Living With Celiac Disease

Celiac disease isn’t just a simple digestive problem – it’s an autoimmune disorder triggered by an immune reaction to gluten. As there’s currently no cure, being diagnosed with this disorder means living with it; however, lifestyle changes can help keep it in check. Read on to find out more about celiac disease and what it’s like to manage it. 

What Is Celiac Disease?

Celiac disease is a hereditary autoimmune disorder that can develop at any time after a person begins to eat food or take medications containing gluten. Celiac disease, though it is linked to food, is not the same thing as having a food allergy. “Celiac disease is not an allergy; it is an autoimmune disease. This means that the immune system mounts an exaggerated response to gluten that subsequently causes damage to our own tissue or mucosa,” explains Dr. Camille Sommer, a gastroenterologist at Galen Medical Group. If a person with the disease continues to ingest gluten – a protein found in wheat, barley, and rye – this immune response can cause damage to the small, finger-like projections (microvilli) that line the small intestine to allow nutrient absorption. “When the small intestine gets inflamed, these microvilli become flattened, thereby decreasing the body’s capacity to efficiently and effectively absorb important nutrients from food,” says Dr. Sommer.

Another thing to note is that gluten sensitivity and celiac disease are not synonymous. 

While the former can cause digestive and other physical symptoms of varying severity, it typically does not cause injury to the intestines like celiac disease, which can be confirmed in diagnosis via blood tests. Before restricting yourself to a gluten-free diet, it is important to speak with your care provider to confirm that it is safe and necessary for you to do so. According to Dr. Sean Rice of Erlanger Gastroenterology, “Many people have the misconception that a gluten-free diet is inherently healthier than a regular diet, but this is not true. Gluten-free diets can restrict essential food groups and can be expensive.”

Symptoms & Triggers

Unsurprisingly, many typical symptoms of celiac disease are digestive. This includes diarrhea, bloating, gas, abdominal pain, constipation, nausea, vomiting, and weight loss. However, it’s not uncommon for other physical symptoms to arise as well. “Some non-GI symptoms include skin rashes, dental enamel defects, tongue soreness/burning, and neurologic symptoms including depression, anxiety, headaches, and peripheral neuropathy,” Dr. Rice explains. “Other commonly associated findings, which may or may not have symptoms, include anemia, osteoporosis, and other vitamin deficiencies.” For children with celiac disease, such nutrient deficiencies can lead to stunted growth and development.

On the surface, triggers to avoid for those with celiac disease may seem straightforward: nothing that contains wheat, barley, or rye. However, far more foods – especially processed foods – contain these ingredients than many people realize. Below are examples of just some of the things that someone with celiac disease should avoid (unless the label says otherwise): 

  • Beers and ales
  • Breads
  • Cakes, candies, and pies
  • Cereals
  • Cookies and crackers
  • Croutons
  • Fries
  • Gravies or malts
  • Imitation meats and seafood
  • Pastas or matzo
  • Processed sausage and lunch meats 
  • Sauces and salad dressings
  • Seasoned foods or seasoning mixes
  • Soups
  • Sauced fruits or vegetables

Risk Factors & Complications

The exact cause of celiac disease is currently unknown, though it’s generally agreed upon that the disease is genetic and activated by the consumption of gluten. “Celiac disease occurs in genetically predisposed individuals and is very common. About one in 100 people in the United States have celiac disease,” says Dr. Rice. Celiac disease is, however, more common in some people than others, including people with family members who also have the disease; people with type 1 diabetes, Down syndrome, or Turner syndrome; people with thyroid autoimmune disease; people who have microscopic colitis; and people with Addison’s disease. 

Celiac disease can increase a person’s risk of other health conditions as well. The damage that celiac disease can cause to the intestines might also lead to lactose intolerance, but this intolerance can often be reversed if the intestine is healed. According to Dr. Sommer, “More severe, albeit rare, complications of untreated celiac disease include lymphoma and cancer of the small intestine and perhaps esophagus. Because of these complications, it is important that your physician monitors your vitamin and mineral levels regularly and that you have routine bone (DEXA) scans.”

Getting a Diagnosis

Many people are suffering from celiac disease without realizing it. The disease is often mistaken for food sensitivity or irritable bowel syndrome. Fortunately, if celiac disease is suspected, the diagnosis is relatively straightforward. Two different blood tests are used as diagnostics: serology testing, which will identify antibodies that indicate an immune response to gluten, and genetic testing, which rules out celiac disease by testing for certain antigens. If the results of these blood tests are indicative of celiac disease, your doctor is likely to order an endoscopy to check for damage to the small intestine that celiac disease would inflict. During this time, a tissue sample might also be taken for examination. 

Managing Celiac Disease

At this time, there are unfortunately no procedures or medications available to treat or cure celiac disease. “Celiac disease is treated by avoiding all foods that contain gluten because it is gluten that precipitates the inflammation in the gut,” says Dr. Sommer. “When gluten is removed from the diet, inflammation is subsequently improved, and the intestine can heal.” This means not only avoiding trigger foods that clearly contain gluten, but also actively reading the labels of any food or medication purchases, being conscious of what you eat at restaurants, and making those around you aware of your dietary needs. “It is very easy to have ’cross-contamination’ of otherwise gluten-free foods. This can occur at restaurants or at home when cooking utensils used for gluten-containing foods are also used to cook for gluten-free individuals,” says Dr. Rice. If newly diagnosed patients are struggling with the diet, a registered dietician can offer guidance. 

Those with celiac disease may also need vitamin supplements at certain points in order to counteract any nutritional deficiencies resulting from the strict diet or the disease itself. It’s also important to stay on top of follow-up appointments with your doctor in order to ensure that the healing process in your intestines is progressing as it should.

Picture of Sean Rice, MD

Sean Rice, MD

Gastroenterologist, Erlanger Gastroenterology

Picture of Camille Sommer, MD

Camille Sommer, MD

Gastroenterologist, Galen Medical Group

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