Frequently Asked Questions about Celiac Disease

FAQ blocks symbolizing Frequently Asked QuestionsWhat Is Celiac Disease?

Celiac disease is a lifelong, genetic intolerance to certain proteins found in the grains wheat, barley and rye. When ingested by an individual with celiac disease, these proteins trigger an autoimmune inflammatory response in the small intestine, causing damage to the absorptive structures called villi. When villi are damaged, their ability to absorb nutrients (fat, carbohydrate, protein, vitamins and minerals) is greatly reduced, resulting in compromised nutritional status and increased risk for diseases of almost every organ system. In fact, the word “celiac” comes from the Greek word “Koiliakos,” which means “abdomen” or “hollow” and refers to the way an individual with celiac disease can eat but remain malnourished when gluten is present in the diet.

Although most experts agree that individuals with certain genes can get celiac disease at some point in their lives (see discussion about HLA DQ2 and DQ8 below), it is not yet understood what triggers the onset of the disease or when it actually happens. Some research suggests the following may have an effect: early introduction of gluten-containing foods to a baby’s diet, puberty, the stress of surgery, illness or pregnancy, or a stressful occurrence in one’s life. Presently, there is no cure for the 1 in 133 individuals who are believed to have celiac disease in the United States, and the only known treatment is lifelong adherence to a gluten free diet.

At the Kogan Celiac Center, we are committed to early diagnosis and a comprehensive, multidisciplinary approach to treating and managing this disease for our adult and pediatric patients.

What Is Dermatitis Herpetiformis?

This is an itchy, blistering skin condition that is associated with celiac disease. It is commonly found bilaterally on the buttocks, knees, elbows, face and scalp. Individuals with the diagnosis of dermatitis herpetiformis can also show similar damage to the small bowel and show positive response to the gluten free diet.

What Are Hla Dq2 and Dq8?

HLA (Human Leukocyte Antigen) is a genetic marker or “flag” that exists on the surface of each cell in our bodies. Its function is to help the immune system distinguish between “self” cells and “invader” cells. Individuals who have either HLA DQ2 or HLA DQ8 markers are at risk for developing celiac disease and the presence or absence of this genetic material can be useful information in diagnosing this disease.

What Are the Symptoms of Celiac Disease?

Symptoms of celiac disease may include any of the following: diarrhea, change in bowel habits, abdominal bloating, failure to thrive, delayed weight gain and/or growth retardation, skin rash, discolored teeth, depression, irritability, fatigue, anemia, missed menstrual periods or joint pain. Some conditions associated with untreated celiac disease are osteoporosis, Vitamin K deficiency, intestinal lymphoma, dental enamel defects, infertility and/or miscarriage and general malnutrition.

How Do You Get Tested for Celiac Disease?

Initially, a blood test is ordered to determine if antibodies against gluten are being produced. High levels of antibodies show increased immune reaction and a strong likelihood for celiac disease. This suspicion is confirmed by examining the villi via a small bowel biopsy - a short, minimally invasive procedure usually done on an out-patient basis.

What Are the Blood Tests I Should Get?

Your medical provider will run a blood test to check for the markers for celiac disease. If they come back positive then an endoscopy will be needed to confirm the diagnosis. It is important to not go on a gluten-free diet before a proper diagnosis is made.

Is Testing the Same for Dermatitis Herpetiformis?

No, a skin biopsy is used to diagnose this skin condition.

What Is the Difference Between Celiac Disease and Gluten Intolerance?

Celiac disease is characterized by an autoimmune reaction to gluten in genetically susceptible individuals that results in intestinal damage and malnutrition that can affect any organ system in the body. The only known treatment for celiac disease is a very strict, lifelong compliance with a gluten-free diet. Gluten intolerance, for the most part, results in gastrointestinal distress in individuals who consume gluten, without autoimmune or malabsorption results. It is not known yet if there is any genetic marker for this intolerance and, while treatment for this condition is also a gluten free diet, small amounts of gluten may be tolerated without causing damage to the small intestine.

If I Have Some of the Symptoms, Should I Try Going on a Gluten-Free Diet?

No! When gluten is eliminated from the diet, the villi heal and the results of a biopsy will not be accurate or reliable. Individuals are advised to wait until they have been positively diagnosed with celiac disease before going on a gluten-free diet.

I Have Just Been Diagnosed With Celiac Disease, Should I Get My Family Tested Too?

