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Going Gluten Free | By Dr. Lenny Salzberg

More and more Americans are giving up this protein found in wheat, rye and barley. Some of them suffer from celiac disease but others suspect gluten is the culprit in a host of other health problems. Dr. Lenny Salzberg is CityView’s health correspondent, a physician and a parent. Here’s what happened when his family gave up gluten.

When I was a kid, I was always the shortest person in my class. During my annual check-ups, my doctor would measure my height, shake his head and tell my parents the same thing: “Give it time, he’ll grow eventually.” No one worried until my brother injured his wrist and had an X-ray. The radiologist’s report read, “Normal wrist of a 6-year-old boy.” The only problem was my brother was 9. Finally concerned, our doctor ordered an extensive endocrinology work-up for both of us. This showed nothing; we had “constitutional growth delay.” We would grow once we hit puberty but puberty would be delayed. Now, 30 years later, my 11-year-old son Jacob is the shortest in his class. The working diagnosis is once again constitutional growth delay. Jacob also has attention deficit hyperactivity disorder (inattentive type) and is iron deficient. We suspected that Jacob might have undiagnosed gluten enteropathy also known as celiac disease. One in 250 test positive for this genetic disease, and it is receiving more attention than ever. In 2003, just 40,000 Americans had been diagnosed with celiac disease; today, it’s 110,000. If everyone with the disease were diagnosed it would be three million, according to the University of Maryland Center for Celiac Research in Baltimore. But when I was a child, celiac disease was considered rare, therefore it was rarely detected. The blood test available then was unreliable; only infants with diarrhea, abdominal pain and weight loss received an intestinal biopsy to make a diagnosis. We now know that this classic presentation occurs in less than 25 percent of patients. Iron deficiency anemia is the most common presentation of celiac disease today. There are two relatively new blood tests that have made diagnosis much more reliable yet Jacob tested negative for both. Does this rule out celiac disease? Not necessarily. The tests are 90 to 95 percent sensitive, so there are still some people that it misses; maybe Jacob is one of them. In any case, my wife, daughter, son and I decided to try a gluten-free diet. Glutens are proteins found in wheat, rye and barley that give dough its elasticity and chewiness. Anything made from these grains has gluten – bread, pizza, pastries, pasta, gravies, hot dogs, condiments, cereals and cake are all off limits for someone on a gluten-free diet unless their food is specially prepared with wheat substitutes. This was going to be a problem. My family loves pasta. At first, we tried DeBole’s® gluten-free pasta made with rice, quinoa and amaranth, but the pasta sheared when we put it in the colander and clumped together when we served it. My wife liked it but my daughter would not eat it – she said the pasta smelled bad and tasted like peanuts. Next, we tried Notta® pasta, which our children liked but my wife didn’t. Made from rice flour and tapioca starch, Notta pastas tasted good and held together well. And then was the problem of bread. Jacob was used to eating an English muffin for breakfast and a sandwich for lunch at school. We finally found kinnikinnick® tapioca-rice English muffins and kinnikinnick white sandwich bread in the freezer section at Harris Teeter. We just had to remember to take them out the night before to defrost. We found gluten-free menus at Carrabba’s Italian Grill and Outback Steakhouse. Accustomed to child’s menu prices, however, the bill came as a shock; only adult meals are on the gluten-free menus. And what about those kid favorites like pizza and mac and cheese? Glutino® makes both a cheese and a spinach and feta pizza. Jacob did not like the cheese pizza particularly but enjoyed the spinach and feta variety. Annie’s Homegrown® makes a boxed rice pasta and cheddar and, at first, this was better than nothing. But after three months Jacob now says he “hates” it. Did our trial work? Jacob grew more than an inch in his first month on the gluten-free diet, as much as he’d grown in the previous 12 months combined. He was paying better attention in school. His librarian told my wife, “Whatever you’re doing with Jake’s diet, keep doing it.” But the trial wore on Jacob and, after two more months, he didn’t grow any more. We had planned to keep Jacob gluten free from August at least through December but one Saturday in November, he “accidentally” ate a piece of birthday cake at the park when out with friends. This was the beginning of the end. Was it a success? I’m not sure. Growth isn’t linear – children usually grow in spurts and typically more so in the summer when the days are long. So was it the gluten-free diet or was Jacob just due for his growth spurt? We’re going to try again this summer so stay tuned. I’m also going to get tested for celiac disease. If I have it, my son and brother probably do as well. Dr. Lenny Salzberg teaches and sees patients at the Southern Regional AHEC Family Medicine Center.