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 Journey That Benefits Others
While the journey between onset of symptoms and a celiac diagnosis often includes years of unnecessary health consequences, it is that journey that often inspires many of us to make a difference for others. Margaret Clegg, of MI Gluten Free Gal, was diagnosed with celiac when she was 22. Her symptoms, however, began over a handful of years earlier. She’s been gluten free now for approximately 17 years.
I am sharing Margaret’s story from a post she shared on her website, MI Gluten Free Gal, with her permission, of course. Click HERE for her story as she tells it.
From High School Years
Margaret remembers the extreme fatigue while she was in high school. “Every day after lunch, I would struggle to stay awake. It happened every day like clock work, in French class. Madame Ross was gracious enough to let it pass many times and let me sleep.”
To College Years
The need for naps continued into college, although she was carrying a heavy load of credit hours while also working part-time. It would only make sense that she was tired. As she shared in her post, “In general I felt okay. Headaches often plagued me and felt I always needed a nap. Halfway through my college career I started to have really bad abdominal problems.”
Bowel issues had Margaret thinking she needed to add fiber to her diet. “I started eating shredded wheat and oatmeal as much as I could, thinking that would alleviate the symptoms,” she shared. “In retrospect, that was definitely not the solution.”
Anxiety and Anemia
“Finally, towards the end of my college career, the anxiety disorder started to kick in,” Margaret continues. “It was during this diagnosis that my physician’s assistant noticed that I looked rather pale. She had the lab draw some blood and tested my iron and hemoglobin levels. We both stood shocked at the results. My doctor said that my ferritin was so low that I shouldn’t even be able to stand up or walk. My (undiagnosed) Celiac story starts to change from here.”
Margaret’s severe anemia meant daily painful iron injections. Tests continued through the semester. No answers. Then, approximately two months before the end of the semester, her physician referred her to a gastroenterologist. Since she was set to move home soon in order to start her student teaching, Margaret decided to wait until then, and see a local physician.
A Surprising Piece of the Puzzle
Margaret’s mother went with her to her appointment. “At this time she told the gastroenterologist that my dad and my grandmother both had Celiac Disease,” she wrote. “Therefore, she figured that this was my ailment.”
Insert jaw drop here. Margaret was shocked. “What? My dad had been ‘sick’ all this time and I never knew about it? How was this possible? For starters, neither my dad nor my grandmother ever talked about it or followed the dietary restrictions that it required,” she continued.
Her physician bypassed the blood work and scheduled an intestinal biopsy. Results: positive for celiac.
Celiac Education Inspired By A Personal Journey
Margaret can’t help but sometimes wonder how an earlier diagnosis might have impacted her life. As someone who lived with undetected celiac for decades, I understand this all too well. Could her childhood cavities have been prevented? Would she have had to endure the joint pain that had been blamed on “growing pains?” And, as she shared, she would have “preferred avoiding the bathroom embarrassment” during her college years.
As Margaret shared in another personal (and emotional) post, she and her husband were unable to have children. Infertility can sometimes be connected to undiagnosed celiac. She does not know if celiac was behind their struggles, but please do check out her post and the information she provides. Infertility, Celiac Disease, and My Mother’s Day Perspective.
It is Margaret’s personal experience, however, and the surprise information she received about her dad and grandmother, that drives her need to be a voice for others.
Gluten Free: Not An Immediate Transition
While Margaret is now firm about the importance of 100% gluten-free compliance, and will promote this need to anyone else with celiac, she is also honest about her own struggles following her diagnosis. As she shared in her post, Confessions of a Former Celiac Cheater, it took her approximately two years to get to that point of being 100% compliant. Check out her post so you can hear her process as she tells it.
A Passion That Stems From Experience (and Pain)
As Margaret educated herself about celiac and about her own diet needs, her concerns for her dad’s health increased. He had been living with diagnosed celiac disease but he wasn’t adhering to a gluten-free diet. As she shared in her post, he faced continued and increasing health problems. She can’t help but wonder how much was connected to his lack of gluten-free compliance. Since the writing of her post, Confessions of a Former Celiac Cheater, her dad sadly passed away earlier this year. (My most sincere condolences to Margaret and her family.)
Margaret continues to be a strong advocate for the celiac community. Continue reading to see her plans moving forward.
2020 Vision for Celiac Awareness and Support
Community Support
I asked Margaret about her vision for 2020. “That is a tough question,” she replied. “When 2020 started, there were lots of possibilities.” Margaret’s father, one of her biggest supporters, died in the beginning of February. “He was always so very proud of me,” she continued. “As I shared in his eulogy, my dad was a ‘helper.’ I guess that is my goal at the moment, to continue to help those with Celiac Disease in any way that I can.”
Following in her father’s footsteps of being a “helper,” Margaret’s goal is to be a voice for those who lack one and to offer a listening ear for those who have questions and concerns.
Small Business Support
The current COVID-19 pandemic has increased Margaret’s support in an area that truly needs support. Restaurants and small businesses. “I have tried to use my platform to promote small gluten-free businesses,” she shared. “As restaurants return to operation, I hope to visit many restaurants that offer gluten-free safe options and share about them. These businesses (big and small) need our support more than ever. My restaurant reviews / interviews have been popular with my readers, and I hope to continue this service for them,” she replied.
I started blogging to share what products I liked and didn’t like. Since then, I’ve come to realize it’s more important to share the “why” and “how” behind a brand or product. Everyone has different taste and texture preferences, and I want people to be able to make up their own mind.
I also realized that there is lots of misinformation out there. I wanted to share informative articles to explain the background about an issue.
I have a degree in elementary education, with a minor in language arts. I see my blog as a way to utilize those abilities to teach others about what can keep them safe on their celiac disease journey.
Be sure to check out Margaret’s website: Mi Gluten-free Gal
(You can also connect with MIGlutenFreeGal on Facebook, Twitter, Pinterest, 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.
