Are You Sure Your Kid Doesn't Need a Gluten-free Diet?

For families affected by autism, gluten is one of the first items that may be beneficial to withdraw. Gluten is the protein in wheat. It's also in other grains (rye, barley, oats), and it turns up in small but havoc-wreaking amounts in dozens of flavorings, colorings, fillers, and thickeners used in everything from soups and salad dressings, to frosting, the flavor coating on french fries, and the batter that makes fish and chips, chicken nuggets, and tempura vegetables so good. What if your kid needed to avoid it?

Gluten sensitivity is quickly rising as one of the most undiagnosed conditions on the map. Because it's an easy condition to test for, it deserves wide attention-simply because it has been linked to many neurological, autoimmune, gastrointestinal, skin, and psychiatric problems, in several research efforts. Sensitivity to gluten may increase risk for several types of cancer. It is also a predictor of celiac disease, a condition in which the intestine becomes so damaged by gluten-triggered inflammation that nutrients are no longer absorbed normally. But long before sensitive individuals experience the end-stage damage of celiac disease, gluten sensitivity in itself can have devastating effects on learning, growth, behavior, and even whether or not a child is as likely to attend college. ADD, ADHD, autism, anxiety disorders, asthma, and depression are conditions that are over-represented among persons with gluten sensitivity and celiac disease. In other words, if you have any of those conditions, you are more likely to have gluten sensitivity. You are also likely to experience improvement if you eliminate gluten. Many studies have shown marked improvement in features for these conditions when gluten-free diets are followed.

What Is It about Gluten?

Unlike other trigger foods studied so far, gluten appears to have a uniquely irritating effect on the whole body when there is an inflammatory (antibody) response to it. People can have gluten sensitivity for years before they develop celiac disease. Antibodies to gluten, when produced by the body, have been shown to cross react with brain and nerve tissue in a number of studies. This means that if your child's immune system is forming antibodies to gluten, whenever he eats wheat, he may also be lodging an autoimmune attack on his own brain tissue. Symptoms of this noted in various studies range from headaches, "fogginess," and migraines, to seizures and tissue damage visible on MRI scans of the brain. Brain areas that are injured appear white and "ischemic"-that is, they are deprived of adequate oxygen to function and survive, due to chronic inflammation and tissue damage. Also shown by some research is the reversibility of this effect on brain tissue-actual recovery of the white areas to normal status on follow-up MRI, with the patient is on a gluten-free diet.

A neurological problem-not an intestinal one-may be the only manifestation of gluten sensitivity in some people. From epilepsy to Lou Gehrig's disease to ADHD and autism, gluten has been noted as the culprit for a cascade autoimmune effect in which very small amounts in the diet trigger a domino effect in brain tissue and nerve coating (myelin). Gluten sensitivity is not always the problem in these conditions, but when it is, a gluten-free diet can be life changing, or even life saving. Autoimmune conditions such as lupus or fibromyalgia may be linked to gluten as well. Even children with diabetes may experience better blood sugar control with a gluten-free diet. Usually, gluten must be strictly and entirely avoided for benefits to ensue. A little-such as using a bit of wheat-containing soy sauce-can cause a large reaction in more sensitive persons.

What Test Is the Right Test?

Ask for a blood test called deamidated gliadin antibody IgG test, not a celiac test (gliadin is a portion of the gluten molecule and is very specific marker for gluten sensitivity). If your child has "allergic shiners"-purple or dark circles under the eyes-have your pediatrician add a test for ferritin status. For children with undetected gluten sensitivity, iron deficiency anemia is more common, which will interfere with energy, learning, mood, and immune function. Remember, a celiac blood test may or may not include the gluten sensitivity part. If you had this screen done and were told it was negative, make sure your doctor included gliadin IgG in the celiac panel, not just gliadin IgA.

Technically, this is not a wheat allergy. An "allergy" response and a "sensitivity" response come from different fighter proteins in the immune system. Using the allergy test won't capture the information you need. Children can be gluten-sensitive and have a negative reaction on a standard allergy test for wheat, because these two tests look at different levels of response in the immune system. Certainly, children who show a positive allergy to wheat should avoid it. But if this test was negative, check the gliadin test mentioned above to screen to the next level. Leaving inflammation from gluten untreated can be very damaging, and may worsen autism, anxiety, ADHD, behavior, growth, attention, and overall nutrition status in children.

How Much Restriction Is Too Much?

Your child's growth pattern, energy level, mood, and behavior will tell you the answer to this question. Children with food allergies are at risk for poorer food intakes and more growth and learning problems than typical peers. Those who have food allergy severe enough to warrant avoidance of more than four major proteins (wheat, soy, dairy, egg, nuts) should be referred for nutrition assessment and monitoring, because it is hard to keep their diets adequate. They may need specialized medical foods to augment intake with "safe" proteins. Check with a licensed nutrition professional-ask your pediatrician for a referral-to review food intakes and growth pattern, and get individualized dietary suggestions.

Consider starting with just a gluten restriction. The inflammation from just gluten can be so pervasively irritating that it worsens tolerance for other food proteins. Removing just gluten may bring down inflammatory responses to several other foods by giving gut tissue a chance to be less inflamed overall.

What Are the Signs?

Some common signs of gluten sensitivity:

·        intractable reflux

·        not growing as well as expected

·        distractibility, ADD features, difficulty focusing

·        allergic shiners at eyes

·        white dots on nails

·        frequent headaches, fogginess, migraines

·        frequent complaints of stomachaches

·        irritable or mixed stools

·        sensory irritability or sensory integration issues

·        anxiety, depression

·        iron deficiency in spite of adequate iron intake

·        weak appetite in general

·        asthma

·        family history for allergies, neurological or psychiatric disorders

What if This Is Right for Your Child?

A gluten-free diet may help your child tremendously, if s/he has allergies, hay fever, asthma, mood or anxiety disorders, seizures, autism, or ADHD. Find out by getting the simple test above done with your pediatrician. If it turns out to be even slightly positive, you may be surprised to see how much that bit of inflammation has been bothering your child, once you withdraw gluten. Trying a gluten-free diet is the only way to know for sure if it will help, and you must be prepared to use this tool for at least three months. Meanwhile, make sure no other underlying nutrition problems are in the way that might slow progress with this effort.

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Judy Converse, MPH, RD, LD, is a licensed, registered dietitian specializing in pediatric nutrition for learning and developmentally disabled children. Her new book is Special-Needs Kids Eat Right: Strategies to Help Kids on the Autism Spectrum Focus, Learn, and Thrive (Perigee, 2009). For more help and resources on effectively and safely implementing a gluten-free diet for your child, visit NutritionCare.net.