Celiac disease affects one in 133 Americans (about 2 million). And, an estimated 95 percent of those people are undiagnosed. People with celiac can't tolerate gluten, a protein found in wheat, barley and rye which includes most grain, pasta, cereal and many processed foods. When consumed—even in small amounts—it triggers a response that damages the lining of the small intestines.
In addition, some people experience non-celiac gluten sensitivity-sharing similar symptoms of celiac but without damage to their intestines. That's part of the reason the gluten-free (GF) diet fad is so popular right now. Many people feel better without wheat in their diet.
The problem? "People who follow a GF diet without being properly diagnosed as having celiac disease are putting themselves at risk by not treating a condition that's there," says Hana Feeney, MS, RD, nutrition counselor, in private practice and at campus health service at the University of Arizona. Her advice: If you experiment with a GF diet for any reason and you notice any improvement in symptoms, you should consider the possibility of celiac and explore that so you can protect yourself from other chronic diseases such as type 1 diabetes and several autoimmune diseases.
Symptoms of Celiac Disease
There are approximately 200 different known symptoms of celiac disease, according to the University of Chicago Celiac Disease Center. The more common symptoms may include one or more of the following:
- Frequent abdominal bloating and pain
- Chronic diarrhea or constipation
- Vomiting
- Weight loss
- Pale, foul-smelling stool
- Iron-deficiency anemia that does not respond to iron therapy
- Fatigue
- Pain in the joints
- Tingling numbness in the legs
- Pale sores in the mouth
- Dermatitis herpetiformis (an intense itching, bleeding skin rash)
- Tooth discoloration or loss of enamel
- Osteopenia (weak bones)
- Peripheral neuropathy (damage to the peripheral nervous system which affects sensory information)
- Anxiety or depression
Why Celiac Is Difficult to Diagnose
Sixty percent of high-risk people (those with family members who have celiac disease) have celiac without any symptoms of all. "You don't have to be on your deathbed with diarrhea, abdominal pain and malnutrition," says Feeney. "You can be functioning and have no complaints, but you have bone disease, or you have a difficult time conceiving or multiple miscarriages, or depression, or anxiety. You may have a related condition but you don't have the fatigue or the digestive problems commonly associated with celiac."
That's why it's important to be tested and screened for celiac before trying a GF diet. Says Feeney: "For some people seeing a doctor and getting a blood test before trying a GF diet seems like a crazy concept.'" But if you are trying a GF diet because you think it might make you feel better that's reason enough to be screened for celiac beforehand.
Once you start a GF diet, any improvement in your health if you have celiac is because your body is starting to heal. However, the longer you're on a GF diet the harder it is to make an accurate diagnosis.
A blood test can determine if antibodies are present indicating celiac however, false negatives occur about 10 to 15 percent of the time. During the early stages of the condition—when there is less damage to the intestines—the false negative rate is thought to be higher. An intestinal biopsy that picks up damage to the villi (which prevents nutrients from being properly absorbed) is used for a definitive diagnosis.
Starting the Diet
Starting the diet without being screened can cause a misdiagnosis since the antibodies in your blood will decrease to the point of normalcy in just three to six months. But if you feel better and your intestines are healing, what's the big deal? If you have celiac, eating gluten-free is the only course of treatment. But it's more involved than buying a GF-free pizza crust. You have to worry about vitamin deficiencies (iron, B12, vitamin D, magnesium, fiber, etc.); cross contamination in restaurants; and even gluten in beauty products.
"A GF diet is quite different from a celiac diet," says Feeney. "You'd still be at risk for osteoporosis, intestinal cancers, infertility, thyroid disease, and other conditions related to celiac if you went gluten-free but did not address gluten contamination at home, in restaurants, in food manufacturing, skin care products, supplements, and medications."
For optimal health, you need to follow a GF diet under the care of your health care provider, and a registered dietitian.
Hana Feeney, MS, RD, reviewed this article.
Sources:
Hana Feeney, MS, RD, nutrition counselor at the University of Arizona. http://nourishingresults.com/
The University of Chicago Celiac Disease Center. Learn about the symptoms of celiac disease. Web. 2013.
http://www.cureceliacdisease.org/living-with-celiac/guide/symptoms
