*SPECIAL NOTE: The stories I share here are NOT sponsored posts. I invited each advocate to share their stories. There was no fee. This is my personal effort to increase awareness and to increase a collaboration of efforts.
Celiac Advocate Stories
As I shared in my 2020 Celiac Vision post, one of my efforts this year is to add some of our amazing advocates in the celiac/gluten-free community to the personal celiac stories I’ve shared so far. For my second Person Behind the Passion post, I introduce Jessica Hanson from Tasty Meditation: Tales From a Gluten Free Kitchen.
Those in the area might also recognize her as one of the organizers of the NYC Celiac Disease Meetup Group.
It All Started When. . .
Jessica started experiencing stomachaches when she was 17. She didn’t think, however, that they were a sign that something was wrong. They just were. She thought they were normal, that she just had a sensitive stomach. She never thought of herself as “sick.” One stomachache was severe enough to send her to the ER, but she was given a reasonable explanation; it was probably food poisoning.
Jessica was ambitious and directed from a very young age. Starting college at only 16 on talent scholarships for musical theater, she was committed. She knew exactly what she wanted and she was making it happen.
She was obviously busy and she was very active. It only made sense that she’d be thin.
I wonder how often this happens—random symptoms that are just accepted as part of life, being busy, getting older, starting a new job, moving, or any number of other reasons to blame things on. Or maybe we don’t blame them on anything, because we don’t see them as issues at all. While she was thin, for example, I wouldn’t look at Jessica’s “before” picture as someone who looked sickly.
She realizes that she’s fortunate to have been tested and diagnosed when she was.
When she was 23, Jessica’s mom called to tell her she just read about an article about celiac disease. She connected some of the symptoms to her daughter, causing her to tell her, “You should ask your doctor to test you.” (Do you see why I love sharing these personal celiac stories? You never know when connections will be made!)
Her primary care physician referred her to a gastroenterologist who tested her right away. “Ultimately, it was an easy process once I knew what to ask for.” *(Guess what bothers me about that?!— Oh how I wish doctors would see celiac as a potential cause for chronic unanswered issues. Why do so many have to ask?!)
Jessica had other issues (that she didn’t realize were “issues” until later). She was underweight (as you can see in her photo, below) and she experienced damage to her tooth enamel.
A Diagnosis and A Direction
Jessica was 23 when she discovered that her stomachaches weren’t normal. This was 9 years ago. Her blood test came back with antibody levels that were “off the charts.” This was followed by a positive biopsy. Diagnosis: celiac disease.
Her prescription was a simple direction:“Go gluten free.” Follow-up care wasn’t suggested. She does, however, get her antibody levels checked yearly—and they always come back great!
Too often this is the only direction a newly diagnosed celiac patient receives: “Go gluten free.” It makes me wonder how often the journey through having to learn this diet on our own contributes to the passion behind many supporters and advocates. I know that it contributed to mine. There is a need to show others that food CAN be good.
Once she took gluten out of her diet, her health improved. Stomachaches and GI symptoms are (mostly) gone. Dental enamel destruction ceased to get worse.
I asked what she meant by “mostly gone.” She shared, “I have mild stomachaches every now and then that are NOT gluten-related (I suspect that I have an issue with certain FODMAPs, and too much soy definitely messes me up).”
Gluten Free: An Impact Beyond Health
I love sharing the impact gluten free has on health once a person finds out they need to be gluten free. As Jessica shared, however, the impact went far beyond health.
Benefits for Jessica included the things she learned about herself. Having celiac taught her how to be a stronger self-advocate. We don’t always give this “lesson” a positive view, but it certainly is, don’t you think? It is hard for many to speak up for themselves. I know that is a complaint many have (having to make special requests and ask all those important questions) —but the gift that comes with having to work this muscle can be, as Jessica shared, “important for many other aspects of life besides celiac disease.”
She has also learned who is important in her life. “I gave up on some relationships. It was sad at the time, but ultimately I realized that if those people didn’t support me during my celiac journey they certainly wouldn’t support me if I were diagnosed with something even more serious. There’s no room in my life for intolerant and unsupportive people. My health is more important.”
And because of her health, she keeps a 100% gluten-free kitchen. She made a deal with her boyfriend when he moved in: They would keep a gluten-free kitchen and she would bake his favorite gluten-free chocolate chip cookies whenever he wanted them. It must have worked out; they got married!
