Q: My child was just diagnosed with celiac disease–where do I start?

A consutation with an experience dietitian is the most important step after diagnosis.  Suzanne Simpson, RD, is the Center’s nutritionist and she is one of a handful of expert dietitians in the United States.  Please communicate with the clinical office directly(212) 305-5590 to facilitate your appointment.

Q: How long will it take my child to get better?

Many parents report a rapid improvement in their child, while some parents say it takes longer for healing. There is a learning curve to mastering a gluten-free diet, and it is natural to experience some “ups and downs” along the way. Before healing, some children may have additional food sensitivities, mainly lactose intolerance. Lactose intolerance does not always occur, so not all children need to avoid dairy products. When it does occur it is frequently temporary and will resolve with healing of the damaged intestine.
It may help to keep a food journal to learn what additional foods may be causing problems. Remember, too, that every episode of diarrhea or throwing up may not be due to gluten ingestion, but could be due to usual childhood illnesses.

Q: My child’s blood tests for serum antibodies are still positive 3 months after the diagnosis. What am I doing wrong?

You are not doing anything wrong! The blood tests need not be performed before 6 months after introduction of the gluten-free diet. They are unlikely to be normal by 6 months and can take up to 2 and sometimes even 3 years to normalize, depending on the level of antibodies in the blood at the time of diagnosis. It is a common problem that some physicians tend to repeat the blood tests too early after diagnosis and sometimes too often. If your child is thriving and you are vigilant with his/her diet, then feel secure that the antibodies will resolve in time.

Q: Do I need a dual household if some members of our family are not gluten-free?

Many families only cook some items separately for their family members with celiac disease. It is easy to make many items gluten-free for the whole family, such as sauces and gluten-free breaded chicken. For example, you might want to cook two separate pots of pasta (regular and GF), and then use a gluten-free sauce for both. Many families find it more economical to have some items, such as gluten-free cookies and pretzels for their celiac family members and “traditional” cookies and pretzels for the rest of the family. Gluten-free French toast can be made first on the griddle, and “traditional” French toast cooked afterward.

Q: How do I handle school lunches?

Think of what you would normally pack for your child’s school lunch, and then make substitutions where necessary. For example, a typical school lunch might be baby carrots, gluten-free yogurt, a sandwich on gluten-free bread, an apple, and a gluten-free candy, cookie, or brownie. The sandwich filling could be some of the same fillings your child has always liked–tuna, gluten-free cold cuts, or peanut butter and jelly. (Some parents recommend toasting the sandwich bread before making the sandwich.)

Q: Kids trade out of their lunch box–how do I handle that?

Many schools have a rule of “no trading” in the lower grades due to the increased prevalence of allergies, food sensitivities, and special food needs. You will still need to teach your child that the lunch you have packed is a healthy choice for him–and that he should stick with the choices you have selected together.

Q: Once a week the kids can buy their lunch and sit at a separate table–my daughter feels left out since she can’t eat the school pizza or chicken nuggets. What can I do?

Some parents provide a gluten-free pizza or gluten-free chicken nuggets on tin foil that the cafeteria can heat up. Ask the school cafeteria to provide you with their weekly schedule, so you can provide gluten-free substitutions for those special occasions.

Q: The GF diet is very expensive–are there foods I can buy at a wholesale club or the regular super market?

A number of foods available at wholesale clubs or at regular super markets are gluten-free. You must also learn to read labels and understand which additives contain gluten. See Help for Parents.

Q: How should I prepare my child’s elementary school personnel to better deal with my child’s special needs?

Experienced parents suggest writing a letter to the principal for placement in the child’s record explaining the diagnosis, and including information about CD and the need for a gluten-free diet. Arrange for a meeting with your child’s teacher and give the teacher a brochure about CD and a list of foods that are acceptable and those that are not.

