiac Disease Often Goes Undiagnosed in Men

by Kate Bourke, RDN, Clinical Advisor | NIMA

When most people picture someone with celiac disease, they often do not picture a man. That assumption may be part of the reason many men go years without a diagnosis. Celiac disease is common. It affects men more often than many people realize. Yet, men are still diagnosed less frequently and often later. The result is a diagnosis gap that researchers are beginning to understand more clearly. Here is what research shows and why it matters.

Men Have Celiac Disease More Often Than Many People Think

Celiac disease affects roughly 1% of the American population, or about 1 in every 133 Americans. It is one of the most common autoimmune conditions in the world, and yet as many as 83% of people who have it remain undiagnosed or misdiagnosed.

For a long time, celiac disease was considered primarily a women's condition. Women are still diagnosed more often. But the real picture is much closer than the diagnosis rates suggest. While as many as 70% of people diagnosed with celiac disease are women, more recent research shows that the actual ratio of men to women with the condition is closer to 1 to 1.5.  

Men have celiac disease. They are simply being identified less often. Part of the challenge is that many men do not recognize their symptoms as possible signs of celiac disease.

Why Men Often Go Undiagnosed

Part of the reason is behavioral. Men are generally less likely to visit their doctor and use health services than women, and men also tend to receive less of a doctor's time during a visit. Many men describe waiting years before seeking answers, often because the symptoms never felt dramatic enough to warrant a doctor's appointment. 

The other part is perception. Celiac disease simply is not on most people's radar when it comes to men's health. So when a man walks into a doctor's office with fatigue, bloating, or digestive issues, celiac disease may not make the differential diagnosis list at all.

The result is that many men spend years, sometimes decades, normalizing symptoms that have a name and a treatment. Many are not walking into a doctor’s office saying: "I think gluten is causing this."

Instead, symptoms often sound more like:

• "My stomach has always been weird."
• "I’m tired all the time."
• "I thought bloating was normal."
• "It’s probably stress."
• "I just have a sensitive stomach."

These are not dramatic symptoms. They are easy to adapt to. And when something feels normal for long enough, it stops feeling like something worth investigating.

What Celiac Disease Actually Is

Before going further, it helps to understand what is actually happening in the body.

Celiac disease is an autoimmune condition. That means it is not about willpower or sensitivity or preference. When someone with celiac disease eats gluten, a protein found in wheat, rye, and barley, their immune system treats it as a threat and attacks the lining of the small intestine. Over time, this damages the tiny projections in the intestine that absorb nutrients, and the effects reach far beyond digestion.

Over 200 different symptoms have been linked to celiac disease. With such variety in presentation, it is no wonder that many people receive misdiagnoses or no diagnosis at all. It is also possible for someone to test positive for celiac disease without experiencing any noticeable symptoms at all.

Common symptoms that show up across all people with celiac disease include:

• Chronic fatigue that does not improve with rest
• Digestive issues including bloating, diarrhea, and abdominal pain
• Iron deficiency anemia
• Brain fog and difficulty concentrating
• Bone and joint pain
• Vitamin and mineral deficiencies
• Persistent headaches or migraines
• Depression or anxiety
• Skin rashes
• Peripheral neuropathy, a tingling or numbness in the hands and feet

None of these are minor. And none of them are things anyone should have to simply live with.

Symptoms in Men Can Go Beyond Digestion

While the symptoms above affect everyone with celiac disease, there are several ways the condition can manifest that are particularly relevant to men and that are worth knowing.

Bone Health

One of the quieter long-term consequences of untreated celiac disease is bone loss. When the intestine is damaged, it cannot properly absorb calcium, Vitamin D, and magnesium, all of which are essential for maintaining bone density. Over time, this can lead to osteopenia or osteoporosis.

Because osteoporosis is so often associated with women, men rarely get screened for it early. By the time bone loss is discovered, years of unmanaged celiac disease may already have contributed to the damage. The encouraging news is that when celiac disease is properly treated, bone health often improves.

Reproductive Health

This is one of the less talked-about aspects of celiac disease in men, but the research is clear. Celiac disease symptoms that can be unique to men include gonadal dysfunction, altered sperm motility, reduced sexual satisfaction and libido, and altered sperm morphology including lower semen quality.

These effects are believed to be connected to chronic inflammation and nutritional deficiencies, particularly in zinc, selenium, and folate, all of which play a role in reproductive health. Some research has shown improvements in these areas after diagnosis and adherence to a strict gluten-free diet. This is another reason why an early diagnosis matters well beyond the gut.

Skin

Dermatitis herpetiformis, an intensely itchy and blistering skin condition caused by celiac disease, appears more frequently in men than in women. It typically shows up on the elbows, knees, and buttocks, and is frequently misdiagnosed as eczema or another skin condition. For some men, a persistent skin rash is actually the first sign that leads toward a celiac diagnosis, even when digestive symptoms were never severe. 

Growth and Stature

Short stature in adulthood is another symptom that has been associated specifically with men who had undiagnosed celiac disease during childhood. When celiac disease goes unidentified in growing children, nutrient malabsorption can affect development in ways that have lasting effects. This is one of many reasons that childhood diagnosis is so important. 

Cancer Risk

Men with untreated celiac disease also carry a higher risk of certain types of small bowel cancer. This is not meant to alarm anyone, but it is a serious long-term consideration that underscores why diagnosis and a strict gluten-free diet are not just about feeling better day to day. They are about long-term health protection. 

What Happens When Diagnosis Comes Late

The good news is that celiac disease is manageable. There is no medication required. The treatment is a strict, lifelong gluten-free diet. And when that diet is followed consistently, many people experience improvements that genuinely surprise them.

People commonly report changes in:

• energy levels 
• mental clarity 
• digestion 
• sleep 
• mood 
• and athletic performance. 

Many describe feeling like a different person within months of going gluten-free.

One of the most common things people say after diagnosis is some version of: "I had no idea how bad I felt until I started feeling better." That is not a cliche. It is an honest reflection of what happens when chronic, low-grade suffering becomes your baseline. You stop noticing it. You just think that's who you are.

It doesn't have to be.

What You Can Do

If any of this sounds familiar, the next step is a conversation with your doctor. A blood test is the starting point for celiac disease diagnosis. It is simple, widely available, and worth asking for if you have unexplained fatigue, digestive issues, brain fog, bone loss, skin problems, or fertility concerns.

One important note: do not remove gluten from your diet before being tested. The diagnostic blood test looks for specific antibodies that are only present when gluten is being consumed. If you eliminate gluten before testing, the results may not be accurate, and you could miss a diagnosis that explains years of symptoms. Eat normally until testing is complete, and talk to your doctor before making any changes.

If you have already been diagnosed and are managing your diet, NIMA can be a practical tool for the moments when certainty matters. Testing a sample of food before you eat takes about 3 minutes and gives you real information at 99% probability of detection down to 10ppm. For restaurant meals, travel, catered events, or any situation where you cannot fully verify what went into your food, that kind of confidence makes a real difference.

You should not have to guess. Know before you eat.

Sources: Schär, "The Differences in Celiac Disease Symptoms Between Men and Women" | Beyond Celiac, "Celiac Disease Facts and Figures" | WHO

NIMA supports informed decisions. It does not guarantee food safety or replace medical management. Always work with your healthcare provider to determine the right approach for your care.