“I just really fell out of anything I really enjoyed with sports,” he says. “For me it was a mental thing, I felt like I had a lack of strength, a lack of ability. I didn’t want to do anything active. You look at pro athletes on TV and you don’t see any of them with sicknesses or diseases. In my mind I felt like what I had wasn’t conducive to being a good athlete.”
Pinto says he now takes a more proactive stance and has fine-tuned his diet. Now his main focus is spreading awareness. He is organizing a fundraiser for the Celiac Disease Center at Columbia University and teaming up with Guinness World Records for another event, also to raise funds for the Center. Both will take place this July.
“I don’t want kids to get the feeling that if they have to change their diet, they can’t do this or they can’t do that, so we really just want to raise awareness that it is not the end of the world,” says Pinto. “It’s just a little speed bump to get past.”
To help bring celiac kids together, Albertelli runs a group called Raising Our Celiac Kids (ROCK) that funds research and get-togethers for Long Islanders with gluten intolerance. She has raised more than $22,000 over the past three years. The group also helps bring awareness into the community and to connect those with celiac to the medical community.
“It’s an odd thing about how the medical field kind of lags behind,” she says, adding that her brother-in-law learned extensively about gluten-free baking at The Culinary Institute. “For some reason in med schools they have like a blurb on it and they pass it over.”
Celiac is relegated under the heading of a “rare disease,” as taught in medical schools, since it affects less than 1 percent of the population.
“I don’t want people to belittle it, because it’s real,” she says. “Some people don’t think it’s real.”
AGAINST THE GRAIN
For most celiacs, the relief is immediate after following a gluten-free diet.
“When I was feeling sick, I would eat bread or pretzels, what you’d think are the normal types of things that will make your stomach better,” says Pinto. “And it just kept making it worse and worse.”
Now, Pinto is very aware of the signs if he accidentally ingests gluten. He gets an instant headache, bloating and severe stomach pain.
“For the rest of the day my system would just be shot,” he says. “Anything I ate after that, my body would reject it.”
Brown remembers having discoloration on her teeth as a child, anemia, and feeling nauseous, all potential signs of celiac disease.
“The first thing I ate when I got back from the hospital was an egg and cheese sandwich on a roll because I love my carbs,” says Brown of one of her trips to the hospital before she was diagnosed. “Little did I know I was killing myself.”
But going gluten free isn’t just about bread and it can be hard when gluten turns up in unexpected places, like ketchup. Gluten is often used to boost protein in low-protein foods, especially processed and convenience foods. Even medications and lipsticks can have gluten in them.
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“I had to get medicine for a sinus infection and I asked if it was gluten-free and the doctor said that even if it wasn’t it’s only a couple of days, it’s not going to hurt me,” says Brown. “But it would hurt me, and even if I don’t feel pain now it’s going to hurt me later. The more gluten I eat, the more it’s tearing my intestines and then the closer I get to having cancer later in life.”
It also takes time for the body to heal from the years of damage that has already been done.
“I could have possibly had this since I was 10 years old,” says Brown. “That’s 12 years I could have had this and not known—that’s a long time.”
The gluten-free diet is also getting attention from outside the celiac community, like those researching autism and dementia. Certain reversible forms of dementia have been linked to a gluten intolerance.
Some doctors believe that like celiac, autism is also an autoimmune disease and some—like actress Jenny McCarthy—claim a gluten-free diet has made a significant difference in, and possibly even cured, their autistic children.
Dr. Vijendra Singh, director of neuroscience research at Brain State Technologies, Inc., and an independent scientific consultant, has labeled this subset of autism as autoimmune autism.
“Autoimmunity is the most extensively investigated topic of research in autism,” he testified before the federal government, urging the Government Reform Committee to look beyond genetic funding for autism research. “This is by and large due to the fact that autoimmunity is the prime target of therapy that has proven to be quite effective in ameliorating autistic characteristics…autoimmunity research, unlike the genetic research, has already significantly improved the health and welfare of individuals with autistic disorder.”
Mary Ellen, of Merrick, who declined to give her last name, has had her 9-year-old autistic son on a gluten-free diet for the past year. She says she sees a difference in his behavior.
“He’s calmer, less irritable,” she says. “Maybe it’s just a coincidence, but if there’s even a possibility it can help, and it’s something dietary that I can do and control, I’m going to at least give it a try.”
But without medical reason, removing gluten from the diet isn’t something to be taken lightly. Vitamin deficiency is a risk on a gluten-free diet, and gluten-free food gets pricey, costing up to more than two times the price of regular items. Since food is not considered medicine, medical companies don’t offer any coverage, and some stores jack up the prices just because they see a new market they can tap.
“It’s not right, but I can’t complain because it’s out there and that’s so much better than it was years ago—as long as it’s out there and I can survive, then that’s really all that matters,” says Brown, who teaches nine dance classes every week. “I dance all the time, because after some of the things I was told, I just feel lucky to be alive.”
Sandwiched between Zack and Miri Make a Porno and Lady Gaga, the Internet trend site TrendHunter.com lists gluten-free diets as a trend for 2009. There is little question consumer interest in gluten-free eating habits—as well as gluten-free products—is growing. Sales of gluten-free foods is the fastest growing U.S. grocery category, according to the Nutrition Business Journal, increasing by more than 18 percent per year.
Gluten, the Latin word for “glue,” is a protein contained in the cells of wheat, rye and barley. It is an important source of nutritional protein, both in foods prepared directly from wheat, and as an additive to foods like sauces and condiments, to boost protein. It gives kneaded dough its elasticity, allows leavening and is a binding agent that contributes shape, texture and chewiness to baked products like bagels and pizza. It is highly incorporated into vegan diets in the form of seitan as it absorbs flavor and has a meat-like consistency. Growth of convenience and fast foods has led to an increased use of gluten as an additive to non-wheat products, with the United States being the largest consumer of wheat gluten in the world. Because of bio-engineering, modern wheat contains almost double the amount of gluten it did a century ago.
For those without a gluten intolerance, gluten is harmless and avoiding it could cause dietary deficiencies. But for those with an intolerance, gluten causes the body to have an abnormal reaction and launch an attack on the body’s immune system.
Because celebrities like Elisabeth Hasselbeck, Zooey Deschanel, Rachel Weisz and Victoria Beckham have gone public with their gluten-free lifestyles, which they adopted either by necessity or by choice, word is spreading about gluten-free products, among those with gluten intolerance, and among fad dieters looking for the next trend.
But because this is a trend that, for some, is a way of life, many wonder whether all the attention gluten-free diets are getting belittles the severity of the actual disease or if it is a move in the right direction for the millions still undiagnosed.
Celiac disease affects 1 percent of healthy, average Americans. That means at least 3 million people in our country are living with celiac disease—97 percent of them are undiagnosed.