'Total elimination diet' helps some babies

By: REBECCA BOONE - Associated Press | Saturday, October 6, 2007 3:35 PM PDT ∞

EDITORS: Imagine eating only turkey, rice and squash for weeks. Breakfast, lunch and dinner. That's what AP reporter Rebecca Boone did when she decided to go on a "total elimination diet" to help her food-allergic baby. Although some doctors suggest switching to formula instead of adopting such a limited diet, Boone wanted to continue breast-feeding while identifying which foods were safe and unsafe for her infant daughter. Below, she recounts what she learned.

BOISE, Idaho ---- About the only thing I knew for certain when I had my daughter last December was that I would breast-feed. Every parenting book I'd read and every childbirth class I'd attended emphasized nursing's nutritional, developmental and emotional benefits for babies.

What I didn't know was one important thing: Some babies are allergic to foods found in their mother's breast milk, and my baby was one of them.

As a first-time mom, I didn't recognize the warning signs. Nina's frequent, anguished crying was colic, I figured, and her runny nose and chronic diarrhea were just the result of her first bug. Her difficulty nursing? That was probably just me not "doing it right." And I assumed she woke up every 40 minutes during the night because she just hadn't learned how to sleep yet.

At first, Nina's pediatrician eased any fears I had. My daughter was growing like crazy, and developmentally was right on track. But when the diarrhea failed to go away after a month and a half, and blood started appearing in her diapers, we visited a pediatric gastroenterology clinic and got the news: Nina had a severe food intolerance to dairy and soy products.

An estimated 6 percent to 8 percent of children under 3 have food allergies, according to the U.S. National Institute of Allergy and Infectious Diseases. A minority of those experience digestive-tract symptoms, ranging from pain and diarrhea to internal bleeding, chronic inflammation, extra tissue growth and failure to thrive.

Some good news: Most babies outgrow this type of allergy by preschool.

Trial and error

Unfortunately, there are no easy tests to determine just what the offending foods are. Breast-feeding mothers typically rely on "elimination diets" ---- cutting out some common allergens and seeing what happens.

"It gives the child the best chance for outgrowing the allergy," our nurse practitioner, Barbie Doherty at Idaho Pediatric Gastroenterology, told us.

Under her supervision, I cut all traces of dairy and soy from my diet and began keeping a food journal.

But Nina didn't get better. She got worse ---- more internal bleeding, more pain and more sleepless nights that left us both in tears.

Nina's doctor advised cutting more allergens from my diet. I began avoiding wheat, eggs and nuts, which along with dairy and soy cause the majority of food allergies. And because my food journal suggested they might be causing symptoms to flare, I also avoided fish, shellfish, citrus fruits, tomatoes and corn.

It was hard to do, but gratifying when Nina's chronically runny nose and eyes cleared. Her intestines continued to bleed, however, and her pain continued. I looked in my pantry and realized: Thousands of foods, additives and preservatives remained in my diet, all of them suspect.

At Nina's appointment that week, Doherty and I discussed my options. Nina could either go on an expensive hypoallergenic formula until she outgrew her food intolerances, or I could try a "total elimination diet," eating only a handful of foods and adding new ones, one at a time.

Remember all those "breast is best" baby books? I did, and chose the total elimination diet, or TED.

Total elimination

Doherty supported my choice, but reluctantly. She'd seen few parents in her practice who had succeeded with this method, and she noted that there is limited research on its effectiveness.

There's no clear consensus on TEDs among doctors. Some, like Paul Williams, a clinical professor at the University of Washington and chairman of the allergy and immunology section for the American Academy of Pediatrics, say total elimination diets are seldom the best way for breast-feeding moms to deal with food allergies.

"I can think of times when it might be beneficial to eliminate classes of foods, such as milk and soy, but if you have to do more, why continue to breast-feed?" Williams said. "You're going to have to limit yourself so much that you could possibly cause nutrition problems."

Williams generally recommends hypoallergenic formulas instead.

