Celiac disease is an autoimmune disorder caused by an intolerance to gluten. Gluten
is the general name of the proteins found in wheat, rye, and barley and other grains
derived from them.
In kids with celiac disease, gluten damages villi, the finger-like projections
in the small intestine responsible for absorbing nutrients from food. When the villi
are damaged, the body can't absorb nutrients the body needs to grow. If that happens,
a child can become malnourished.
Celiac disease — also known as celiac sprue, gluten-sensitive enteropathy, and
non-tropical sprue — can lead to a wide variety of symptoms in different people. Infants
may not gain weight and height as expected (a condition called failure
to thrive). Older kids can have diarrhea, abdominal pain and bloating, weight
loss, fatigue, or painful skin rashes. Some people who have celiac disease have no
symptoms at all.
Doctors don't know for sure what triggers the immune system to react to gluten
in people who have celiac disease. There is no cure, although researchers are working
on developing enzyme pills to help with the digestion of the toxic part of gluten
that causes intestinal damage.
If your child is diagnosed with celiac disease, there are ways to minimize symptoms
and any damage to the intestines.
Symptoms of celiac disease can happen at any time in a child's life. Some kids
have symptoms the first time they are exposed to gluten, while others develop symptoms
after safely consuming gluten products for years.
A baby might show the first signs of celiac disease shortly after starting
on solid foods such as cereals. Those signs might include diarrhea, stomach
pain, and not gaining weight at a healthy pace.
Skin rashes also might appear, especially around the elbows, buttocks, and knees.
Over time, the child might develop anemia
and mouth sores, and become withdrawn or irritable.
The causes of celiac disease are unknown. It has been linked to other health conditions,
including Down syndrome, Diabetes mellitus, Williams syndrome, thyroid disorders,
and selective immunoglobulin IgA deficiency.
Celiac disease tends to run in families, so if there is a family history of celiac
disease, a child may have a higher risk of developing it. If one child is diagnosed
with celiac disease, his or her siblings, parents, and grandparents should be tested
too, as they may have the disease but no symptoms. Celiac disease that goes undiagnosed
in adults for a long time can lead to serious health problems.
Diagnosing celiac disease usually begins with a simple blood test that measures
the level of antibodies to gluten and other proteins in the lining of the intestine.
If high levels of these antibodies are found, the doctor will likely order a
of the small intestine and send it to a laboratory for testing.
Doctors take this tissue sample by inserting a long, thin tube (called an endoscope)
through the mouth and stomach into the small intestine. A child is usually moderately
sedated or given general anesthesia
for the procedure.
If your child is diagnosed with celiac disease, the doctor will guide you on
which foods your child can eat and which to avoid. Because these changes will greatly
affect your family's everyday life and your child's diet, the doctor may suggest that
you meet with a nutritionist for advice.
Wheat, barley, rye, and related grains should be eliminated from your child's diet.
But because there's no law requiring food manufacturers to list gluten on food
labels, this can be difficult.
In general, it's wise to stay away from foods that contain these gluten-related
bouillon and broths
breading (such as the coating on breaded chicken cutlets, etc.)
brown rice syrup (often made from barley)
cake flour (made from wheat)
caramel color (occasionally made from barley)
creamed or breaded vegetables
dextrin (a rare ingredient that may be made from wheat; maltodextrin is OK)
dry roasted nuts (processing agents may contain wheat flour or flavorings)
french fries (if they've been coated in flour)
gravies and sauces (including some tomato and meat sauces)
imitation bacon, crab, or other seafood
luncheon and processed meats
malt or malt flavoring (usually made from barley)
modified food starch (most food manufacturers now list the source of this ingredient;
e.g., modified cornstarch, which is OK, or modified wheat starch, which is not)
seasonings (pure spices are OK, but check seasoning mixes for gluten-containing
some herbal teas and flavored coffees
soup mixes and canned soups
soy sauce and soy sauce solids (they may be fermented with wheat; don't use them
unless you verify they're OK with a dietitian)
spreads, soft cheeses, and dips
wheat-free products (many wheat-free cookies and breads contain barley or rye
flour, which contain gluten, and other gluten-containing ingredients)
yogurts with wheat starch
It is generally safe for kids with celiac disease to eat oats that come from an
uncontaminated source. That means that the oats have been processed in a mill that
doesn't process grains that contain gluten on the same equipment.
