Most people think celiac disease is all about avoiding gluten. But what many don’t realize is just how hereditary this condition is—and how often it goes undiagnosed within families.
A Hidden Condition with a Strong Genetic Link
Celiac disease is an autoimmune disorder triggered by gluten, a protein found in wheat, rye, and barley. But behind this immune response lies a clear genetic predisposition. Over 90% of patients with celiac carry the HLA-DQ2 or HLA-DQ8 genes—a necessary but not sufficient factor for the disease to develop.
If a close family member has celiac, your odds increase dramatically. First-degree relatives (parents, siblings, children) face a 1 in 10 or 5%–15% chance of developing it. Compare that to roughly 1% in the general population.
🔬 Mayo Clinic researchers found1 that when first-degree relatives of celiac patients were screened, 44% were diagnosed with the disease—despite 94% of them having no classic symptoms.
This means nearly half of relatives tested had celiac and didn’t even know it.
Why It’s Often Missed for Years
Celiac can be asymptomatic—or show up with non-digestive issues like fatigue, joint pain, or skin rashes. Because of this, it’s frequently misdiagnosed or ignored.
⏳ The average time to diagnosis is 6–10 years, during which time gluten continues to cause intestinal damage and inflammation.
🇺🇸 In the U.S., 83% of people with celiac are undiagnosed or misdiagnosed. That’s millions of people suffering from something they don’t know they have.
High-Risk Groups and Overlapping Conditions
Certain health conditions put people at greater risk of developing celiac:
- Type 1 diabetes (2.4%–20%)
- Autoimmune thyroid disease
- Down syndrome
- Unexplained infertility
- Liver and skin conditions like dermatitis herpetiformis
In the Middle East and North Africa (MENA) region, celiac is underdiagnosed—but data2 shows it’s present:
- 🇪🇬 Egypt: 1.4% in the general population, 6.4% among high-risk groups (e.g. type 1 diabetes)
- 🇱🇾 Libya: 0.8% in general population
- 🇸🇦 Saudi Arabia: 1.5% general population, 10.3%–16.4% among type 1 diabetics
- 🇸🇩 Sudan: 0.8% general population
- 🇱🇧 Lebanon: 0.6% among type 1 diabetics
- 🇹🇳 Tunisia: 0.6%–5.3% among high-risk groups (e.g. diabetics)
Healthcare access, awareness, and misattribution to IBS or lactose intolerance may contribute to underdiagnosis.
What You Can Do If It Runs in Your Family
- Ask for a blood test – specifically the tTG-IgA test, while eating gluten.
- Follow up with a biopsy, if bloodwork is positive.
- Don’t wait for symptoms—you might not have any.
- Test all first-degree relatives—especially if you’re the one already diagnosed.
Testing is simple. The consequences of not testing could be long-term damage.
Final Thoughts
Celiac disease does, in fact, run in the family—and it often runs silent. Whether or not you feel sick, if a loved one has it, get screened. You may just catch something that’s been lurking undetected for years.
Footnotes and Further Reading:
- Mayo Clinic Study on Family Screening ↩︎
- Study: The Epidemiology of Celiac Disease in the General Population and High-Risk Groups in Arab Countries: A Systematic Review ↩︎