Critics warn that elimination diets can prolong a child's suffering while the mother tries to select the right foods.

But Dr. Bill Sears, an associate clinical professor of pediatrics at UC Irvine School of Medicine, is a proponent of total elimination diets to allow continued breast-feeding.

"It's only been in the last 10 years that it's been appreciated that these babies don't have just colic," he said. "A colicky baby is a hurting baby, and 90 percent of the time they hurt for one of two reasons: Either they have a food intolerance or reflux or both."

Parents should develop a food-allergy treatment plan only under a doctor's care, health experts note, and should get their baby a complete exam to rule out more serious health problems.

My husband and I talked it all over.

The formula wasn't covered by our insurance, and it would cost about $800 a month ---- more, as Nina grew. Not only could the TED save us a ton of money, it also would mean that Nina would get the other benefits of breast milk, such as fewer ear infections.

Our decision was made, and I picked my new menu: organic turkey, rice and squash, seasoned only with canola oil, sea salt and black pepper.

Fun ---- at first

The first few days were kind of fun, as I sought new and interesting ways to combine my few ingredients.

At the end of the first week, however, I'd lost close to 10 pounds and realized I needed to eat more. I bought a rice steamer for work and a deep fryer for home, frying either the turkey or the squash in canola oil at least once a day for a calorie-rich meal.

I worried that Nina wouldn't get enough nutrition from my breast milk on such a restricted diet, but a call to a lactation consultant assured me that I would have to be on the TED far longer than the few months I had planned for my milk supply to suffer.

The goal was to get Nina symptom-free and then add foods back into my diet slowly, watching her for any adverse effects. I daydreamed about pears, envisioning them baking for dessert, sweetening my rice cereal in the morning, serving as a compote for baked turkey. After the pears I planned broccoli, more for its nutritional super-food status than anything.

For support, recipes and firsthand experience, I turned to Web sites run by organizations like Kids with Food Allergies. Lots of moms were nursing on nothing but turkey, rice and squash, or other TEDs, I realized.

Jen Maidenberg, a mother of two in West Orange, N.J., dropped to only four foods plus olive oil and sea salt for four weeks because her son, 9-month-old Oliver, suffers from severe food intolerances.

"The most challenging thing was not being able to get something quick to eat when I was out. When you're nursing, you get hungry a lot so you have to be prepared," she said.

Maidenberg eventually had to switch Oliver to formula. But she said the TED improved her own health as well as his.

"I'd been diagnosed with IBS (irritable bowel syndrome), but I discovered it's clearly some sort of food (allergy) because it cleared up on the diet," she said. "This is the best I've ever felt in my adult life."

Maidenberg discovered that milk, wheat and gluten make her IBS act up.

Ultimately, although Nina improved, she was still bleeding occasionally after two months on my total elimination diet. We then learned that a mild bleeding disorder was complicating her reactions, and she was on the extreme end of the food intolerance spectrum.

Doherty and I agreed to switch to the prescription formula.

I battered myself with questions: Had I weighed the risks and benefits of breast-feeding correctly? Would it have worked if I'd tried quinoa, blueberries and zucchini, or some other magic combination? I was proud I'd been able to stick to the diet, but I was heartbroken that it hadn't "fixed" my baby's illness.

Gradually, however, I've come to realize: Despite all the baby books and expert advice, each child responds differently. Nina healed slowly on the formula, but she healed.

At the very least, the TED saved us the roughly $1,600 expense of a two-month supply of prescription formula. At best, I gave Nina some benefits of breast-feeding until she was 4 months old. And when we try solid foods (a landmark I hope is just around the corner), I'll have a better idea what we can try right away and what will have to wait a year or two.

On the Net:

National Institute of Allergy and Infectious Diseases: http://www.niaid.nih.gov/publications/pdf/foodallergy.pdf

Kids with Food Allergies: http://www.kidswithfoodallergies.org

American Academy of Pediatrics: http://www.aap.org

Bill Sears: http://www.askdrsears.com