Be sure to check out the Celiac Advocates page for other Person Behind the Passion feature stories.
*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.
A Connection With Another Celiac Advocate
Besides my health (and everything attached to that health) the biggest blessing I have found from my own celiac diagnosis is in those I’ve met along this journey. I have met so many amazing celiac and gluten-free advocates through these years, each working hard to increase awareness and to support others. I am always humbled to find others with such a need to make change and who possess such a willingness to support others. I met one such advocate last year, Andrea Tucker of Baltimore Gluten Free.
I saw some of Andrea’s posts about a particular event she had last year. When I decided to do something similar (a screening of the film, The Celiac Project) I messaged her and asked if we could chat. And in true advocate form, she was available. With her in Baltimore and me closer to St. Louis, just meeting somewhere for coffee wasn’t an option, but that’s what phones are for. And we had a wonderful conversation! It was so great to chat.
The Passion Behind the Person---It Started With the Thyroid
Of course, a person doesn’t just wake up one morning and decide to advocate for something in particular. An advocate is usually born from a personal impact. So, what impacted Andrea to the point that she became so involved in celiac awareness and support? Here is her story.
Andrea was 38 when she started experiencing symptoms that sent her to the doctor: shakiness, brain fog, heart palpitations, and trouble sleeping. This was the summer of 2010. Tests discovered that she had Graves Disease.
After her diagnosis with thyroid disease, she requested a test for celiac. She also asked her pediatrician to run an autoimmune panel on her daughters. While Andrea’s test for celiac disease came back negative, her youngest daughter’s did not.
Gluten Free For Thyroid
Even though her test for celiac was negative, Andrea decided to remove gluten because of her thyroid disease. She shared that she is just as strict with her diet as she would be if she did have celiac. She also shared that her Graves Disease is now in remission. “While I can’t say with 100% assuredness it’s due to being gluten free, I believe it can only have helped,” she said.
Benefits Beyond Health
“I have met so many incredible people in the gluten free community,” Andrea said. “From families to business owners, to other advocates, to medical professionals, it’s the best part of this journey.” I agree wholeheartedly, Andrea! It absolutely is an amazing benefit!
Support and Health Benefits
Due to the fact that her daughter has celiac, and the fact that Andrea considers herself nonceliac gluten intolerant, their home is completely gluten free. Andrea’s health has improved, as has her daughter’s. She has “shot up in height and gets sick so much less frequently,” Andrea shared.
They have great follow-up care. “We’re lucky enough to be connected to the University of Maryland’s Celiac Center. From the start, we knew we would be seeing them at least annually for antibody and nutritional level follow up,” she said.
Disney---An Annual Event
I have heard over and over how fabulously accommodating Disney is for those who require gluten free. And I cannot help but make the comparisons between the Disney stories I hear (always so positive and amazing when it comes to the safety of the food they offer those with special dietary needs) and hospitals (with story after story of patients who’s gluten-free needs are not safely met, a frightening reality all too often).
“My family is now Disney World aficionados. We visit every year now because it’s one of the truest vacations for us. Every dining venue has safe, gluten free food,” Andrea shared.
A Journey of Support
Andrea is so grateful for the direction this journey has taken her. As she shared, it has opened the door to amazing people she otherwise wouldn’t have met, and experiences she otherwise wouldn’t have had.
“A Health Educator by profession, it’s given me personal connection to the people I’m helping,” she shared.
As the leader of a group for kids with celiac (Cel Kid), Andrea feels privileged to be able to work with so many incredible families through this journey, families that are so “loving and supportive of each other.”
Eating Gluten Free
Andrea’s family maintains a completely gluten-free home. As a health educator, she already knew a dietitian connected to The University of Maryland Celiac Center. She was able to call on her for support. What a great way to start this journey!
Even with such great support, however, the day-to-day conscious awareness, effort, and decision making still takes work.
As Andrea shared, being gluten free is “a constant learning process that requires continual self-education. Just when you think you’ve got it figured out, something changes. I think oats are the perfect example of this. With more and more products using oats and oat flour, it’s imperative that consumers know which are sourced from purity protocol. Thankfully, Gluten Free Watchdog is continually working on our behalf!”
Gluten Free in Baltimore
Andrea is grateful to be living in Baltimore. “We have eight 100% gluten-free eateries plus a gluten free food truck!”
I don’t know about you, but this makes me want to visit Baltimore!
I can’t help but wonder how much community awareness and support is behind the number of safe eating establishments in the area. After all, Baltimore is home of the Celiac Disease Center at the University of Maryland in Baltimore, founded by Dr. Alessio Fasano in 1996.
(Does your area have an active support group?—and if so, how many dedicated gluten free eateries are in your area?)
Psychosocial Component
Of course, even if everyone with celiac was diagnosed and gluten free, which is far from being the case, it still affects “only” 1% of us, (although even more have nonceliac gluten sensitivity). Having to be 100% gluten-free compliant doesn’t fit into the standard diet. And this can (and very often does) lead to emotional struggles.
“Seeing kids struggle with the psychosocial components of this disease,” is the most challenging part of celiac for Andrea. It is difficult to watch kids who are “on the outside of food-centric parties and activities, feeling different, having to speak up and draw attention to themselves,” she said. It can, and often does, lead to anxiety around food and eating.
“The same with adults,” she continued, “especially the feeling of being a burden and bother to others. Those are the things that make my heart break.”
2020 Vision For Celiac Awareness
What is Andrea’s 2020 vision?
“I’ve been working a lot with gluten free college students. Many end up in colleges that cannot safely accommodate them. I’m finishing an online workshop highlighting key action items, prior to admission, to know how well a school can accommodate. I’d love to see gluten-free students be armed with the right questions and action steps to make the most informed decision about their college choice.”
Andrea would also like to see those who are newly diagnosed (and even not newly diagnosed) get connected to solid resources. “That hope extends to the medical community as well,” she said. “There’s so much education not happening in medical school. Every physician, in every specialty, will see patients with Celiac.”
Daily Support Through a Podcast
Andrea shared: “Frustrated by the confusing amount of mis-information, especially on social media, I started a daily podcast called the Gluten Free News. In less then 5 minutes a day, I bring vetted info on research, products, events and people. I’d love for people to listen and subscribe. You can listen on Apple Podcasts, Google Home and Amazon Alexa.”
Be sure to check out Andrea’s website, Baltimore Gluten Free and connect with her on Facebook, Twitter and Instagram).
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Check out the Celiac Stories page for dozens of stories.
Be sure to request celiac tests before removing gluten from your diet.
