What if licking a stamp could make you sick…
That might be an overstatement, but it gives some context to what it’s like to live every day with Celiac disease.
For most people gluten is just a protein in everyday foods, but for celiac sufferers gluten causes damage and discomfort. And while it’s most commonly found in wheat, rye and barley, gluten is also in products like vitamins, medicines and even the adhesive on stamps and envelopes.
Also known as celiac sprue, gluten enteropathy and gluten intolerance, celiac disease has likely been around since humans switched from a foraging diet of meat to a cultivated diet of grains, but it’s only been in the last 50 years that researchers have begun to understand the condition and how to manage it.
Celiac disease is a digestive disorder affecting the small intestine. Sufferers are unable to absorb the nutrients from foods they eat, resulting in malnutrition, decreased bone density and in some cases, cancer.
Damage occurs on the interior lining of the small intestine, which is made up of wrinkles called plicae and small finger-like protrusions called villi. The job of both the plicae and the villi is to increase the surface area of the intestinal wall and maximize the absorption of nutrients. When a Celiac sufferer eats foods containing gluten, their immune system responds by attacking the villi – damaging or even destroying them. Since the body itself causes the damage, celiac is classified as an autoimmune disease.
Celiac disease is genetic, passed through families. It can be present from birth, but it is often triggered by an event like surgery, pregnancy, childbirth, viral infection or even emotional stress. Outside of the genetics and triggering event, three factors that have been known to play a role in when and how celiac appears are the length of time the person was breastfed, the age they were when foods containing gluten were first eaten and the amount of gluten containing foods they are currently eating.
For some, the most difficult part of living with celiac disease is diagnosing it. People live symptom-free, while others may not know their symptoms are being caused by celiac. Crohn’s disease, irritable bowel syndrome and intestinal infections show similar symptoms, which can lead sufferers through a long period of trial and error treatments.
The most common symptoms are abdominal pain, bloating, chronic diarrhea, changes in weight and fatigue. All are centered in the digestive system, but celiac disease can also affect other areas of the body. Muscle cramps, joint pain, infertility, skin rashes, tooth enamel loss and seizures have also been noted in celiac patients and appear as a result of nutrient deficiencies.
Some celiac sufferers exhibit an itchy blistering skin rash, called Dermatitis Herpetiformis, that is an external manifestation of the same disease.
It is generally a combination of a few common symptoms and the appearance of an unusual one that triggers medical professionals to suspect celiac.
A blood test can begin to diagnose celiac by measuring auto-antibodies. Those with the disease have increased levels of these protective proteins, produced by the immune system in response to the body’s own molecules or tissues. Screening is recommended for immediate family members of a celiac sufferer, as 5 to 15 percent will also have the disease.
If a blood test indicates that celiac is likely, a small bowel biopsy is then performed. A tiny piece of tissue is removed from the small intestine using a tube inserted through the mouth and down through the digestive system. The sample is checked for damage to the intestinal lining.
For people with Dermatitis Herpetiformis, different tests are used, as not all of them will also have damaged villi. A biopsy of a skin lesion and tissue stain is completed.
These tests provide a definitive diagnosis that can put a patient on the road to recovery. Unfortunately, there is no cure for celiac. Living with the disease means learning how to manage it through diet.