May is Celiac Awareness Month. For my part, I'm GIVING AWAY electronic copies of my new cookbooklet, So What CAN You Eat? Gluten-Free Paleo Vegan (mostly) Recipes for Health and Weight Loss. (It'll be for sale at the Amazon Kindle Store later today.) It has 19 fast, easy, nutritious, gluten-free recipes plus tips and strategies to support healthy living.To receive a copy, sign up for my mailing list at the home page of the website and you'll receive an email with the link for the download. In addition, I will be doing a guest "blog" later in the month at http://iamjtheblog.wordpress.com/. More details to follow.
Also in honor of Celiac Awareness Month, I invited GFDougie to write my first ever guest blog post. Dougie and I met via Twitter. His celiac history is very different from mine and his story of being a non-compliant celiac kid gives me empathy for my own kids who are growing up with their own special variety of "different."
Good day to you. I’m going to take you on a personal journey of the how and why a kid blatantly cheats with gluten while having been diagnosed with celiac disease. I hope this personal journey will help you understand what you can do to help support and educate a celiac kid live gluten-free; and likewise, a celiac kid to gain the mental tools of fortitude and strength to obtain the courage to lead a gluten-free lifestyle.
At the time of this writing, I’m in my 40’s. Where has the time gone? It seems just yesterday I was a kid in Elementary and Middle School! A kid that was diagnosed with celiac disease at just under the age of six – quite a remarkable short time-frame for United States’ celiac disease diagnosis average!
It is yesterday and I remember the slamming of the locker doors, the blackboard and the chalk, and the lunch room smells. Oh the lunch room smells – a mixture of putrid yet palatable flavors hanging in the air. Being a celiac kid, I of course brought my lunch from home. The usual fare is peanut butter and crackers, an apple, and Kool-Aid. Oh there were other variations of lunch from home, but this one stands out as I usually started gagging the second cracker “sandwich” down as the crackers were so dry. I remember being tired of living as a kid with celiac, being different, and being made fun of for the strange lunches I brought to school. How do I fit in better with the other kids? Cheat and eat wheat! I’m no longer different as I eat “mystery meat,” cheese pizza, chicken-fried steak, yellow cake, and peanut butter cookies. Even though I ate breakfast at home, breakfast at school is better! Honey Grahams brand cereal is a favorite of mine. Because I’m eating like them, I’m included with the other kids now. I’m accepted.
I remember cheating with gluten in spurts throughout my young life. Why? One major factor was social acceptance. Social acceptance and peer pressure among kids are a strong force to reckon with. Differences are not tolerated and are made fun of. Conformity with other kids is the on-ramp to the highway of acceptance. Another major factor was convenience. Convenience and gluten-free mealtime do not equate. It’s just a fact of reality. Special foods can’t be picked up just anywhere, enduring the pre-assembly of food combinations so dry items don’t get soggy, and eating everything homemade instead of from the vending machine like everyone else. A third major factor is the quality of the gluten-free food. To say the least – crumbly and grainy texture, bland flavor, and sub-par food product structure are nice words and phrases to describe gluten-free food at the time. Why go through all this mental upheaval and hassle when a normal meal is waiting for me at the school lunchroom counter?
As a celiac kid in K-12 public schools, I was not as educated as thoroughly as I should’ve been in regard to what celiac disease actually is. As a kid, I just thought gluten got trapped in your small intestine and other nutrients didn’t get absorbed as a result of the gluten being trapped in the small intestine; yet if I ate salads and other fiber and roughage, the gluten would get “scraped off”my small intestinal walls. While the former part of the last sentence is true, the latter is definitely not! This thought process, however, gave me license to continue my cheating ways with gluten throughout my childhood.
A celiac kid has a lot of hurdles to overcome to successfully eat gluten-free. Of course there are the physical environment and the education hurdles of celiac disease. Just as a celiac adult has to watch out for gluten cross-contamination and ingredients, celiac kids also have these same hurdles. Other hurdles are the psychological and the emotional ones for celiac kids. Taking on the grown-up responsibility of managing a gluten-free diet as a celiac kid is a very tall order. A very strong sense of discipline, high self-esteem, and education of what celiac disease is needs to be instilled in the psychological and emotional make up of a celiac kid. In my opinion, I don’t believe I received these mental tools early enough in my childhood. That said it’s never too late to learn these tools and apply them in relation to a gluten-free diet no matter what the age of the celiac person.
