LONDONDERRY — It took six doctors to figure out a protein in wheat was making 7-year-old Max Renke so tired he couldn't walk a mile and a half with the rest of his Cub Scout Troop in the town's annual parade.
Instead, Renke had to sit in a wagon and be pulled along because he was so weak.
Doctors then didn't recognize Max's symptoms as celiac disease, a lifelong disease that can be tamed with a gluten-free diet.
People with celiac disease suffer intestinal problems when they eat anything containing gluten — that covers a lot of food.
"Eating a crumb is just like eating a loaf of bread," Max said.
Now 16 and a Londonderry High School sophomore, Max has become somewhat of an expert on the disease and is an advocate for celiac disease awareness.
Last week, he met with Gov. John Lynch, who proclaimed May as Celiac Disease Awareness Month in New Hampshire. Yesterday, Max started distributing educational fliers about the disease to restaurants, medical offices and schools across the state.
Next week, Max will speak at the Celiac Disease Foundation's national convention in Pasadena, Calif. In June, he will address the Gluten Intolerance Group's national convention in Seattle.
"I had a difficult time and I know other people are having a difficult time," he said.
Max said the most important message he wants to get out is that celiac disease hasn't stopped him from doing things like going out with his teammates after a volleyball game. While his friends eat pizza, Max most often orders a salad.
"By now, I've really built up an archive of what I can and can't have," he said.
Soon after being diagnosed, Max formed an after-school club for kids who had dietary restrictions. Instead of eating, they would play games.
When he was 8 years old, he created a Web site about celiac disease, thatkidscompany.com. When he was 10, the site caught the attention of the Celiac Disease Foundation. It contacted Max and asked him to help educate New Hampshire legislators on the food labeling bill that was being debated in Washington, D.C.
Max explained the benefits of having food packages identify the top eight allergens. He told legislators such labeling would go a long way toward helping families like his. In 2005, President George Bush signed the bill into law.
In the last couple of years, gluten-free food has become easier to find. Even some restaurants offer a few gluten-free entrees or a gluten-free pizza.
But before the food labeling bill, choosing what to have for dinner could lead to serious problems. Max ate a lot of the same foods over and over again, like the same brand of rice pasta.
"Before the food labeling bill, my phone bill would be $500 a month," his mom, Laurie Renke, said.
She said she constantly dialed the toll-free numbers on the food packages to see if they contained gluten. And a lot of unlikely food does contain gluten — canned frosting, gum, salad dressing, ice cream and soda.
Another problem with celiac disease is that it has many symptoms.
Max's problems were mostly physical, but brother Jake, 14, had other issues before being diagnosed.
Jake had severe attention deficit hyperactivity disorder, but within two weeks of eating a gluten-free diet, 80 percent of those issues were gone, Laurie Renke said.
"It's a genetic disease, so the whole family had to be tested once Max was diagnosed," she said.
Even the family's dog is eating a gluten-free diet. If just a crumb of regular dog food wound up getting mixed up in Max's food, it could mean serious digestive problems.
"I can't chance any cross contamination," she said.
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