Another Auto-Immune Disease
As many of us have discovered, celiac likes company. After her diagnosis, Jessica also discovered that she has Grave’s Disease (which causes an over-active thyroid).
This one, as she said, has thrown her for a “loop.” I hope to eventually share a follow-up on how she is doing with that.
Eating Gluten Free
Just like most of us, Jessica found the transition to gluten free “emotional and overwhelming” at first. But, as she said, “When dealt a hand of cards you can either quit or play what you have. I played my hand and quickly became my doctor’s star patient.”
Living in NYC, Jessica is fortunate to have many safe gluten-free restaurant options. She is able to find and enjoy her favorites: Neapolitan-style pizza, tortellini, artisan breads. Is your mouth watering? Mine is.
There are also, however, “many unsafe restaurants that cater to the fad diet.” Jessica continued, “This can make dining out with friends tricky, especially when someone suggests we try a new/unsafe restaurant that advertises “gluten friendly” options.” Yes indeed, this can be (and very often is) very confusing.
Jessica shared, “I choose to vote with my dollar and dine at restaurants that are supportive of the celiac disease community.”
Besides dining out, Jessica loves hosting dinner parties with food that is 100% gluten free, and usually all made from scratch. “I have several friends with various additional food restrictions, and I am always sure to accommodate them and explain how I made each dish. My goal is always to create an inclusive environment so no one feels left out.”
I love how she included that she lets her guests with other dietary restrictions know how she prepared a dish. How often are we presented with a home-made item and told, “it’s gluten free,” and have to wonder “is it really?”
Focus on Life
That time before a diagnosis (which can be years, or even decades) has us spending so much time seeking answers. Being diagnosed and knowing how to treat our health (gluten free) allows more time and energy to focus on: LIFE!
So, what does Jessica enjoy doing with her life? She likes the arts: singing, acting, dancing. She teaches yoga –and she enjoys cooking and baking.
“My cooking/baking skills have definitely improved since going gluten free. I refused to give up that hobby when I was diagnosed, so I learned about the properties of different gluten free flours and began recipe development. It forced me to get creative, and now I’m known among my friends for hosting incredible dinner parties that are 100% gluten free.”
2020 Celiac Vision
I asked Jessica what her vision is for 2020.
“I hope that 2020 is the year the Gluten in Medicine Disclosure Act passes and the year the FDA chooses to enforce their labeling laws and hold manufacturers accountable.
“My personal plan for 2020 is to continue what I’ve been doing – staying up to date on celiac research, scheduling meetings with senators and representatives to advocate for the community, organizing events with the NYC Celiac Disease Meetup Group, and connecting with other gluten free individuals around the world.”
*Learn more about the Gluten in Medicine Disclosure Act HERE, and see how you can make a difference (by writing your representative). This is a BIG deal!
“When I was diagnosed with celiac disease in 2011 I was determined to make a positive change in my life. I didn’t know anyone else with celiac at the time, so I relied on the library and reputable online resources. I searched throughout NYC for the best restaurants that take gluten free food service seriously. I researched gluten free baking techniques, learned the properties of various different gluten free flours, and soon began developing my own gluten free recipes.”
“I had a strong desire to give back to the celiac disease/gluten free community and connect with others, so I began my blog in 2014 – Tasty Meditation: Tales from a Gluten Free Kitchen.
“Why Tasty Meditation? As a yoga teacher, I believe there are many different forms of meditation that have nothing to do with closing your eyes and chanting. Baking relaxes me.
“After a long day I can often be found in my kitchen whipping up a batch of cupcakes. I find it comforting to know that A + B + C = cake. Thus, Tasty Meditation was born. In order to further connect with the community.
“I also began volunteering with the NYC Celiac Disease Meetup Group (the largest gluten free Meetup group in the world) and became an Organizer in 2015.”
Throughout the years my advocacy has focused on both science and the personal side of celiac disease – gluten free testing, health care, the FDA, relationships and dating, inclusiveness, event planning, and more – I talk about it all with openness, passion and a bit of humor.
Be sure to check out Jessica’s website: Tasty Meditation.
(also be sure to connect with Tasty Meditation on Facebook, Twitter, and Instagram)