The label on the package of oats should clearly state if that's the case.
To avoid gluten — and prevent triggering your child's celiac symptoms — it's important
to carefully read the labels of all foods before you buy them or let your child consume
them. And help your child learn to do it too. When in doubt, the safest thing to do
is to assume the product contains gluten and leave it out.
In the United States, all foods must be clearly labeled if they contain any of
the top eight food allergens, including wheat. However, wheat-free doesn't mean gluten-free,
as some wheat-free products may have gluten-containing grains like barley and
rye in them. Lawmakers are working to make labels easier to understand by requiring
companies to identify other components, such as hidden ingredients and barley and
Eating Away From Home
People with celiac disease aren't limited to eating at home. With experience and
knowledge, you'll be able to figure out which dishes at restaurants or friends' homes
contain gluten. A local support group might have a list of restaurants where the chef
is familiar with the gluten-free diet. Some restaurants now offer gluten-free dishes
on their menus — be sure to ask.
Sometimes, no matter how well prepared you are, you might not be able to find out
if a particular food is gluten-free. When in doubt, order something else for your
child to eat!
Here are some tips to remember when choosing foods:
Start with the foods your child can eat. Foods and ingredients
that someone with celiac disease can eat and use in cooking include: foods made with
the flours of corn, rice, buckwheat, sorghum, arrowroot, garbanzo beans (chickpeas),
quinoa, tapioca, teff, and potato (provided other ingredients in your recipe do not
contain gluten). Also OK are all plain meats, fish, chicken, legumes, nuts, seeds,
oils, milk, cheese, eggs, fruits, and vegetables.
Be on the lookout for possible cross-contamination. Even when
eating or preparing foods that are gluten-free, if these foods come into contact with
foods that contain gluten, there is a risk of cross-contamination. For example, crumbs
from regular wheat bread can find their way into jams, spreads, or condiments if people
aren't careful to use a fresh knife or utensil each time. Keeping condiments in squeezable
bottles and using separate jams and spreads for people with celiac disease is a great
idea. It's also wise to keep a separate toaster for gluten-free bread.
If you bake with products that contain gluten, thoroughly clean appliances, utensils,
and work surfaces before preparing gluten-free products. Remember to wash your hands
well and often when you're cooking and preparing food.
In restaurants, tell the server or the kitchen staff about your child's condition
and make sure that they know that it's important that your child's food not contain
any gluten or related ingredients.
Most grocery stores carry some gluten-free bread, cereal, baking mixes, cookies,
crackers and other products. Health food stores and natural food markets may have
wider selections of these foods. It's not a good idea to use gluten-free products
from bulk food bins because of the risk of cross-contamination.
Even if you take precautions, chances are your child may accidentally ingest gluten
at some point. That's OK — a single small amount of gluten ingestion may cause mild
inflammation in the gut but probably won't cause any immediate symptoms. Normally,
the lining of small intestine completely renews itself every 3–4 days, so after a
single incident the damaged cells are quickly replaced with new ones. However, repeated
exposure to gluten will lead to ongoing damage of the intestinal lining.
Helping Your Child Cope
What experts know about celiac disease is developing so rapidly that many books
and websites are out of date. To make sure you always have the most current and accurate
information, consider joining one of the national celiac organizations. There are
even gluten-free summer camps and special support groups just for kids and teens.
If your child has celiac disease, it's important to educate the other adults in
your child's life — other caregivers, teachers, school nurses, camp counselors, babysitters,
and friends' parents — about the condition, and to explain the importance of keeping
foods with gluten away from your child. Teach older kids not to accept foods from
others unless they're from someone who is known to be diligent about ensuring
the food is gluten-free.
It may be difficult for your child to adapt to a gluten-free diet and, at first,
it can be challenging for you to make all the right accommodations. But over time,
you and your child will get to know which foods are safe and which are off-limits,
making it easier to find meals, snacks, and ingredients that won't cause celiac symptoms.
Symptoms get better quickly after gluten is eliminated from the diet and kids make
the transition to gluten-free eating. But kids who have mild or no symptoms may
have a more difficult time with making and keeping dietary changes. In such cases,
strong family support is especially important.
It also helps to find support groups, many of which have special events for kids
to help them realize they're not alone with these dietary problems. Talk to your doctor
about finding such resources in your community.