As a postscript, I would like to state for the record I do not advocate cheating on a gluten-free diet if you have been diagnosed with celiac disease at any age. In my experience, I was lucky (or unlucky) not to have experienced some of the debilitating symptoms one can have in regard to celiac disease. Sure, I had constipation, diarrhea, and other symptoms, but at that time in my life those celiac disease symptoms didn’t seem serious enough to permanently stop me from ingesting gluten. My most apparent symptom in regard to celiac disease at that time was Dermatitis Herpetiformis (DH). Even that celiac disease symptom wasn’t enough of a deterrent for me to stop ingesting gluten at the time. That said today I’m a healthy, gluten-free celiac disease survivor. I’m thankful for each day I survive gluten-free. My mantra – Gluten-free one day at a time! I'm learning.
Research, educate, and advocate all celiac and gluten-free – and Celiac Disease Awareness for May.
Peace be with you.
Diagnosed with celiac under the age of six years old, Dougie has had a lifetime of learning to live gluten-free. He spent many years on the fringes of gluten-free compliance. Now in his 40’s, Dougie has learned a lot in regard to symptoms, hidden ingredients, and what “not to do” in regard to living with celiac and being gluten-free. He is a regular as GFDougie in the gluten-free Twitter-verse, offering tips, advice, support and encouragement. His blog, Gluten Free Tip also offers successful hints, recipes, and products in regard to celiac disease. Read is full bio here.
I asked the Celiac Listserv recently if there was a go-to pasta like Udi's is the gold standard for gf bread. I got this empassioned response:
"My favorite is no longer Udi's. Kinnikinnick came out with a whole new bread line last month and it is by far superior to Udi's. The bread slices are a normal loaf size (for the same price) and the texture is truly akin to regular wheat sandwich bread..the difference between a Udi's sandwich and Kinnikinnick's are polar opposites. Kinnickinick got it right and it is an amazing product. The hamburger and hot dog buns are soft and not dense PLUS they truly hold together to the last bite. We cried when we had hot dogs on their buns with all the fixings and the bread didn't crumble, it was the exact size as the hot dog, didn't leave you feeling like you had a mouthful of typical dry, heavy, mealy gluten free bread and it was soft enough to allow you to actually bite into the hot dog.Brought back all the memories of pre-gluten free days."
Wow! Now that's a recommendation! When I need to buy my next loaf, how can I NOT try Kinnikinnick?
Before I got the celiac diagnosis, Seven Stones was one of those places I was pleased to have discovered and I introduced a number of friends and family to it. After diagnosis, I worried that I couldn't eat there, and frankly I didn't for more than a year. They don't appear in UrbanSpoon as gluten-free friendly, they aren't on the restaurant list of Gluten Free Philly, and so the only thing that gave me hope was their own blog/web post about their gluten free spinach and cheese quiche with corn tortillas for a crust from December 2011. Intrigued, I called them up the day before I wanted to go. I didn't want to get there only to discover that it was a seasonal thing that they didn't have any more. On the contrary, the woman who answered the phone confirmed that they not only have the gf quiche, but they also have gf soups and can make any of their sandwiches on gf bagels or bread.
Eureka! I invited my friend Lori to join me for lunch/brunch the next day, a Sunday. The day was quite rainy and their albeit dining room was packed, though we did eventually get a table. I did my usual gf inquiry/interogation of the people behind the counter. Since they make the sandwiches in the back where I can't watch, I asked if they are familiar with techniques for avoiding cross-contamination. The counter person helping me seemed a little stumped, but a man who had been in the back overheard the question and confirmed that they do indeed keep and prepare the gf sandwich fixin's in a separate location. [The place looks fairly small back there, and my confidence wasn't that high regarding the segregation of gluten from non, so those of you who are extremely sensitive will want to evaluate it for yourself or steer clear until more canaries go down the mine.] I eventually decided to try the lentil soup for right then -- the weather that day totally called for soup -- and I ordered a piece of the quiche to go.
I was pleased with the soups (Lori graciously let me take he picture with food AND she let me try her veggie soup too) -- warm and comforting and filling and very much like soup I would make. Not amazing, but tasty nevertheless. I split the quiche from my partner later in the day (my half with salad pictured below). She knew it was gf but not that it was a corn tortilla. We both liked the quiche (and I liked that it came with a generous portion of green salad), and my only suggestion for modification would be to play up the tortilla thing and give it some Mexican spices and maybe throw in some pepper and tomatoes. Since I totally plan on trying the tortilla-as-quiche-crust thing, I know that's what I'll do.
