Yes, men have celiac disease too. It was once thought that celiac disease was primarily found in white, middle-aged, wealthy women. It’s a fact that 60-70% of those diagnosed with celiac disease are women. Women are also more likely to have an autoimmune disease overall.
But this isn’t the true face of celiac disease - which is more racially-diverse, and found in both genders, in all ages (0-100!) and in all income levels. Men have celiac disease at a rate of 1:1.5 to women - and shouldn’t be discounted when it comes to digestive symptoms or any strange symptoms during their annual checkup!
Men and Health Care - Overcoming a Health Gap
We know that men tend to use health services, like visiting a doctor, less than women, according to CDC data. Men also receive significantly less of doctor’s time when they do visit a doctor, and they are provided with fewer and briefer explanations during their visit. Sadly, men can suffer in silence, preferring to deal with any health issues without any support. This can also be the case for those with undiagnosed celiac disease.
Symptoms of Celiac Disease
Celiac disease, also called celiac sprue, or coeliac disease outside of the US, is an autoimmune disease. Eating gluten triggers many symptoms - some even claim over 300 symptoms are due to gluten. Classic symptoms of celiac disease are digestive distress - like abdominal pain, gas, bloating, chronic diarrhea and malabsorption and weight loss due to digestive issues. But there are many symptoms that actually reflect living life with celiac disease. Additional symptoms include:
- Your body can no longer absorb nutrients, so celiac disease patients can expect nutritional deficiencies, including Vitamin D deficiency, iron deficiency anemia, B12 deficiency, calcium deficiency, zinc deficiency, and copper deficiency
- Bone density issues like osteopenia and osteoporosis, particularly in the forearm for men
- Skin issues like itchy skin rash, psoriasis, or Dermatitis Herpetiformis
- Joint pain
- Neurological issues like chronic fatigue, migraine, or peripheral neuropathy
- Mental issues such as anxiety, depression
- Other related autoimmune diseases like thyroid diseases (hypothyroid or hyperthyroid), Sjogren’s Syndrome, and Type 1 Diabetes.
- Some with celiac disease can have no symptoms at all - referred to as silent celiac disease.
Do Men have different symptoms of celiac disease?
Men can have similar symptoms as women, like those listed above.
But even similar issues may be handled differently by men. Reader Nora shared about her celiac disease-diagnosed husband, “Curiously, he had no other symptoms [of celiac disease] - or so we thought. In retrospect, when a man who was able to clear a room with his flatulence became odorless, we realized he did have a symptom. Who goes to the doctor complaining, “My farts stink?” All his life it was thought to be his ‘nature’” Farting or burping may seem like a joke, but actually be an underlying digestive symptom from eating gluten if you have undiagnosed celiac disease.
However, men - specifically - have unique symptoms and risk for their biological sex.
- Reproductive Issues, specific to male reproductive organs
- Short Stature
- Higher risk of developing some types of small bowel cancer
Female fertility is well known with women with undiagnosed celiac disease. Miscarriages, stillbirths, C-section delivery, missed periods or irregular periods, and early menopause are all side effects of undiagnosed celiac disease in women, according to Beyond Celiac. Fertility is decreased for women at least two years before a celiac disease diagnosis.
However, it’s important to note that gluten and undiagnosed and untreated celiac disease can impair male fertility too! Gluten affects male fertility in several ways:
- Gonadal dysfunction/hypogonadism
- Altered sperm motility
- Altered sperm morphology affecting semen quality
- Reduced sexual satisfaction, sexual activity and loss of libido
Infertility issues are typically due to inflammatory response, and/or hormonal levels that have been affected by undiagnosed celiac disease. It’s important to note that some issues may stem from nutrition absorption issues, including folate, vitamin A, vitamin E, zinc, and selenium. Nutritional deficiencies are found in both males and females diagnosed with celiac disease, and a referral should be given to a dietitian upon diagnosis.
A 1975 study showed that gluten withdrawal in men with celiac disease and infertility improved both the concentration and motility of sperm. After diagnosis, it appears that normal fertility is restored in men.
It’s common to see failure to thrive and short stature in pediatric celiac disease cases. But adults with undiagnosed celiac disease can have growth delays as well. Men who have attained their final height before their celiac disease diagnosis have found to be shorter relative to the general population. It’s important to get diagnosed early to avoid delayed height development, especially for men.
Risk of Intestinal Lymphoma
A very small group of those diagnosed with celiac will not heal on a gluten-free diet. Up to about 1% of those with celiac are diagnosed with refractory celiac disease. This can lead to intestinal lymphoma. One study found that Refractory Celiac Disease type 2 was more common in women. However, men were more affected by enteropathy-associated T-cell lymphoma (EATL). This lymphoma has a poor prognosis.
Different Symptoms Same Testing
It’s important to note that there is no difference in testing methods for celiac disease in men or women. The celiac disease screening blood test and the test results do not differ between biological sexes in adults. The genetic test does not differ between biological sexes, or based on age, as genetics do not change over time. The upper endoscopy and biopsy, along with their results, apply equally to both sexes. While men and women may have unique symptoms for their biological sex, celiac disease testing remains the same.
Finding Hope in Male Celiac Disease Influencers
Thankfully, the overall outlook for celiac disease diagnosis is a positive one. With the help of non-profits like Beyond Celiac, celiac disease is being brought into important conversations on a national level.
Also, more men with celiac disease are becoming front and center on social media. Jordan Middlebrook from Canada was one of the first gluten-free male bloggers, under the moniker “King Gluten Free.” Unlike other male celiac diagnosis stories, his celiac disease diagnosis journey looked like many others. “My gender never really played a role in any of my celiac diseases journey.” He was a popular gluten-free blogger in 2014 and worked towards laying the foundation for males in the gluten-free influencer space. ”I was always proactive in my attempts to bury the stereotypes of being a diagnosed male [celiac].” While he doesn’t blog anymore about celiac disease, many other male gluten-free influencers are available to serve as advocates and voices for males who have been diagnosed with celiac disease. Bloggers and influencers like Gluten Dude and Phil Hates Gluten are popular on social media, and portray a strong, healthy lifestyle living without gluten if you have celiac disease.
Women and men have similar symptoms of celiac disease, including the classic symptoms of digestive distress. However, men are known to be less active in seeking proper medical advice and this can be harmful, as it delays the proper dietetic treatment. In addition, they do have unique celiac disease symptoms, including issues like sperm motility and morphology, and sexual dysfunction that may contribute to a lower fertility. Men also appear to have a slightly higher risk of intestinal lymphoma from refractory celiac disease. Any of these issues should be addressed with a gastroenterologist familiar with celiac disease. Regardless of biological sex, the only current prescription for celiac disease is a strict gluten-free diet.