FAQ for Patients - Children
1. My pediatrician tells me my child has Celiac Disease, what does that mean?
Celiac disease is a condition in which one's immune system can attack the small intestine and cause damage. Sometimes there are other parts of the body that are also affected. In individuals who get celiac disease, the immune system is activated by proteins known as "gluten" that are found in wheat, rye and barley. The immune system is activated when food products made from these grains are ingested. Eliminating food products made from wheat, rye and barley from the diet can reverse the damage to the small intestine over time. Common symptoms of celiac disease in children often include abdominal discomfort and distention, diarrhea, poor growth and irritability. Although celiac disease can even be asymptomatic in some people, it still can cause problems later in life if it is not recognized and treated.
2. How is Celiac Disease diagnosed in children?
Many children with celiac disease first receive medical attention for abnormal stooling or for growth problems. Other children may have conditions that have strong associations with celiac disease (e.g. insulin dependent diabetes) and are found by screening using a blood test.
Several blood tests (often called serologic tests) are commercially available to screen for the possible presence of celiac disease. The major blood tests are the IgA tissue transglutaminase antibody (also known as the TTG), the IgA anti-endomysial antibody and the IgA antibody to deamidated gliadin. While useful for screening detection, the blood tests are by no means perfect. They are not meant to replace the small intestinal biopsy, which is essential to establish the diagnosis and extent of celiac disease. Please note also that very young children are likely to have false negative blood tests because the body has not had sufficient time to make the antibodies being tested. Individuals should not start a gluten-free diet, the only treatment for celiac disease, before their evaluation including small intestinal biopsy (obtaining tissue sample) is completed. This is because the damage to the intestine that is caused by celiac disease is reversible and eliminating gluten from diet before the biopsy is obtained can interfere with obtaining accurate test results and can make it very difficult to obtain a definite diagnosis.
Regardless of how children come to medical attention for suspected celiac disease, a definitive diagnosis requires analysis by an expert pathologist of the tissue obtained by small intestinal biopsy. The biopsy is obtained during a procedure called EGD (which is short for esophagogastroduodenoscopy). EGD is also called an upper endoscopy by some physicians. EGD involves swallowing a flexible tube with fiber optics that is placed into the mouth. The tube is passed down through the esophagus and stomach and into the small intestine. It transmits images of the internal walls of the upper digestive tract to a TV screen. Biopsies are taken through the same tube from various areas of the small intestine and looked at under the microscope for evidence of abnormalities that suggest celiac disease. While other medical conditions can cause symptoms similar to celiac disease, the biopsy findings of villous atrophy and increased inflammatory cells are characteristic.
3. I think my child has Celiac Disease, but the tests are negative, what should I do?
While the tests for celiac disease are excellent for diagnosing the condition, false negative results can occur (tests are normal but disease is present). In very young children (under two years old) blood tests can be unreliable and may need to be repeated at later times. Biopsy may give false negative results if an insufficient number of biopsies were taken or biopsies were not taken at the correct locations or optimally handled by the laboratory receiving the tissue. Also, patients already on a gluten-free diet may have negative test results because of partial treatment and in that case, endoscopy and biopsies would need to be repeated after restarting a gluten containing diet, usually for at least four weeks.
Genetic screening, on the other hand, is not affected by age, testing methods or diet and can be an excellent tool. However, their main usefulness is to help exclude the diagnosis. That is, if the major genes associated with celiac disease are not present, one can exclude the diagnosis with close to 100% certainty.
4. What are the treatment options for Celiac Disease?
At present, the only proven treatment is adherence to a life long gluten-free diet. There is currently ongoing research on the use of other treatments. However, all of these potentially new treatment modalities are still experimental and it could be several years before they are ready for widespread use.
5. Where can I find more information on Celiac Disease?
While we aim to provide comprehensive information on celiac disease, it is vitally important for patients and families to be connected to other people experiencing the same challenges to get first hand advice on this serious but reversible condition. There are several excellent support groups with local chapters throughout the United States and Canada as well as websites designed for the exchange of information and experience on celiac disease. We strongly encourage our patients and families to be familiar with some of these resources.
