97% of people living with celiac disease, an autoimmune disorder that damages the lining of the small intestine, don’t even know they have it according to the The National Foundation for Celiac Awareness (NFCA). Celiac disease affects an estimated 3 million Americans and, if left untreated, can have serious long-term consequences including anemia, infertility, osteoporosis, weight loss, hair loss, and delayed growth in children. “It is also associated with a greater prevalence of other autoimmune disorders, such as Type 1 diabetes, rheumatoid arthritis and thyroid and liver diseases,” says Rachel Begun, MS, a registered dietician and author of The Gluten Free RD.
Though treatment of celiac disease is relatively simple (adopting a lifelong gluten-free diet), it affects every person differently, making diagnosis sometimes difficult. Mary K Sharrett, MS, a clinical dietician with Nationwide Children’s Hospital in Columbus, OH says “40-50% of people with celiac disease do not have any gastrointestinal symptoms,” which may contribute to the high rate of undiagnosed cases.
Celiac disease is a tricky condition, with the power to manifest itself in hundreds of ways. This smorgasbord of symptoms can lead to delayed diagnoses; many with celiac disease struggled for years with their symptoms before being diagnosed. Here at iTriage, we believe that the more you know, the better health care decisions you will make. Here is a list of common celiac symptoms from the NFCA:
- Stomachaches: One of the most common symptoms of celiac disease is digestive complications. This can range from stomach aches after eating to frequent diarrhea and constipation.
- Headaches: Many people with undiagnosed celiac suffer from frequent and incredibly painful migraines and cluster headaches.
- Skin Rashes: A common symptom of celiac disease is a condition called dermatitis herpetiformis, a specific type of skin rash. Skin conditions can also include severe acne and other types of unexplained rashes.
- Pregnancy and Fertility Issues: One of the most devastating symptoms of celiac disease for women is the loss of a child in utero. Developing babies cannot absorb nutrients if their mother isn’t and thus often do not survive to full term.
- Child Development: Children with undiagnosed celiac are often smaller, weaker and more poorly developed than other children their age.
- Osteoporosis: Because celiac disease makes it difficult to absorb nutrients from food, important nutrients like calcium and vitamin D are not absorbed into the body, which leads to weak bones.
- Fatigue: People with undiagnosed celiac often report being constantly exhausted and fatigued. Many say they feel weak and like they have no energy.
- No Symptoms: Some people with celiac disease have no symptoms at all, making it even harder to detect the condition.
Sharrett cautions that people who suspect they have celiac disease should not start a gluten-free diet before they get a screening: “You have to be eating gluten for the diagnostic test to show that you have celiac disease,” she says. “You would have to reintroduce gluten to the diet and sometimes it can take a long time for the damage to reoccur.”
If you have celiac disease, what did you go through before your diagnosis? Let us know on our Facebook page.
For more information on celiac disease, visit the National Foundation for Celiac Awareness website.