Children with Celiac Disease
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Celiac Disease in Children

Though Celiac Disease has been being diagnosed for centuries, only recently have doctors started to diagnosis this disease in children, beginning in children as young as 6 months old.   Though there is still a lot to be learned, here is a collection of what is known (or believed) about children with Celiac Disease.   We have broken the page down into categories for your convenience.

Infants with Celiac Disease

The symptoms of celiac disease in children typically become apparent three to five months after first consuming gluten- containing foods, although for a few extreme cases, the interval may be as short as one month.  Several of the experts on infant feeding advise that solid foods should not be introduced to a baby’s diet until nearly five months old and that cereal containing gluten should be avoided for the first six months of a child’s life.

An infant with Celiac Disease but otherwise completely normal baby, will thrive until gluten is introduced into the diet.  At this point the infant will typically begin to refuse feedings and often fails to gain weight.  The child may gradually become irritable or listless and develop a large abdomen.  The infant’s stools will typically become abnormal, perhaps large, pale and offensive, or representative of a loose-like diarrhea.  Stools generally float because of the high content of air and fat.  The child may also vomit from time-to-time or in some cases exhibit forceful projectile vomiting with the consumption of selected gluten-containing foods.  Many children lose weight or have a failure to gain weight and the buttocks become flattened.  Some few children may become quite ill with acute diarrhea and dehydration.  Symptoms vary and are different from one celiac child to the next with no two being alike in how the condition “acts out” for them and in their bodies.

Older Children with Celiac Disease

As children with Celiac Disease move out of the infant phase (ages 3-12), you will typically notice more subtle symptoms of poor appetite, poor growth, and anemia.  At this stage, Celiac Disease can be much more difficult to diagnose as there are many other reasons for failure to grow in childhood.  Clinical symptoms often diminish or disappear during puberty [adolescence], although biochemical or morphological abnormalities of the celiac condition may persist.  More active symptoms will again reoccur in early adult life following the period when the immune system appears to “give more of its attention” to sexual development.  While the teen may feel that he or she has “grown out of the disease,” the actuality is that the condition continues and must be treated with the same strict gluten-free diet.

Celiac Symptoms to Expect – Personality changes may occur in children with celiac disease; selected children may become unable to concentrate, be irritable, cranky, and have difficulties with mental alertness and memory function; however, the same process may also occur in teens and adults.  Before removal of gluten from the diet, celiac patients may experience selected neuro-psychiatric symptoms including mood changes, irritability, and depression.  The celiac parent may need to reduce expectancies in learning, following explicit directions, and in carrying out selected aspects of basic discipline for their celiac child.

The damage to the mucosa lining of the small intestine is the same for both children and adults.  There appears to be a rapid loss of cell surface with the result, even with increasing cell recovery, it is unable to keep up.  The loss of absorptive surface cells of the mucosa of the small intestine results in failure to digest and absorb food from the small intestine into the blood.  The concentration of gluten is highest in the upper part of the small intestine, just beyond the duodenum, where the absorption and the damage to the bowel occur.

In the person with celiac disease, products derived from wheat, which contain proteins commonly called gluten or gliadin, cannot be digested because of an immunological reaction to the toxic prolamins in these proteins.  Products produced from barley, rye, and oats cause the same immune response because their prolamin content has similar amino acid sequences.  Wheat, however, is the only grain that contains all of the toxic prolamins.  It is from wheat gluten that we have the base nomenclature for the gluten-free diet.

The continued consumption of the toxic prolamins in a person who is affected with celiac disease causes a reaction that destroys the villi in the small intestine (the jejunum), resulting in malabsorption of vitamins, minerals, proteins, amino acids, sugars, and fats.  In children, this malabsorption may also cause bone problems because of lack of calcium, varying levels of abdominal distention, vomiting, muscle wasting, and failure to properly grow and develop.

Why Does My Child Have Celiac Disease? – Celiac disease presents a wide spectrum of symptoms.  The three central factors that appear to relate to onset include the following:  inheriting the “right” genes, the appropriate gliadin from a grain protein to cause a  toxicity, and the action of the immune system.  The genes that determine celiac disease can come from one or both parents in the blood line.  In from 2 to 15 percent of families in which one parent has celiac disease, multiple members will have the potential to develop the condition.  Most researchers indicate that same family siblings appear to have a 30 to 40 percent risk of developing celiac disease.  While the HLA genes are necessary to cause and develop celiac disease, they alone are not sufficient to cause the condition to be activated.