Yes. Evidence suggests that first-degree relatives (parents, siblings, and children) have an elevated risk for celiac disease, as do second-degree relatives (grandparents, grandchildren, aunts, uncles, cousins) to a lesser extent. The Kogan Celiac Center recommends screening serology for these family members.

What Is Gluten and What Is a Gluten-Free Diet?

Gluten is a general term for certain proteins that are found in wheat, barley and rye and are responsible for triggering the autoimmune reaction that is the hallmark of celiac disease. There is currently some controversy about whether a similar protein found in oats causes a similar response. Individuals who follow a gluten-free diet eliminate gluten and all derivatives of it from the food that they consume.

Grains that are NOT acceptable on the gluten-free diet are: wheat (otherwise known as enkorn, durum, faro, graham, kamut, semolina, spelt), rye, barley, and triticale (a cross between wheat and rye). Obvious places for the above grains are breads, pastas, and baked goods but processed foods can also contain other hidden sources of gluten.

There are many grains and other sources of starch that are acceptable for anyone following a gluten-free diet. The most common are corn, potatoes, rice and tapioca (sometimes called cassava). Other acceptable grains and sources of starch are: amaranth, arrowroot, buckwheat, millet, quinoa, sorghum (sometimes called jowar), sweet potato, taro, teff, and yam. Sometimes flour is made from beans, legumes and nuts.

The Kogan Celiac Center is committed to providing expert nutritional education to help individuals manage the gluten-free diet and accompanying lifestyle changes.

If I Have Celiac Disease, Do I Have to Follow a Gluten-Free Diet Forever?

At present, there is no treatment for celiac disease other than strict, lifelong adherence to a gluten-free diet. Exposure to even a small amount of gluten will cause damage to the small intestine... you cannot “grow out of” this disease! Over the course of time, intentional or non-intentional ingestion of gluten increases risk for many diseases including but not limited to lymphoma, osteoporosis and many other complications of malnutrition.

What Is The Kogan Celiac Center?

The Kogan Celiac Center offers treatment and education for adults and children with celiac disease. The Center is dedicated to providing expert treatment, education and support to improve the health and well being of those who have this disease.

Where Is The Kogan Celiac Center Located?

The Center is located at the Barnabas Health Ambulatory Care Center, Suite 123, 200 South Orange Avenue, Livingston, New Jersey. For further information, you may call us at (973) 322-7272.

How Does the Program Work?

The Center offers nutritional counseling, periodic screenings, and community-based education events and provides comprehensive information regarding System healthcare professionals.

Our nutritional education program, Celiac Steps to Success, divides the process of learning how to eat and live gluten free into easy, manageable steps. Patients meet with a Registered Dietitian at regular intervals and learn how to implement changes that meet dietary guidelines and address lifestyle needs. This sequence typically runs over a 6 month period, after which annual follow up visits are recommended.

Are There Support Groups for People With Celiac Disease?

Many national support organizations have local chapters which host regular support group meetings. The Kogan Celiac Center also hosts monthly support groups for adults, teens and children. Please call the Center for more details.

How Do the Recent Changes in Labeling Laws Affect Someone Following a Gluten-Free Diet?

As of January 1, 2006, the Food Allergen Labeling and Consumer Protection Act requires manufacturers to provide certain information about the ingredients they use to make their products. They must specify in plain English any ingredient that contains protein from any of the eight major food allergens: milk, eggs, fish, crustacean shellfish, tree nuts, peanuts, wheat, or soybeans. Consequently, an individual with Celiac Disease can know very quickly whether a product contains wheat; note, however, that there is no current requirement for barley and rye to be mentioned on a product’s label.

This law also required the FDA to further examine gluten as an ingredient of concern and to make a final ruling regarding the use of the term “gluten free” on food labels by no later than August 2008. The final ruling is expected to define “gluten free” as meaning that a product must have less than a predetermined amount of gluten in it, usually measured in parts-per-million. Check here for up-to-date information as this law and the regulation of gluten labeling evolves.

What About Alcohol?

It is currently believed that the gluten protein is too heavy to be transferred to food or drink during the distillation process. So, distilled alcohol is considered safe for those following a gluten-free diet as long as no additional colorings or flavorings are added. However, traditional beer and other malt beverages are made with barley and are not gluten free – explore online to find gluten-free beer that has been developed in past years.

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