6. My child has no symptoms of Celiac Disease that I am aware of, but the blood test was done anyway by his/her doctor and is positive. Why should I take my child to see a pediatric gastroenterologist who specializes in Celiac Disease?
Only a portion of affected people manifest "classical" symptoms of celiac disease. Unfortunately, many doctors often do not think of or test for celiac disease and that is why only approximately 15% of patients with celiac disease have been properly diagnosed. It is now recognized that there are a large number of people affected by celiac disease whose symptoms are very mild or atypical, and often they themselves may not recognize anything is wrong. Since celiac disease is immune mediated and can affect multiple organ systems, untreated individuals who may now be asymptomatic can eventually develop symptoms or complications from this disease. Proper diagnosis and treatment is recommended for anyone with suspected celiac disease. A positive blood test should be followed by small intestinal biopsy to obtain a definitive diagnosis. A definitive diagnosis requires that your child be treated with a gluten-free diet and one does not want to make that commitment unless there is clear proof that your child definitely has celiac disease.
7. My child has symptoms of pain, bloating, poor weight gain, and diarrhea as manifestations for Celiac Disease, when will they go away?
These symptoms should go away over time once your child starts on a gluten-free diet. The duration of time can vary and it can take several months for the small intestine to completely heal itself after gluten is removed from the diet.
8. My child with Celiac Disease is shorter than his/her friends; will proper treatment help him/her grow?
Growth failure in children with celiac disease is caused by the inability to absorb nutrients because of damage to the intestine. Once the damage recovers with initiation of the Gluten Free Diet, the absorptive functions of the intestinal tract will resume and growth will be restored. Depending on the age and pubertal status, most children will experience a catch up phase where their growth potential may be realized. However, older children who have passed puberty are unlikely to grow if their growth phase has ended.
9. How can a nutritionist/dietitian help my child?
An experienced nutritionist/dietitian can be a tremendous asset for people with celiac disease. It can be very difficult to stay free of dietary gluten without expert help in knowing how to identify foods containing gluten. The dietitian also knows how to assess and advise on a nutritious well-balanced diet including evaluation for nutrient deficiencies. A skilled dietitian can provide information on recipes, food items, grocery stores, restaurants, and difficult to interpret food labels. While a gluten-free diet is a definitive treatment for celiac disease, maintaining a gluten-free diet is much easier with help.
10. Where can I find more information on a gluten-free diet?
In addition to help from an expert dietitian, information on a gluten-free diet can be found on the internet and numerous books are available in store shelves as well as from support groups, both local and on-line. With improved recognition, staying Gluten Free is becoming easier than before and we hope the trend towards improved food labeling will continue. One must be careful, however, to ensure that the source of information is up-to-date, reliable and based on sound, scientific evidence.
11. Should I tell my friends and family about what my child has?
The more information you can share with people around you the better off your child may be. Celiac disease should not be a hinderance to a happy, healthy childhood. At times, due to the necessity of staying gluten-free, your child will not be able to consume ordinary food items such as pizza, doughnuts and cakes commonly found in functions attended by other children. By letting people know about celiac disease and sharing as much information as possible about the condition, you will find people can be tremendously supportive and understanding about the need to stay gluten-free. You may also help someone to discover that they or members of their family may also be affected by celiac disease.
12. What is the best way to get my child through school?
School can be challenging for a child regardless of health status. A child who is newly diagnosed with celiac disease may experience additional difficulties. It is important to involve the teacher and school officials early on to help ensure your child stays healthy by adhering to the gluten-free diet. Children like to exchange food with each other; understandably the child with celiac disease cannot do that without risking gluten ingestion. Packing your own foods and asking the teacher for help will ensure your child stays gluten-free.
