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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.

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.

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.

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.

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.

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.

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.

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.

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.

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.