So YAY! for an inexpensive, low-key, drop-in sort of place for gf fare in Media! I am happy to be able to reclaim it as one of my favorite places to go. Thanks Lori!
"We teach best what we most need to learn." Richard Bach, Illusions. I guess that is the SHORT short version of why I'm doing this.
I know it may puzzle people who know me that I am spending my free time on this gluten free thing. And before I got diagnosed with celiac, I would have thought so too. I remember a conversation with our pediatrician 9 years ago when talking with her about our older son's mild reflux issues. She mentioned celiac and I made a face and said something enlightened like, "Isn't that pretty weird and rare?" She said no, not that rare (she ignored the "weird" comment), but because we didn't have any other indications that he might have gluten issues, we didn't pursue testing. [My son, now 10, and I are not biologically related and he has no symptoms of celiac, FYI.]
And is my way, once I got diagnosed, I began a steep learning curve on how to live gluten free and about the disease itself. What I found is that it's a way bigger deal than most people think it is, and it looks like it's only going to get bigger. (More about that in a minute if you want a deeper dive.) But what's the big deal anyway? So you have an upset stomach, so what? Well, for one, "upset stomach" doesn't begin to approach the severity and host of symptoms that some people experience. For two, untreated celiac can open the door to a whole host of conditions and illnesses, including cancer, which can make your life miserable and shorter. That's the big deal. If you have celiac, go gluten free, feel better, live longer. If you have any reason to suspect you might have celiac, talk to your doctor and ask to have the antibody tests for celiac that may indicate a need for further testing. Go here to see a symptoms checklist.
Before I got the celiac diagnosis, I was interested in helping people adopt strategies that would increase their general level of happiness. Since diagnosis, I've met and interacted with lots of people with celiac in person and in the cyberworld who could really use some techniques to get happier. This is supported by research that indicates that people with celiac, especially women, are more likely to be depressed and anxious.
So that's the point of my quest to help others be happy, healthy and gluten free. Keep reading if you want the numbers.
The number of people needing to live gluten-free is exploding. 1 in 133 Americans are diagnosed with celiac, many more are gluten-intolerant, their caretakers add to the ranks of people who assist with their meals, and many more people will be diagnosed in the near future as information about celiac and gluten intolerance increases testing and diagnosis.
In the United States, celiac disease is a genetic disease that affects at least 3 million people. That's 1 in 133 (for comparison, that's more than twice as many people as those who have Type I diabetes). But the number more than doubles if you have any symptoms (and there are LOTS of symptoms that you wouldn't necessarily connect to a GI issue), and the incidence of celiac is 6 times higher if you have a relative that has it. And what's more, researchers studying a population of both symptomatic and non-symptomatic people found that 60% of children and 41% of adults diagnosed during the study were asymptomatic, meaning that they would have had no physical reason to seek out testing. (Source: A multi-center study on the sero-prevalence of celiac disease in the United States among both at risk and not at risk groups. Fasano et. al., Archives of Internal Medicine. February 2003.) If you add in the number of people who are gluten intolerant (which means that they have symptoms but haven't tested positive for celiac) and the number goes up from there.
What's more, the time it takes for a symptomatic person to be diagnosed with celiac disease in the US is four years, increasing that person's risk of developing other autoimmune disorders, neurological problems, osteoporosis and even cancer. (Source: Characteristics of adult celiac disease in the USA: results of a national survey. Green, P.H. et.al. American Journal of Gastroenterology, 2001, 2006.)
And what about the Happy part of my equation? There are numerous studies that indicate that people, especially women, with celiac are more likely to be depressed and anxious than the general population even after they have gone gluten free. (Source: Future issue of Journal of Chronic Illness. Josh Smyth.; World J Gastroenterol. 2010 Jun 14;16(22):2780-7. Häuser W,; Janke KH,; Klump B,; Gregor M,; Hinz A.)
Here's to your good health and happiness!
This is my mom and dad and my grandparents in 1959. Since celiac is genetic, at least one person in this picture also carried the gene and may have suffered with a whole host of related symptoms for years. Fortunately awareness is on the rise, testing is getting better, and I'm confident that diagnosis and the time it takes to get a diagnosis will improve drastically in the years to come.
I'm sharing a link to a great short article from Lauren-Lucille aka The Celiac Diva on staying gluten-free at home. And you can watch my YouTube video for my real-life solutions. Happy Friday, and safe eating!