100 Days Without Gluten: Day #16 - A Confusing Disease

My friend sent this article to me and it brings back so many memories of my youth:

Jacob Rosenblum, 13, used to take peanut butter and jelly sandwiches on whole wheat bread to school for lunch. Then he learned that the gluten in the bread was making him sick. Last fall, he was diagnosed with celiac disease — an autoimmune condition that afflicts about 1 percent of Americans. Experts say it is likely that a few million people have the disease but don't know it.

Symptom Checklist

Bloating and abdominal pain are common symptoms of celiac disease. Increasingly, experts have identified a broad range of additional symptoms that include hair loss, fatigue, canker sores, itchy skin rashes, and tingling in the hands and feet. A blood test is used to diagnose the condition.

Expanding Options In Gluten-Free Cooking

Since Jacob was diagnosed in the fall of 2008, the Rosenblums have restocked their pantry. Jules Gluten-Free Flour has replaced Bisquick, and they use it to make the traditional Toll House chocolate chip cookies.

The Rosenblums have tried lots of new recipes. Recently, they've been turned onto red quinoa — a nutritious, protein-rich grain that is gluten-free. Jacob's father, Jay, tried a new black bean, cilantro and quinoa recipe from Bon Appetit recently. Jacob says the grain is similar to rice, but it has a funny texture and flavor.

"It's more tough, and it has a more of a bitter flavor," he says. "But it's still good." He says he eats a lot of corn- and potato-based foods.

"Utz chips are gluten-free," he says, as he points to the labeling on the bag. For lunch, his mom, Robin, reheats leftovers and packs them in a thermos. If they're in a rush, Jacob says, pocket sandwiches by the organic food company Amy's are easy to take and heat up.

Diagnosis Is The First Step To A Solution

Jacob used to have excruciating stomach pains. During seventh grade, he remembers dashing off to the bathroom during tests. "Then I had less time to take the test." And after sports practices, he'd come home doubled over in pain.

At the time, his family had no idea the pain was triggered by eating gluten — a protein found in wheat, barley and rye grains.

"It got to the point where I had to miss sports practices and games because I was so sick," Jacob recalls. "It was really painful."

His mom says that, in hindsight, she recalls Jacob having bouts of stomach problems. At one point, she'd suspected he was lactose intolerant, but the symptoms always seemed to pass. When she took him to the pediatrician, she was nervous.

"I thought there was something seriously wrong," she says. She had read about celiac disease on the Internet after searching around for clues. "It was in the back of my mind, so I mentioned it to the doctor."

At the time Jacob was being tested, she didn't know her husband carried the genes for the disease. When Jacob's blood tests came back positive for celiac, she was surprised.

The day after Jacob's diagnosis, she got a little teary in a grocery-story aisle after realizing how many foods contain gluten. It's not just breads and baked goods: The list includes soy sauces, salad dressings and many other processed foods. It stressed her out, but she says she realized pretty quickly how lucky they were.

"I was elated," says Robin. "There's no medicine, no surgery." She said it was such a relief to know he could get better by changing his diet.

Diagnosis And Diet Changes Lead To A Quick Recovery

Jacob's turnaround was quick. Once he gave up his peanut butter and jellies on whole wheat, along with his breakfast cereals and pasta, he says he got almost immediate relief.

"Within like one or two weeks of going gluten-free, I didn't have any symptoms I had before," Jacob says.

Experts say this quick recovery is typical.

"In about 90 percent of patients, they get almost complete relief of whatever symptom they came in with — anything from hair loss to fatigue to diarrhea," says Dr. Daniel Leffler, who directs celiac research at the Beth Israel Deaconess Medical Center.

"With diet alone, the symptoms can really be almost completely ameliorated."

The symptoms of celiac disease overlap with many other conditions, and the symptoms come and go. In many instances, stress brings on an episode of intense symptoms. These factors help explain why people with celiac disease endure an average of 10 years of symptoms before getting the right diagnosis, according to the National Foundation for Celiac Awareness.

The Consequences Of Not Treating Celiac Disease

People with celiac disease have a hard time absorbing nutrients, and they are often fatigued due to anemia. The disease damages part of the small intestine called villi, which are absorptive, finger-shaped projections that line the intestine. Damage to the villi can put untreated celiac sufferers at higher risk of osteoporosis, diabetes and the onset of other autoimmune diseases, according to the celiac foundation. There is also evidence that untreated celiac disease may increase the risk of some cancers.