The Gluten-Free Diet – Beginning with the diagnosis of celiac disease, it is important to find the best way of helping that child to accept the fact that there are certain foods that he or she cannot eat.  Parental and sibling attitudes and the attitudes of friends in the community will be important as well.  If family members and friends can accept celiac disease and the diet as a way of life, it will be much easier for the child—now and later in life.  The dictates of a strict gluten-free diet can be more easily communicated to children if the emphasis is on “what you can have” rather than “what you can’t have.”  Lists on the refrigerator, having their snack drawer, and a program of gluten-free food items that includes everyone in the family at meal time will be helpful.  Having their lists at restaurants, snack shops, and at school will be supportive and helpful.

With a celiac child, the family then becomes a celiac family.  For most families, it is typically best if the entire family is on the gluten-free diet.  That is not to say there should not be special occasions and specialty foods from time-to-time.  If all main dishes can be the same, much of the feeling of being different in the home will be removed.  Exceptions are most often breads, cakes, and pastries, but even these staples should be provided for all family members if there can be acceptance and a good attitude.

It is important that the child understand as many aspects of the gluten-free diet as necessary for his/her stage in life.  The symptoms and difficulties that may be encountered in going off the diet can be dealt with in a simple, straightforward manner.  These matters, of necessity and in the interests of self-care, must be handled without threat and without instilling fear or guilt.  As the child learns about himself and his/her body, he or she needs also to learn about the digestive system, this particular disease and how to handle it appropriately.

Treatment of the Celiac Child –  Special needs, special skills, special interests should be treated as such; and, without making the child to feel different or “not quite good enough.”  Attitude and parenting skills on the part of the parents and extended family members will go a long way toward not having the child enter into any aspect of what may be referred to as “the sick child syndrome.”  Since one or both parents may find themselves overextended or overprotective with their own child  who has the celiac condition, it is often helpful to review and discuss management practices with the child’s pediatrician and the school nurse or counselor.  Teach and represent these skills to grandparents, friends, and extended family.  Big ears, big feet, having an allergy or diabetes, getting a C in English, and having celiac disease are all a part of reality and life.  Keep them all in their place.  Do not help to create nor set yourself up for a “poor sick child illness” that could be worse (and is typically always worse) than the celiac condition.

It is also highly desirable for parents not to become obsessed with symptoms (should they recur), nor to become obsessive about checking stools and questioning behavior at school and away from home.  Do not blame every minor illness and infection on the celiac condition.  All children become ill; treat minor illnesses as matter-of-factly as possible.  If your child should “hold onto illnesses” such as infections, ear aches, and colds for a longer time and take a longer time to respond to medication and to get back to normal routines—make it a fun time for being together, for learning and reading together, for sharing with one another.  Look for opportunity and you will find it; look for despair and you can find it, too.

Encourage your child to accept invitations to parties and dine out as often as reasonable for your household.  Simply take along a few gluten-free foods that are appropriate for the occasion and regard that as standard operating procedure.  As a parent, make yourself aware of school and holiday functions and be prepared; at times such as Halloween, take treats to the several homes which your child will visit; for holiday and birthday parties, take and provide the appropriate foods for your child.  Make some extras so that other interested children might also sample and participate. When guests come to your home or you are hosting parties or after-school snacks for your child, provide gluten-free food for everyone; it will help your child to feel more secure in his or her own home.

Eating Out – Do not avoid eating out; obtaining a gluten-free meal in most restaurants and fast food establishments need not be difficult.  Fruits, grilled meats, vegetables, salads, eggs, and potatoes can be staple choices in many locations.  Teaching a child how to make wise choices will help him or her to be self-sufficient now as a child and later on as a teen when greater independence is allowed.  Look for restaurants that offer the most variety and that have staff members who will take the time to assist with making gluten-free choices.  Concentrate on food choices available that you can have rather than “sawing through” and negating all of the items you can’t have.  Help your child to develop “menu cards” for his or her billfold for the restaurants and hotels you visit most often. The name of the restaurant or fast food shop along with four or five appropriate food choices can then be readily available and provide a level of independence that does not then need parental input for each and every visit. Enlist and encourage cooperation and support from chefs and food staff members by expressing your thanks and appreciation for their thoughtful assistance.  Consider reminding your child to follow up your good experiences with either a telephone call or a note.

At School – For the school system, it will be helpful to have a “prescription” or letter from the child’s pediatric gastroenterologist regarding the diagnosis along with a brief description of the illness and the basic needs for the strict gluten-free diet.  A visit with the school nurse to highlight present behavior and present health status, and to learn how best to handle the needs related to the prescription diet in that particular school district will help to develop good connections within the school.  It may be possible to develop a team of the physician involved, the school nurse, and the school dietitian or head of the dietary department to consider the needs of the child and how he or she might best fit into the school represented.