Many parents write a letter to all class parents explaining that their child has CD, and ask them to give them a few days advance notice if there is going to be a birthday party or special treats so that they can provide a gluten-free treat for their child. Parents also leave pretzels, raisins, cupcakes, cookies or brownies with the teacher so their child won’t be left out if there are regular snacks or special treats and recommend leaving some gluten-free ice cream in the school freezer as well. It is also recommended to ask the school to store some gluten-free food in their freezer for emergency food situations. Even with these precautions, parents still need to warn their child that a substitute teacher or someone in the school might mistakenly offer him food that isn’t gluten-free. Teach your child to be responsible and ask, “is that gluten-free?” Remind your child that he doesn’t want to get sick. You may want to contact the school nurse and let her know that your child may experience throwing up, diarrhea or discomfort in the initial period of healing or in case of gluten ingestion. Ask the nurse to give your child free access to a bathroom (a private bathroom if possible) if your child is getting sick. This is a big issue with many children.

Q: What things should I tell my child’s friends to keep my child well?

When using your kitchen, your child’s friends should know your child can’t have gluten. Explain why there are separate “spreadables” like butter, margarine, cream cheese, mayonnaise, peanut butter and jam. Explain why you have two toasters. Explain why your child may not be able to accept treats that are traded or offered.

Q: My child is hungry all the time. Is that normal?

Yes, it is very common. Your child’s body has been “starving” to a certain extent, and is making up for the time before diagnosis that it wasn’t fully absorbing foods. Children’s hunger levels tend to normalize within the first year. Some foods are better at stopping hunger than others.

Q: My child fell behind in his growth curve for height before diagnosis. Will he make up that growth?

If diagnosed before puberty, your child should reach his full genetic height potential. If they are not making up their height, there may be other reasons that need to be evaluated, such as growth hormone deficiency.

Q: My doctor wants to screen our entire family for CD? Is that really necessary?

Yes, every family member should be screened with a blood test that measures serum antibodies for celiac disease because there is an increased risk of CD in family members, including those that are totally asymptomatic. One of the main reasons to screen asymptomatic children is to prevent the development of autoimmune diseases. Frequently asymptomatic children with celiac disease have autoantibodies to various organs such as antibodies that predict the development of thyroid problems or diabetes. When celiac disease is diagnosed in these children and a gluten-free diet is commenced the antibodies that predict the development of these diseases disappear from the blood. It appears that early diagnosis of celiac disease can prevent these other diseases that occur commonly in people with celiac disease. Early diagnosis can prevent the occurrence of symptoms due to celiac disease such as abdominal pain and diarrhea. The risk of malignancy in adulthood seems so far off, so many years away. However the diagnosis and treatment of a child dramatically reduces the risk of that individual getting cancer or lymphoma in adulthood! Screening should be with a panel of blood tests and the testing should be performed every 3 to 5 years because individuals can acquire celiac disease at any time in their life. If a family member has symptoms additional testing may be necessary, such as an intestinal biopsy even if serologies are negative. This is especially true if the family members are not ingesting much gluten, because a reduced gluten intake can result in loss of serum antibodies while the intestinal lesion remains affected. Many parents are ambivalent about screening their children because they do not want to deprive them of a pizza or donuts. Unfortunately, these fast foods are a social norm for American children. The long term health benefits to the children should however outweigh the social pressure of the “fast food culture” of the USA.

Q: Should family members who test negative on the screening test be retested in the future? How often?

Children should be tested with a celiac panel starting at age 5 to 7 years and repeated at 3 to 5 yearly intervals, unless there are behavior problems, gastrointestinal or neurological symptoms or growth problems, when earlier testing should be performed. If the antibody with the greatest sensitivity and specificity (the endomysial antibody) is positive, a biopsy should be performed. If the less sensitive and specific antibodies are positive (tissue transglutaminase and antigliadin antibodies in low titers) Confirmation in a laboratory with expertise in performing the tests would be advisable. If positive again, a biopsy is recommended. If negative, antibodies measurement should be repeated in 1 to 2 years.

Q: I’m a wreck whenever my 4 year old gets sick–I feel as if I’ve poisoned her. Even a barbeque at our neighbor’s (we supplied the sauce) got her sick. Are we supposed to stay home?

Unfortunately, gluten does not “burn off” of a grill or barbecue. You can put tin foil down on your neighbor’s grill, but you will have to be careful when eating out. If there are restaurants in town where you can establish a rapport, cultivate them. Some are often willing to keep a section of the grill gluten-free. Despite this it is important to be sensible and let your child socialize normally.

