Dear School Counselor,

A student in your school has been diagnosed with an autoimmune disorder called celiac disease (CD). While this will affect some aspects of classroom and school management, patience and understanding can bring about the necessary changes that will quickly become a natural part of the school experience for all involved.

What is celiac disease?
Also known as celiac sprue or gluten-sensitive enteropathy, CD is a genetic disorder that can affect both children and adults. Once considered extremely rare, an epidemiological study has now shown that in otherwise healthy people, CD occurs in about 1 in 133 people. (See footnote 1 below.) This study was replicated in 2004 by a Casper, Wyoming gastroenterologist, in conjunction with Mayo Clinic. (See footnote 2 below.)

In people with CD, eating certain types of grain-based proteins sets off an autoimmune response which causes damage to the tiny fingerlike protrusions, called villi, on the lining of the small intestine. Because nutrition is absorbed into the bloodstream through these villi, a person with CD can become malnourished--regardless of the quantity or quality of the food eaten. The proteins that cause these difficulties are collectively called gluten and are found in wheat, barley, rye and,  common oats (WBRO), as well as all of their derivatives.

What are the Symptoms?
Exposure to WBRO results in a variety of symptoms which may include diarrhea, abdominal distention, anemia, fatigue and inability to concentrate. For a small number of people with CD, the disease manifests itself in small itchy blisters on the skin called dermatitis herpetiformis (DH). It is interesting to note that in the United States , non-classical symptoms tend to be more prevalent.

Symptoms may or may not occur in the digestive system. For example, one person might have diarrhea and abdominal pain, while another person has irritability or depression. In fact, irritability is one of the most common symptoms in children. Symptoms of celiac disease may include (but are not limited to) one or more of the following:

  • abdominal bloating and pain
  • anemia
  • behavior changes
  • bone pain
  • concentration difficulties
  • dermatitis herpetiformis (painful rash)
  • diarrhea
  • failure to thrive in infants
  • fatigue
  • gas
  • growth delays
  • joint pain
  • legs (tingling/numbness/nerve damage)
  • menstrual periods missed (often because of excessive weight loss)
  • mouth - pale sores, called aphthus ulcers
  • muscle cramps
  • seizures
  • stools - pale, foul-smelling
  • tooth discoloration or loss of enamel
  • weight loss

Symptoms can present themselves almost immediately or up to as many as 24 hours after exposure to the offending grains. In some cases the patient may not exhibit any visible symptoms. Because no two celiacs exhibit exactly the same symptoms, please refer to the back cover of this booklet to see a list of those particular to this student. Contact the parent/guardian or CSA for a more extensive list of possible symptoms.

How is CD treated?
This is a lifelong disease and the only known treatment at this time is the total elimination of WBRO from the diet. This might sound like an easy solution at first. WBRO may be hidden, however, in things like food additives, flavorings, personal care products, school supplies and more. Therefore, some adjustments may need to be made in the classroom and other areas of the school to reduce the risk of inadvertent contact.

How will I be involved?
GRIEF
Because the treatment for CD involves giving up many of the things children love - pizza, hamburgers, most ice creams, puddings, cookies, etc. - those diagnosed with this disease often go through the typical stages of grief. You may observe signs of sadness, denial, shock, confusion, anger, irritability, loss of appetite, physical complaints, loss of concentration, depression, or withdrawal from friends.

DENIAL
Even after a student has "adjusted" to having celiac disease he or she may occasionally exhibit denial by taking risks with foods known to cause difficulty. This is especially true for teens. It is important that the student understands that even "a little bit" of exposure to WBRO can dramatically impact his or her future health. According to research, even when there are no symptoms, small amounts of WBRO can take a toll on a celiac's intestinal lining. Continued damage to this lining, increases the risk of developing more serious health conditions including other autoimmune diseases, osteoporosis and cancers such as T-cell lymphoma. (See footnote 3 below.) You may need to help the student understand this risk and talk through his or her feelings about this risk.

CLASSROOM
Attitudes of understanding and cooperation are very important for the entire school community. The classroom teacher has been (or will be) informed of the needs specific to this disease and its implications in the classroom and other areas of school. You may be called upon to help the teacher, other staff members and/or students deal with their own grief relating to changes that may occur in their methods and routines.

Whose responsibility is it?
Ultimately, it is the responsibility of the student to decide what he or she will eat and touch while at school, knowing the consequences of those decisions. However, a newly-diagnosed celiac may need help to enforce the prescribed lifestyle change. The goal is to help provide the child with adequate information in order to increase confidence in living a lifestyle that is free of WBRO.

Where do I find out more about celiac disease?
The information contained in this material is not intended to be all-inclusive. It is provided to help you understand the importance of caution and preparation when working with a person with CD. More details on the disease and its management are available from the Celiac Support Association.

The goal is to provide an environment where the child with CD can learn self-management skills without being consumed by the illness. An atmosphere designed to foster responsible decision making will ultimately help the child perform well both in and out of the classroom.

Thank you for your help and support.

 

1 Fasano et al., Archives of Internal Medicine. 2003 Feb 10;163(3):286-92.
2 Katz et al., awaiting publication
3 Green et al., Lancet 2003. Aug 2;362(9381):383-91