Web site: http://glutenfreebaltimore.
Year started: 2008
How it started:
I'm a fan of traveling, and for many trips in the first few years of traveling, I would pack a cardboard box of my gluten-free foods, and carry it with me as my carry-on item on the plane. I would stay at hotels with a kitchenette and prepare my own meals. This became cumbersome, especially after late 2001 with the restrictions on carry-on items. I had already been receiving weird looks prior to Sept. 11th, but the questioning after was just too much. Chicago is one of my favorite places, so before one trip, I decided that people diagnosed with Celiac Disease in other cities must be able to survive, so I searched on Google for various information regarding where I could get gluten-free products in Chicago. Sure enough, I found a plethora of information. From that point forward, I never felt the need to carry a cardboard box filled with "my" food again. I was still staying in hotels with kitchenettes, but I was purchasing my food when I got to my destination. Based on my first Google search for Chicago, it seemed to me that Chicago offered a much wider selection of gluten-free friendly resources than Baltimore did: restaurants with menus offering gluten-free items, as well as grocery stores with entire sections dedicated to the gluten-free shopper. From this trip forward, I always performed a search on Google for "Gluten Free in [insert name of travel destination here]" Amazingly enough, this type of search almost always would bring up blogs, websites, restaurants, and other destination-specific information for someone in my shoes. I no longer felt the need to stay at hotels with kitchenettes. This was a big moment for me.
Now, I'm a big fan of traveling, but I'm also a fan of realizing just how much I love my hometown of Baltimore when I return from a trip. I couldn't imagine what it would be like to travel to Baltimore because it always felt pretty hit-or-miss for me when it came to food. I often found myself at a grocery store eavesdropping on other shoppers when I realized that the confused looks on their faces was because they were trying to decipher whether a product was gluten-free or not. I regularly would interrupt their shopping to ask if they were Celiac or looking for gluten-free products. I also started asking after seeing someone place a product in their shopping cart that no one other than someone diagnosed with gluten intolerance would purchase. After I realized this was becoming too much a part of every shopping experience (I've lost count of the number of people I ended up almost shopping with.), I figured why not take to the internet and provide information to those in Baltimore or traveling to Baltimore?
In addition, I found myself being the go-to person in my circle of friends, family, and co-workers when anyone heard the words gluten or Celiac, and would write pretty much anyone (if I was given an email address) with advice. That became my first post.
Where do you usually find out medical news about Celiac?
Where do you usually find out about g-free foods or restaurants?
I'm also a slow shopper at grocery stores. I've become a fast label-reader, and I can spot a "gluten-free" symbol or note on a label as though it were slapping me in the face. I guess it comes with time and experience. Right now we're in a time when "gluten-free" is in its heyday. For some reason, that's incorrect at best, going "gluten-free" is like the new South Beach Diet. This is good and bad for those who are actually gluten-intolerant: It's raising awareness, but it's lowering the predictability of whether something is truly 100% gluten-free. For those with Celiac Disease, even trace amounts can be harmful; however, for those just "going gluten-free" as part of a new "fad" diet plan, trace amounts are not going to register with the body. The problem with the new "fad" is that unfortunately, the gluten-free diet can be highly unhealthy for those who can tolerate gluten. Gluten-free products are typically much higher in fat, and have far more calories that their mainstream counterparts because of the need to make them palatable. Just take a look at the differences between the nutritional labels on a gluten-free loaf of bread and a mainstream loaf of bread. You'll also want to compare the size of the slice: The gluten-free slice is going to be much smaller, which is going to affect the nutritional values as well.
What role do traditional media outlets (newspapers, radio, TV, including their online homes) play for Celiacs? How would you describe the role of social and online networks to the Celiac community – be it in person, e-mail groups or other online connecting points?
It's become very clear that, in general, traditional media outlets are falling prey to the new blog-o-sphere and social networking communities, where anyone is a journalist, pundit, or entertainer -- which of course causes problems in its own right if you aren't a critical reader.
For those with Celiac Disease, however, this is perhaps one of the best things that could happen because Celiac can feel like a highly personal journey, which it actually isn't. The blogs are actually quite repetitive in the stories they tell. They are reinforcing a journey that many take when they are given their diagnosis: the years of undiagnosed medical problems, the experience with gluten-free bread for the first time, the first (3 hour) grocery shopping experience, the first time going to a restaurant with family, the first time going to a restaurant on a date, the first travel experience, finding a gluten-free product that actually tastes good. These are all part of the Celiac experience, and the blog-o-sphere tells these stories and connects people in ways that couldn't have happened in the past. Support groups can't offer the 24-hour level of support that your favorite blog offers.
The Celiac community grew with the Facebook explosion, where groups were made and connections were forged almost overnight. These are the new support groups. Just for the record: I've attended one Celiac disease support group at a local Baltimore hospital; it was dominated by people in their sixties and seventies. At the time, I was in my late teens, so I certainly felt out of place. I could be considered a late entrant into the Facebook world because I was in my senior year of College when Facebook really took off with its target to connect college students, but I didn't join up until a few years later when it had seeped into high schools and then stayed with college graduates. From what I can tell, it seems the younger generations are exiting Facebook, as they see their parents getting on board. I don't know what this means for the Celiac community, but what I think is happening is that people are becoming more willing to interact with each other offline. They've become comfortable with the idea of interacting with strangers online, which is giving them more confidence when they're offline. It's a good thing for the Celiac community (not a good thing for younger children who don't have the correct social tools and filters!)
Doctors, unless Celiac themselves, can't tell you that you may cry after your first shopping experience and/or first bite of that drywall-like bread. The traditional media outlets appear to be reporting on the new "gluten-free fad" but I don't think people truly understand until they become part of the Celiac community -- be it as a Celiac or as family or friend of a Celiac.
Elisabeth Hasselbeck may have brought Celiac Disease into the traditional media outlets' radar, but the responses to the way in which she brought it there are inconsistent. Some praise her; some are highly critical of her and believe she did the Celiac community a disservice by marketing Celiac Disease as what I will call the "make all your tummy problems go away" disease. (I guess you see which side of the fence I fall in the debate over her influence.)
Can you give an example of how finding useful information on this topic has changed over the years?
When I was first diagnosed there were three basic sources that I used: - My primary care physician (who tested me because he had just read a journal article about it, and what the heck, I was getting blood drawn anyway),
- http://www.celiac.com (for all medical information), and
- Dr. Alessio Fasano (the worldwide leading researcher on Celiac Disease) at University of Maryland Medical Center, who I worked with for a Senior High School Independent project.
Google has transformed the way we find information, and, is my primary research tool. I'm a Google-addict, especially Google Scholar. I'm probably unlike most, as I will click through up to 20 pages of search results when looking for information. I'm also a big fan of figuring things out on my own: recipes fail, unfortunate amounts of money have been thrown away on products that were just disgusting, restaurants can't accommodate a gluten-free diner, and people will still say "Oh, just go off the diet for today," not realizing that might cause three months of discomfort and unpleasant symptoms, not just one day not dedicated to losing weight. But, I'm feeling better, and each day that I discover something new, or help someone with Celiac disease, is another step in the right direction.