100 Days Without Gluten - Day #9: Quiche In Canada

It's a lovely Saturday morning and I've got a lot to get down before everyone else rolls out of bed and starts texting me to come out and play. I'm at Petals Panache in Wilton Manors, which houses the main office for Stonewall Street Festival, my newest volunteer endeavor. I've volunteered to coordinate the parade for Saturday night and the vendors for the Sunday festival. The event is only 17 days away and the coordinators I've replaced haven't really done anything so I'm using my weekends to play catch up.

I get through most of the morning and afternoon fueled only by determination and Redbull Cola but now I must reluctantly take a break to nourish my body. I wander over to That Place By Alibi where they make those smoothies and salads and such. I order my usual, grilled chicken caesar salad with a scoop of carribean chicken salad on top. It's delicious. Exactly what I was craving. 20 minutes later, I'm in the bathroom throwing it up. I had forgotten that creamy caesar dressing uses gluten as a thickening agent. Hopefully, I won't make this mistake again.

I go home to sleep off the excitement of the day and then decide to head to Montreal, aka Palm Beach Gardens, to hang out with the latinos. I forget to have dinner so I spend a good portion of the trip praying to the baby Jesus that these Puerto Ricans like to eat. I'm in luck and there is a very delightful spread of hummus, crackers, wings, and my all time favorite, mini quiches. I figure, I don't really know many people here so I might as well just release the fat girl and hunker down at the food table. A dozen chicken wings and a platter of mini quiches later, I'm feeling a little strange. Damnit, I think to myself... quiche has crust, crust has gluten, gluten is bad.

I'm pretty good for the rest of the night, the red wine helped, and surprisingly feel decent the following day, the mimosas helped. It wasn't until day 3 when I couldn't remove myself from my bed in the morning for work that I really paid the price for my mistake. As I laid there feeling like Goldie Hawn from Death Becomes Her after she's been shot in the stomach by Meryl Streep, I was forced to add "mini quiches" to the list of delicious things that I will never eat again.

100 Days Without Gluten - Day #3: The Ice Cream Man

I really don't care for the whole organic fad. I figure the pesticides I put in my body on any given day can't be worse than a night out at Johnny's. But now I've got this weird disease to take care of so I figure if I shop at the specialty grocery stores, I'm more likely to find someone that could help me find the things I need to eat. This, in fact, is not the case. I decided to venture to Whole Foods today to get some staples: rice pasta, salad, cheese. I'm standing in the cheese garden, what I call the entire corner that is devoted to mostly cheeses that I have not only never heard of but never want to try. Just gimme a block of mozzarella and a Will & Grace DVD and I'm set for the evening.

I'm standing there reading my gluten propaganda email about cheese, aka Celiac.com's e-newsletter, on my Blackberry and the cheese guy comes over and asks me if I need help. I say, "sure thing" and then explain to him that I can only eat aged cheese. Now, I realize all cheese is technically aged but clearly there is a reason that THE newsletter for Celiacs used the words "aged cheese." He's baffled by this so I try to figure it out myself. "What's the oldest cheese you have here?" Maybe that's what it means. "Um, I'm not sure," he replies. "This one is pretty old." "How old?" I go on. "Well, it's says 5 years here on the label." At this point, I realize that I too am gifted with the ability to read labels and can proceed myself. Twenty two seconds later, I give up, grab a block of munster and pray for the best.

I'm now exhausted from the cheese situation, and trying to remember if rice or a rice/corn combo is the kind of gluten-free pasta that I like, so I decide to reward myself with some ice cream. I'm about to choose my fattie drug of choice when it clicks that all ice cream isn't gluten-free. I look into the eyes of the Indian guy at Baskin Robbins and know that he'll be no good for a gluten interrogation so I say, "Can I see the ingredients?" He's not happy and says he doesn't know what they are. I propose that they might be on the side of the container. He reluctantly pulls the huge container from it's spot in the case and plops in on the counter. It's made of sugar, sugar, sugar and cream so I'm good to go. I order the biggest size that they have hoping that will make up for the obvious major inconvenience I've caused this gentleman.

As I sit there with my $50 bag of Whole Foods groceries and eat my tub of ice cream, I think to myself, "You're that person." The person who has to ask ice cream guys to show you what's in the butter pecan, the person that has to call out the chef from the kitchen to interrogate him/her on the mystery gluten that might be lurking in the entrees, the person that has to spend the evening deciphering labels in the grocery store.

When I arrive home, I hunker down on the couch with a bottle of Pinot Grigio that I picked up on my excursion and thank the baby Jesus for Will & Grace on DVD.