Woven into the plan of action at school must be “helping the child to help himself” to move toward independence, self-management, and self-care.  Above all the plan must move out of and away from all potential for any child being labeled as a “sick child”—especially within the family and in the family’s introduction of the child to the school and community.  Do not look to the development of a protection system, but to the development of a facilitation program that relates to the needs represented in this student [a student who happens to have celiac disease].   The wise parent will not emphasize differences, problems, what my child can’t have, etc. and will then avoid getting onto the trail for the development of the sick child syndrome.

If your particular school cafeteria program can not be accommodating to gluten-free food selections, try sack lunches.  Hot and cold foods in thermos jars may need to be provided to supplement either a school cafeteria menu or a sack lunch.  Packing gluten-free sack lunches for dad or grandpa and enlisting evaluations of food selections from both children and adults can be become a meaningful involvement and brings the prescription diet into the family system.  Share with three or four of the commercial food vendors your need to prepare sack lunches.  Their dietitians and customer service representatives will come forward with excellent food offerings and sack lunch menu suggestions.

Teenagers with Celiac Disease

Most celiac teens will do an excellent job of keeping strictly to the gluten-free diet; a few do not.  Those teens who can stay on the prescription diet appear to be able to rise to any challenge and adapt without bother for what could be perceived as any kind or level of health problem.

Some teens do have a tough time “being different” from the crowd.  They may have a high need to impress friends in their peer group and also may feel they cannot be different in any way in the eyes of an employer or an authority figure in the school or community.  They may need extra encouragement and support and time to discuss their feelings and particular circumstances.  Above all, they must know and gain awareness and understanding that they have a life-long condition for which gluten is harmful.

As teens learn to know and understand their bodies and changes which occur, they may need to have assurance from both parents and their monitoring physician regarding the high attention the immune system will be giving to sexual changes and associated body developments.  For, it is during these months that it may appear that celiac disease has “gone into remission” or an even greater myth—“that they have grown out of the disease.”  Both of these concepts have no scientific basis.  The disease holds forth—perhaps with fewer or recognized overt symptoms.  Thus, the teen and young adult must be helped to understand that “once a celiac, always a celiac” is not just a trite or cute saying dreamed up by someone in the medical community.  It’s a well-researched fact.  And, most of all—teens and young adults need to maintain a strict adherence to the details of the gluten-free diet—now and for life.

High School and College – Dozens of boarding schools, college dormitory systems as well as Big 10/Big 12 as well as schools in the  Pacific Rim, and Ivy League have adequate flexibility to handle the gluten-free diet along with any associated specialty needs such as lactose intolerance and specific food sensitivities.   These schools and colleges want to help, they like be asked to help and are anxious to do their part if there can be communication regarding the need.  So, if the teen will be going away to college and chooses to live within a public system, there is good support and a high interest in dealing with the details of the gluten-free diet.  Some colleges will request a prescription from the physician; most schools prefer having special needs regarding diet indicated to them at the time of application for housing.   Students who may choose to live off campus but who wish to have some support from the university food services will typically find this service readily available to them.  With only a bit of pre-planning, foresight, and communication—meeting special dietary needs such as the prescription gluten-free diet will not be a problem for a college or boarding school student.

For some celiac patients, the intolerance to gluten appears to heighten periodically and to be close to remission at other times.  At this point, there are many case histories and much recorded data, but there appears to be no concrete answers as to why these patterns occur.  Most of all, such patterns must not be perceived by the celiac as an active or inactive phase of the disease.  The disease continues; its symptoms may be covert, but nevertheless, continue to be the primary illness for the individual.   And with the illness in place, the strict gluten-free diet must also continue to be in place.

The Gluten-Free Diet is for Life – The critical reason for banning gluten for life is that every small particle of gluten may do some damage even though the patient may not be aware of it as a problem at the time.  The realization and learning must be:  one molecule of gliadin can be as bad as ten thousand.  Case history data appears to define that later on in life, the patient who goes on and off the diet or who cheats here and there, is the patient who will run the potential risk of a severe relapse, the addition of other immune-related conditions, or new or related health problems will be introduced.   The message is very clear—the basic and cardinal premise for self-management of celiac disease is to avoid all gluten in any and all of its varying formats.  Saying “no” can be the ultimate of self-care.

For more information about children and celiac, see our Children with Celiac Disease category.

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