Q: My life changed dramatically when my child was diagnosed. Will we ever be able to travel or eat out again?

Most parents feel stressed after their child’s diagnosis because they are responsible for their child’s health, and keeping their child healthy depends on the gluten-free diet. It is normal to feel safer at home, where you are in control, but over time it gets easier. Most families feel that with learning and experience, they are able to go to restaurants, parties, travel–do almost anything. The key is to seek information from other people, including restaurants and travel destinations. It is very important that the child maintain normal social activities, otherwise it is likely they may reject the diet totally at an older age. Be sure to become a part of the celiac community where information is shared about gluten-free food that is available in “fast food” restaurants, restaurants in your area that are “celiac friendly,” and travel destinations, such as Disney World.

Q: After a child is diagnosed, what follow-up care is needed?

Referral to a dietitian knowledgeable about the intricacies of a gluten-free diet is important. These dietitians should be sought out and initial bad experiences, such as the family knowing more than the dietitian, should not deter seeking further dietary counseling. Regular follow-up medical care is important. Not only to document resolution of symptoms and normalization of blood test results (anemia, iron levels and antibodies), but also to ensure normal growth and development. Each family needs to be sure that their pediatrician cares about the need for following children with celiac disease as they grow and develop.

Q: I have heard that there are issues about which laboratories to use for serum antibodies testing. What are these issues? Should I be concerned?

Not all labs are created equal. There is a rapidly changing development of blood tests for celiac disease. It can take time for blood test results to find their right place in a physician’s armamentarium. An example is the tissue transglutaminase antibody test. Results in clinical practice have not confirmed the initial reports out of research laboratories. Currently a panel of blood tests are necessary for diagnosis and the endomysial antibody remains the gold standard. A number of laboratories perform the celiac panel that includes the endomysial antibody. They include Prometheus Labs, IMMCO Diagnostics, Mayo Medical and the University of Maryland. Other laboratories substitute the tissue transglutaminase for the endomysial antibody test. Many different factors influence where blood tests are performed. These include physician preference and convenience to the physician and patient as well as HMOs having contracts that state the specific laboratory that patients need to ensure reimbursement. Not all physicians recognize these problems of inter-laboratory variation in laboratory results.

Q: I think my child should be tested for CD, but my pediatrician disagrees. What should I do?

You should contact a local or national support group in order to get recommendations for pediatric gastroenterologists in your area who are knowledgeable about CD. Recommendations can also be found on some celiac websites. The Celiac Disease Center at Columbia and The Center for Celiac Research at the University of Maryland do offer advice about interpretation of test results.

Q: My child takes a number of medications. Are they safe?

All drugs, including vitamins, should be checked as to whether they are gluten-free. Do NOT discontinue any medications, though, without checking with your child’s physician(s). Because physicians are usually not knowledgeable about the content of drugs, it is recommended to contact your pharmacy directly or to call the pharmaceutical companies to ask if the medications are gluten-free. If any of your child’s medications contain gluten, consult your child’s physician(s) to see if alternative gluten-free medications can be prescribed. If alternative medications are not available, a compounding pharmacy may be able to make your child’s medication in a gluten-free form.

Q: My child is not invited to some of her friends’ parties. I have a feeling it is related to CD. I don’t want her to feel left out. What should I do?

This can be hurtful to you and your child. Parents can help their child understand that sometimes children or their parents may not be comfortable with accommodating special food needs. Some parents of CD kids encourage their child to be proactive–to make it known that they are ready, willing and able to bring their own gluten-free foods to parties.

Q: My six-year old daughter likes to play with cosmetics. Do I need to be concerned?

Some cosmetics, like lip products and nail polish can be sucked or chewed off by children, so it is recommended to find gluten-free counterparts, though this is usually not a problem because of the minuscule amounts of gluten that may be involved.

Q: My child sucks his thumb–is this a problem?

You should NOT need to be concerned about what is on your child’s hand, such as toys that are touched in waiting rooms that have food on them. Nail biting and thumb sucking are behavior problems that require sensitivity in their management. The amount of gluten would be negligible, especially if the child is basically gluten-free.