Tri-County Celiac Support Group

Celiac Disease Information

What is Celiac Disease?

Celiac Disease is an inherited autoimmune disease. Ingestion of gluten (wheat, barley, rye or their derivatives) causes an autoimmune response that damages the small intestinal lining in genetically susceptible individuals. Celiac disease is estimated to occur in 1 of 133 healthy people (not showing symptoms) in the United States. For people showing symptoms, this statistic is dramatically increased at 1 in 56. Presently, it is estimated that more than 80% of individuals in the United States with Celiac Disease have not yet been diagnosed. Due to the large amount of symptoms, it takes, on average, about 7-11 years for a person to be diagnosed from their first onset of symptoms.

We are genetically programmed to react to various foreign proteins. The gliadin portion of the gluten protein is recognized as "foreign" in patients with Celiac Disease. An immune-mediated inflammatory reaction occurs which damages the intestinal lining. As a result of this damage to the intestinal cells, their slender, microscopic finger-like projections called villi are flattened thus reducing their absorptive surface and capacity.

98-99% of patients with Celiac Disease have a genetic marker (HLA-DQ2 or -DQ8). About 30% of the population has this genetic marker and simply having the marker does not indicate that one will have Celiac Disease. It is interesting to note that this marker is also present in individuals with Type 1 diabetes. A genetic test is available to rule out Celiac Disease, however, cannot be utilized to diagnose Celiac Disease.

Typically a person showing symptoms of Celiac Disease or a person with a first degree family member will be blood tested for Celiac antibodies. It is important that prior to this test the person has been eating enough gluten for about 8 weeks. If a person has been eating gluten free, the blood test will show a false negative if the person really has Celiac Disease. Some people are asymptomatic and are diagnosed with Celiac Disease once they are screened as a result of a first degree relative having been diagnosed. A second degree relative should discuss blood testing with their doctor. Based on blood test results, your doctor may recommend an Upper GI Endoscopy (EGD) with a biopsy of the small intestines. Many doctors still consider a positive biopsy as the "gold standard" for diagnosing Celiac Disease, however, these standards are starting to change.

The only current treatment for Celiac Disease is a strict gluten free diet. If you think you have Celiac Disease, it is important to get a diagnosis prior to going Gluten Free. The level of Gluten Free that a person with Celiac Disease must follow is extremely rigid and must be followed diligently. A diagnosis of Celiac Disease is a lifelong diagnosis. Following a strict gluten free diet will significantly affect your quality of life.

Symptoms:

Each case of celiac disease can have different symptoms. If you feel you may have celiac disease please see your doctor. There are 200-300 symptoms associated with Celiac Disease. Some people are asymptomatic and are only diagnosed after being screened due to a relative having Celiac Disease. Some common symptoms include:

Fatigue, lack of energy
Diarrhea and/or constipation (not as common in children)
Bone or joint pain
Weight loss
Anemia
Bloating, gas, abdominal cramping
Behavior changes, depression
Vomiting
Migraines
Infertility and/or Miscarriages
Itchy Skin Rash (Dermatitis Herpetiformis) (more information below)

What does a Celiac Diagnosis mean?:

People with celiac disease cannot eat gluten. Gluten is in foods which contain wheat, rye, barley or any of their derivatives (such as malt). Oats can be consumed if they are special Gluten Free Oats. However, it is believed by many that upon diagnosis oats should be completely avoided until villous atrophy has resolved. This is a question for you and your doctor to discuss. Gluten may be found in breading, crutons, marinades, malt, soy sauce, pasta, broth, lipsticks, modeling doughs (such as Play-doh brand), gravies, etc...

You CAN eat corn, rice, potato, corn starch and any other foods that do not contain wheat, rye, barley and regular (non-GF) oats. See our Gluten Free Lifestyle page for more details. Additionally, it is important to visit a Registered Dietitian skilled in Celiac Disease care to learn how to manage your new gluten free diet. Please refer to our Gluten Free section for more details.

Because a strict gluten free diet is very difficult to manage, typically your doctor will ask you to have tests run yearly to monitor the Celiac antibodies to detect unsuspected intake of gluten in your diet. Some doctors will monitor A, D, E, and K vitamin levels for awhile after diagnosis in addition to Iron depending upon the deficiencies you showed at diagnosis. On a strict gluten free diet, many people start to feel better very soon. Children seem to heal faster than adults. It could take adults a year or longer for the villi to heal. After diagnosis, it is important to talk to your doctor about what monitoring is necessary and to tell your doctor about how you feel. Some people are additionally lactose intolerant at diagnosis - this sometimes goes away as the patient heals.

Dermatitis Herpetiformis:

Dermatitis Herpetiformis (DH) is a very itchy skin rash which usually causes bumps and blisters on the elbow, knees, back and buttocks. The rash is typically symmetrical from the right to the left side of the body and can also look like eczema. Instead of blisters and bumps, some people have scratches and skin erosions. To confirm diagnosis, a doctor will biopsy the skin lesion and possibly also blood tests. A person with DH, like Celiac Disease, cannot eat gluten. According to the United States National Institute of Health, approximately 25% of people with Celiac Disease also have DH. DH is also an autoimmune disorder. Dapsone is a medication prescribed by the doctor to ease the skin symptoms. Like Celiac Disease, a strict lifelong Gluten Free diet must be followed with DH.

Links for Dermatitis Herpetiformis Information:

https://www.nlm.nih.gov/medlineplus/ency/article/001480.htm

http://celiac.nih.gov/Dermatitis.aspx

Education Essentials Kit from University of Chicago Celiac Center:

Are you newly diagnosed with Celiac Disease (with a biopsy within the last 12 months?). If so, The University of Chicago has an Education Care Kit. Click on this link to go to their website to apply for a kit. You will need to provide your doctor's information and testing information.