Jan 30 2014
My Gluten-Free Journey Through The Rivers Of Celiac Disease
By Kirsten Berman, Buzzworthy Blogs
Let me start by saying that the seven years leading up to my celiac disease diagnosis was a rough beast of a ride. Finally knowing what was wrong changed not only my life, but gave me the opportunity to help so many others. It turned out to be the best thing that could have happened.
So what triggered my celiac after years of being dormant? No one really knows. I ate pizza, drank beer, indulged in many a wheat item for most of my life and felt just fine … until, one day, I didn’t anymore.
If I had to make a guess, I would say it got triggered in 2003 while living in Guatemala and fighting an awful infestation of E. coli bacteria. My body was never quite the same after that.
Saying that those pre-diagnosis years were a rough ride is putting it mildly. Some days I would be so sick with vertigo, nausea, migraines, and a slew of other unexplained symptoms, I couldn’t even get out of bed. Vertigo was by far the worst symptom, but I also had constant dizziness, brain fog, stomach aches, bloating, cold sores, hand tremors, lack of balance, numbness in hands and feet, poor blood circulation, restless leg syndrome, and incessant bad moods where I would wake up angry and go to bed angry … Ugh, I get tired just typing out that list.
It is crazy to think back and imagine how I lived that way for so long. Luckily, I am only reminded during the far and few between moments when I have the unfortunate luck to “get glutened.” Gluten is actually composed of two different proteins: gliadin and glutenin, and it affects the elasticity of dough, which gives wheat bread its chewiness.
The whole situation seemed hopeless until I stumbled upon a focus group in Los Angeles in November 2010. They were testing a new dietary lifestyle with exercise called “7 Days to Slim Down.” They would prepare all my meals for seven days and deliver them. I also had to attend a spin class every morning. I had no idea how I was going to get up to exercise when I could barely motivate myself to shower, but somehow I did it.
By the middle of the week I was thoroughly exhausted, but that was because of the spinning workouts. By the end of the week, I felt like a new person and I was confused. It surely couldn’t have been the exercise that made me feel better; I had tried that before.
No, it turns out it was the food. I had unknowingly been fed a gluten-free diet, which, interestingly enough, wasn’t what they were striving for; the menu just turned out that way—with whole foods and vegetables.
One of the other women in the focus group heard me talk about all my issues and symptoms, and suggested I check out information on celiac disease, so I did. I got tested and sure enough, bam—that is what I had. It finally had a name, and the way to “fix” it was by following a strict gluten-free diet.
I had been sick for so long I didn’t know what to do with myself. So I went to Vegas with some friends and had the best weekend in years. I celebrated my return. It never occurred to me to be sad about the food I couldn’t eat or how hard it was going to be. All I could focus on was how amazing I felt and I wanted to tell anyone and everyone who would listen.
This is where my advocacy for celiac disease awareness and spreading the word began. I created a Facebook page called Gluten Free Guide to Life. I dove into celiac research and gluten-free living with complete abandon. I taught myself how to bake gluten-free and learned how to stay gluten-free. I read labels and learned about the “hidden” wheat lurking in foods and products I hadn’t even considered.
I shared all I learned and created my first Twitter feed, and then another and another until finally GlutenFreeGal.com was born. The launching pad for all my research and rants sprang to life.
Celiac and gluten sensitive sufferers still cannot eat in a world where gluten-free foods are increasingly popular without the fear of getting sick. How is that for irony?! I have made it my goal to change that and to change the American food system as a whole. No small feat, but neither was the fight to give women the right to vote or ending slavery. Food made me sick. Food is making lots of people sick these days, but it seems that so few want to believe that food could be the root cause of so many ailments, diseases, or lingering mental issues like depression.
The average American ingests up to 60,000 pounds of food in his or her lifetime and, despite popular belief, 80 percent of serotonin is not produced in the brain but in the gut. Serotonin is involved in:
And let’s face it, it’s not like most people are eating those pounds in healthy ways. If you feed your car bad oil consistently and neglect the basic maintenance, it will break down and eventually stop running all together. The same goes with what we put into our bodies.
Our shelves are filled with processed yuck: GMOs, additives, sugar, and many more ingredients we cannot even pronounce. Those lists seem to get longer and longer as the food gets cheaper and cheaper. If we do not demand better food, companies will keep cutting corners with complete disregard for our health. So my advice is to eat real food and to care about labels and ingredients.
My advice to gluten-free-ers: always read labels. If you can’t read labels, then ask questions. If you do not get the answer you are looking for then don’t eat it. One of the most dangerous things is to assume something that doesn’t have gluten in it and then have to deal with the aftermath.
Also, having celiac disease or being gluten sensitive is nothing to be embarrassed about. I have seen the roll-of-the-eyes plenty of times when ordering out or with family. I have heard my stomach grumble when there is nothing I can eat and have conveniently forgotten my snacks. There have been plenty of jokes on the issue, wrong information given, and many a company trying to make a profit off this new billion dollar industry.
The truth is, we are not living off the farm anymore. Our bodies know it and are having a hard time adapting. One of my favorite quotes is from Sayer Ji, author, researcher, lecturer, and advisory board member of the National Health Federation: “View celiac disease not as an unhealthy response to a healthy food, but as a healthy response to an unhealthy food.”
Change starts one person at a time, and that person is me and that person is you.
Kirsten Berman is a GlutenFree Consultant, Blogger, Social Media lover, and above all, an advocate of labeling and eating real food. Her goal is to create awareness and understanding about the declining state of the American Food System. She provides one-on-one coaching and consults with local restaurant owners and their staff about cross-contamination. She shines the light on the cracks in the floor that Celiacs fall through daily. This native from Chicago now resides in Los Angeles and loves gardening, cocktails, great food, crime novels, research, and football.
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