Living with Celiac Disease: Signs, Symptoms and Treatment


What is celiac disease?
Celiac disease, also known as celiac sprue, it is a condition where the immune system responds abnormally to a protein called gluten. With persistent exposure, it can cause damage to the lining of the small intestine. The actual cause of celiac disease is unclear, but it seems to be a combination of genetics and environment.

Approximately 1 percent (1 out of 100) of Americans have celiac disease and that roughly 95 percent (300 million) remain undiagnosed. Celiac disease is seen primarily in whites of Northern European ancestry with the most common presentation between the ages of 10 and 40. Both genders are equally affected. If a first-degree relative is diagnosed, the risk of all other family members also having the disease can be anywhere from 10 percent to 40 percent.

What are the signs and symptoms of celiac disease?

Classic symptoms of celiac disease include:
• Abdominal pain
• Bloating
• Diarrhea or constipation
• Fatigue
• Weight loss (or failure to thrive in children)

Other symptoms include but are not limited to:
• Migraine headaches
• Joint pain
• Skin rash
• Depression
• Mouth sores
• Osteopenia or osteoporosis (bone health)
• Tooth defects
• Infertility, miscarriages or pregnancy complications

Celiac patients can also be asymptomatic, which means that they may have no obvious symptoms of celiac disease.

How is celiac disease diagnosed?
There are several different tests used to check for celiac disease. These include blood work and genetic testing. However, the “gold standard” for diagnosis is an upper endoscopy. In this procedure, biopsies (microscopic pieces of tissue) are taken from the first portion of the small intestine. These biopsies are then studied to either confirm or rule out the tissue changes characteristic of celiac disease.

When a celiac patient stops consuming gluten, the tissue in the small intestine heals and testing levels return back to normal. For an accurate diagnosis, it is very important that the patient sees their doctor to be tested before cutting gluten out of their diet.

What is the difference between celiac disease and gluten intolerance?
It is important to know whether a patient’s symptoms are related to an intolerance to gluten or due to true celiac disease. These problems may have similar symptoms, but only celiac disease will damage the tissue of the small intestine and lead to long-term effects and complications. These two problems can only be differentiated with small intestinal biopsies. Both will improve if the patient stops consuming gluten.

If someone has true celiac disease and continues to eat gluten, long term-effects may include vitamin and nutrient deficiencies (A, D, E, B12, copper, zinc, folic acid), iron deficiency anemia, bone loss and an increased risk of certain types of gastrointestinal cancer and lymphoma (cancer in the intestinal lymph system).

Additional conditions that are more common to those with celiac disease include dermatitis herpetiformis (rash), type I diabetes, liver disease, Down syndrome, thyroid disease, acid reflux, inflammatory bowel disease, reproductive issues, ADD/ADHD and nervous system disorders. In order to prevent these conditions, it is extremely important for people with celiac disease to avoid all forms of gluten.

What is gluten?
The treatment for celiac disease is a strict and complete avoidance of gluten. Gluten is a protein particle found in wheat, barley, rye, related grains and wheat additives. Wheat additives are the most common additive in American food products and can hide in a lot of food products that we consume as a society. This makes it very important for those with celiac disease to read all food labels closely.

Foods containing gluten include:
• Flour
• Breads
• Crackers
• Muffins
• Pasta
• Cereals
• Baking mixes
• Sauces, spices, condiments and salad dressings
• Some medications and vitamin supplements

Gluten-free foods include:
• Rice
• Corn
• Potatoes
• Quinoa, millet, buckwheat and soybeans
• Milk, cheese and other dairy products
• Fruits and vegetables
• Meat and eggs

Foods labeled “gluten free” are acceptable. The FDA requires anything with the label “gluten free” to have less than 20 parts per million (ppm) of gluten. Gluten-free menus are also becoming safer over time as there is an increasing interest in serving celiac patients. Culinary arts programs and schools have focused on educating their students and chefs on proper ways to handle, prepare and serve gluten-free meals to properly avoid cross-contamination. Accessibility to gluten-free options has dramatically increased over time and is expected to continue increasing in the future. Varieties of gluten-free substitutes are available at supermarkets, health food stores and online.

After diagnosis and eliminating gluten from their diets completely, celiac patients should expect symptom relief within several days to a few weeks. However, it can take up to six months for intestinal healing in children and up to two years in adults. Patients are encouraged to meet with a dietitian after diagnosis to discuss diet options and nutritional management for the future.

When is it time to see your healthcare provider?
You are encouraged to see your healthcare provider if you have experienced several weeks of gastrointestinal symptoms as mentioned above, have brown or yellow teeth, find strange rashes on your skin or have a first-degree relative (parent, sibling or child) diagnosed with celiac disease. Parents are encouraged to take children who display behavioral symptoms of celiac disease, are failing to thrive or are experiencing delayed puberty to their healthcare providers.

If you or your children have any of these symptoms or if you have any additional questions or concerns, please contact our office or your primary care physician. We would be happy to get you back to your normal, healthy life.