Celiac Disease

Celiac disease, also known as celiac sprue or gluten sensitive enteropathy, is a digestive disease that causes damage to the small intestine.  Your child has recently been diagnosed with celiac disease.  This sheet is not meant to give exhaustive information about celiac disease, but to give you further resources where you can gain current, helpful information. It is also to help you to understand better the role of our clinic in your care.

What is celiac disease?

For those persons with celiac disease, eating foods containing gluten causes damage to the lining of the small intestine. Gluten is a very common protein found in wheat, rye, barley and possibly oats.  The small intestine normally has many “finger-like” projections called villi where nutrients from food are absorbed into the body.  When a person with celiac disease eats gluten, these villi are blunted or cut off.  The body is then not able to absorb nutrients properly. This may lead to malnutrition.

Celiac disease is relatively common, especially in certain populations.  It has a genetic component and can be seen in different members of the same family.

What are the symptoms of celiac disease?

The symptoms of celiac disease vary.  The more “classic” signs include diarrhea, difficulty gaining weight or weight loss, abdominal pain or bloating, or other signs of malnutrition.  There may also be signs in other areas of the body beside the stomach and intestines.  Since screening tests have become available, more people have been diagnosed even without the “classic” symptoms.

How is it diagnosed?

Blood tests can be used to screen for celiac disease and monitor the results of a gluten-free diet.  Results of the blood tests can vary so your doctor will help to interpret the findings.  Since treatment is a life-long dietary change, the diagnosis is not made from the blood tests alone but from an intestinal biopsy.  During an endoscopy, a small tube is passed through the mouth, down to the stomach, and then into the small intestine.  Biopsies, or small scrapings of tissue, are removed and sent to the lab.  They are looked at under the microscope to see if the villi are damaged.

How is celiac disease treated?

The only treatment for celiac disease is a gluten-free diet.  With this, the villi in the lining of the intestine will return to normal in appearance and will work properly to absorb nutrients.  Since gluten is present in so many foods this diet can be challenging, but it is also extremely effective in preventing problems associated with celiac disease.  No one knows if there is any amount of gluten that can be eaten safely, therefore all persons should be on a strict gluten-free diet.  There are many resources available to help in managing the diet, some of which are mentioned below.

What are the complications of celiac disease?

Short term, celiac disease may significantly affect growth and development in children.  Problems seen with malnutrition, such as anemia (low iron in the blood), can affect people of all ages.  Long-term complications include osteoporosis (weakening of the bones), seizures and cancers of the intestine.  Miscarriage or birth defects may be more common in women with untreated celiac disease.

What can I expect from the clinic?

Once the diagnosis of celiac disease has been made from a biopsy, you will come to the clinic for a follow up appointment.  If you have not already received them, educational information will be provided at that time and we will try to answers as many questions as possible.  We will also provide you with other resources better equipped to answer questions about the diet and day to day living.

Long-term, we suggest periodic monitoring of blood tests.  High levels may indicate that some gluten remains undetected in the diet.  We also suggest periodic testing to be sure that signs of malnutrition are not present.  These tests may be done here or at your primary clinic.

What other resources are available?

Additional resources are listed on a separate sheet.  There are a variety of types of information available, particularly if you have access to the Internet.  Caution must be used when choosing which information to read.  We have listed sources and websites that we feel have reliable information, but this list is certainly not exhaustive.  Because information about the gluten content of specific foods and medications can change frequently, you will need to keep updated on a regular basis.

If you have further questions, please feel free to contact our clinic at 612-871-1145.

Local Gluten Intolerance Groups

Northland Celiac Support Group
Contact: Carol Hanson 651-489-0645

www.northlandceliacs.org

R.O.C.K. (Raising Our Celiac Kids) Twin Cities

www.twincitiesrock.org

04/08/2008