Misconceptions abound in the autoimmune disease world, and celiac disease has more than its fair share! Some of the questions celiac sufferers get:
“Is gluten sugar?”
“One piece of bread won’t hurt you, right?”
“I mean, what would actually happen if you ate gluten?”
“Do you want the gluten-friendly menu?”
When misinformation abounds, patients can feel frustrated and misunderstood. One of our goals at Autoimmune Registry is to provide clear answers to questions to reduce the confusion surrounding autoimmune diseases like celiac disease.
Celiac disease, sometimes spelled “coeliac”, is also known as celiac sprue, non-tropical sprue, sprue, and gluten enteropathy, is a malfunction of the immune system that only happens when a person eats gluten. When gluten is traveling through the intestines, it causes the immune system to attack the “villi” – the microscopic “fingers” of the intestines that absorb food. Over time, that attack can cause permanent damage to the intestines and a person can starve. Celiac disease is not the same as a gluten allergy, gluten intolerance, or gluten sensitivity, though a patient may be diagnosed with all 4 conditions before a correct diagnosis of celiac disease is made with a biopsy.
Celiac disease symptoms can range from stomach upset and constipation to diarrhea to vomiting. Without proper care, celiac sufferers can experience fatigue, migraines, joint pain, infertility, osteoporosis, anxiety, and depression. Children with undiagnosed celiac disease can end up with short stature. Some patients feel no symptoms at all initially — but the damage is still happening internally.
There is evidence that only people with certain genes get celiac disease, but not everyone with celiac has those genes, and only a small number of people with those genes actually gets celiac disease.
There are several types of celiac disease: celiac disease, non-responsive celiac disease (NRCD) and refractory celiac, the most serious and severe of these three types. All forms of celiac disease have the potential to be serious and life-altering.
The only way to be sure if you have celiac diagnosis is to have a biopsy done by a doctor. There are also several blood tests that look for certain elevated antibodies. Celiac affects 1 in 100 people worldwide. About 1% of the United States’ population has celiac. For many patients, a correct diagnosis of celiac could take 6-10 years.
There are no medications specifically for celiac disease but there are medications to manage some of the symptoms. The only guaranteed way to manage celiac disease is to follow a strict, 100% gluten-free diet. That means eliminating all food that normally contains gluten, like most bread and cereal, as well as any foods that might have come into contact with gluten or that you might not expect to contain gluten, like medications, makeup, bath products, and more. Gluten can also be hidden in dyes, additives, preservatives, and both natural and artificial flavorings. Even soy sauce, licorice, and gummy bears may contain gluten.
For patients with NRCD or refractory celiac, the gluten-free diet is not completely effective – the attack on the villi continues even without eating gluten. These forms of celiac disease are more damaging than “regular” celiac disease.
Researchers are working hard to find better ways to treat all forms of celiac disease.
If you’re one of the 1% of Americans with celiac, you’re not alone. There are some great organizations, bloggers, and patient advocacy groups to help you along your journey. If you have celiac, you should see a gastroenterologist and a professional nutritionist or dietician, and also be sure to check out Beyond Celiac and the Celiac Disease Foundation.
If you live with celiac, we would love to hear your story. Feel free to email firstname.lastname@example.org if you wish to contribute a guest blog about life with celiac disease.
In the meantime check out our celiac fact sheet, here.