I’m Gluten Minded: The Celiac Disease Advocate

Kirsten Berman

Names: Kirsten Berman

Location: Sherman Oaks, California

Tell me a bit about yourself.

As for my occupation, I do a myriad of things. I am the “GlutenFree Gal” and am passionate about reaching optimal health and helping others do the same. I was diagnosed with celiac disease at the end of 2010 and realized the need to enhance understanding about gluten, celiac disease and the hidden wheat lurking in our favorite foods. I help people discover how being gluten-free can fit into their lifestyles, provide one-on-one coaching and consult with local restaurant owners and their staff about cross-contamination. I provide meal plans that fit into specific budgets, create easy recipes and give general knowledge of what gluten-free and celiac-safe means–and the difference between the two. I have made many food mistakes along my celiac/gluten-free journey so I want to help others make better decisions along their own journeys.

Why are you gluten minded?

Before I was diagnosed, I had been slowly getting sick for five years. By 2008, my decline picked up pace. By 2010, I was horribly sick on a daily basis with any or all of the seventeen symptoms that eating gluten created. All I could think about was downing a bottle of pills. No one could diagnose me.

I had had vertigo since 2003 that never went away, general dizziness, extreme fatigue that kept me in bed or on the couch for weeks, migraines, body aches, allergies, cold sores, numbness in my fingers and toes, diarrhea, irritable bowel syndrome, vomiting, negative changes to my attitude, weak hair/nails/teeth and more. I knew I couldn’t live like this but had nowhere and no one to turn to.

How did life change after you stopped eating gluten?

Finally, at the end of 2010, I stumbled upon celiac disease when I joined a diet focus group called Seven Days to Slimdown. The program prepared your meals three times a day and incorporated a daily exercise program. By the end of the week, I felt like a new person and almost all of my symptoms had dissipated. It wasn’t until the dietician explained to me that they had been using a gluten-free diet and advised me to check out celiac.org that I had even heard of such a thing. That diet and celiac.org saved my life. Whenever I get glutened now, it blows me away that I had lived like this every day for so long and reminds me what a strong woman I was and am.

It’s important to know what you put in and on your body. I do anywhere from 10-15 hours of food and environmental research a day and sometimes I wish I didn’t know as much as I do: things companies put in products that are poisonous, toxic or just down right gross and how they try to hide it for financial gain. Through my knowledge, I am able to enlighten those around me.

What is the most challenging part of the gluten-free lifestyle?

I would have to say the most challenging thing about being gluten-free is trying to educate people about the difference between gluten-free and celiac-safe. There are many gluten-free products out there that are not celiac-safe. Gluten free products can contain up to 20 ppm gluten. This minute amount of gluten is enough to elicit a reaction in some celiac patients. So, it’s extremely challenging to trust the safety of what I am eating.

Every time I go out to eat, I know that cross-contamination could happen. This is frustrating and scary. Not to mention it doesn’t make dating very easy! Plus, there are new findings coming out all the time about foods that may be problematic for celiac patients such as coffee and mushrooms–two of my favorite things. I almost always cook and eat at home. Again, not so fun on the dating scene.

What is the best thing about being gluten-free?

The best thing is how I feel and how being diagnosed with celiac disease has changed me for the better. I have a new life and new career that I could have never imagined.

Are there any gluten-free websites or resource you value?

To name a few, websites I like include naturalnews.com, celiac.org, julesglutenfree.com, theglutenminded.com and glutendude.com.

What is your favorite gluten-free food?

My favorite food is and will always be french fries! But I love the gluten-free shrimp egg rolls from Feel Good Foods and everything at Rising Hearts Bakery in LA, which is one of the only dedicated gluten-free facilities here.

Do you have any words of wisdom to share with the gluten minded community?

My words of wisdom would be to always, always check labels! If you can’t read labels then ask questions and if your questions can’t be answered then don’t eat it. Until there is a general understanding of the seriousness of this disease, and a distinction is made between gluten-free and celiac-safe, we will remain under the guise of a fad. There is a long road ahead, but I was put on this road for a reason and I am not going anywhere.

My goal as an advocate is to shine light on the cracks in the floor that celiacs fall through daily. Many companies are jumping on the gluten-free bandwagon, but celiacs still cannot eat gluten-free food without the fear of getting sick. I would like to change that through blogging, educating, spreading the word and creating a strong celiac presence so we can speak for ourselves and redefine celiac-safe.

You can find Kirsten at glutenfreegal.com on her Facebook page GlutenFree Guide to Life and on Twitter at @kirsten__berman and @raisevoices.