13. What is the 504 Plan and does my child with Celiac Disease qualify?
While most schools will work with a child with celiac disease to ensure recommendations are followed, in rare instances formal documentation indicating a medical necessity may be needed. A 504 plan is a legal document falling under the provisions of the Rehabilitation Act of 1973, designed to plan a program of instructional services to assist students with special needs who are in a regular educational setting. A 504 Plan ensures the special needs of a child are taken care of while they are in school, which some parents and teachers find helpful.
14. Will other children tease my child about having Celiac Disease?
It is difficult to answer that question because children are often unpredictable. While children may tease peers with obvious physical handicaps, individuals with celiac disease frequently will have no visible evidence that separates them from other children. While a Gluten Free Diet may signal to other children the uniqueness of an individual with celiac disease, children affected by celiac disease for the most part are well accepted and enjoy healthy relationships with other people.
15. Now that my child is diagnosed with Celiac Disease, what should I expect from my Pediatrician? My Gastroenterologist?
Children with celiac disease are no different from other children. They still require the same preventive health maintenance and anticipatory guidance as other children. While your Pediatrician may not be savvy with all there is to know about celiac disease, he/she does provide a valuable service by being the primary care provider. With the help of your Pediatrician, your child's pediatric gastroenterologist can focus on the specialized gastrointestinal issues your child may face with celiac disease.
16. What is endoscopy? How often will my child need to have one?
Endoscopy is a procedure in which a flexible tube with fiberoptics is used to look internally in the gastrointestinal tract. The direct visualization allows close inspection of the lining of the tract from the mouth all the way into the portions of the small intestinal surveying areas which may be abnormal. The tube also has within it a channel which allows a small pincher to pass and grabs snippets of tissues called biopsies which can be examined under the microscope to look for abnormalities. At our facility, EGD in children is done under anesthesia to alleviate certain risks associated with lighter type sedation.
17. If one of my children has Celiac Disease, what is the chance that my other children will have Celiac Disease?
Celiac disease is a genetic condition meaning immediate family members can share the same genes. The probability of celiac disease among first degree relatives (siblings, children or parents) is approximately 10-15%, compared to approximately 1% in the general population in the United States. Given such high probability, we strongly advise screening family members for the disease. A good history and physical examination are essential, and combined with serologic and genetic screening will help provide important answers. If the serologic tests are positive, a small intestinal biopsy generally should be done. If the immediate family member does not have the disease susceptibility genes, it is highly unlikely they will ever develop celiac disease.
18. Should I tell the other members of my family so they can get screened for Celiac Disease?
Absolutely! This is a condition where knowing the diagnosis and starting on a gluten-free diet may alter the quality of life in many individuals. Often people with vague symptoms may not fully appreciate they have a specific diagnosis for which a treatment is available. This is true especially in older individuals where the symptoms may not be intestinal and are seemingly non-specific. By sharing the information on celiac disease, you may be helping other people in the family improve their health.
19. My child accidentally ingested gluten. Should we seek immediate medical care?
Individuals who inadvertently ingest small amounts of gluten most often will have no clinical symptoms. In a very small number of highly sensitive individuals, even a minute amount may cause symptoms. The best approach is to avoid further gluten ingestion and if marked symptoms occur or persist to contact your gastroenterologist for advice. One important note to remember is that people with celiac disease can also experience conditions not related to their illness and these conditions should not be ignored or assumed to be necessarily due to accidental gluten ingestion.
20. How can I participate in finding an alternative treatment for Celiac Disease?
While numerous scientists are currently working diligently on solving this problem, increased public awareness and support will benefit the fight to find better treatments for this serious illness. Do participate in your local support groups and contribute to various entities working on this problem. You can help support the Wm. K. Warren Center’s fight against celiac disease by making a donation. Checks should be made payable to "Regents of the University at California", with the "Warren Medical Research Center for Celiac Disease" noted as a reference. Donations should be sent to:
Wm. K. Warren Center
University of California San Diego
9500
Gilman Drive, MC 0623D
La Jolla, CA 92093-0623
Your donations are very much appreciated and each donation is acknowledged by the Warren Center.