May is Celiac Awareness Month. As someone who lived with undiagnosed celiac for much of my life, it’s incredibly important for me to spread the word about this serious genetic autoimmune disease.
I have a super clear memory of DREAMING of hiking to the top of a mountain without stopping. I was young, thin and energetic, but I couldn’t hit my goal. I always visualized that I would make it. I made a clear workout plan to “stay ready so I ain’t gotta get ready,” however no preparation could get me there because I had the silent version of celiac disease.
Silent celiac disease, or asymptomatic celiac disease is celiac without obvious digestive symptoms.
I was eating a healthy diet, but—because I was also eating gluten—I wasn’t able to absorb the goodness from my food and was malnourished. I was anemic and always short of breath, yet cardiac work ups showed me in premium shape.
A year after my first son was born, I felt unreasonably exhausted and achy, and was haunted by migraines. I was dropping weight and my hair was thinning. Doctors told me that my fatigue was because I was a “stressed-out mom” and that my anemia was because I was “Italian”.
Like many others with undiagnosed celiac, I lived for years with fatigue and strange symptoms, continually rationalizing the symptoms and telling myself to push on. It took 15 years of doctors and dangerously low iron levels to finally be diagnosed.
How can someone eat gluten every day for decades, then suddenly develop severe celiac disease symptoms?
According to The Celiac MD, Dr. Amy Burkhart, celiac disease is hereditary but there’s something else needed to trigger the onset: an environmental factor. There is very little data on the trigger(s) for celiac disease, but researchers have identified some possibilities: pregnancy, emotional or physical stress, menopause, antibiotic use, viruses, and gastrointestinal infections.
So basically: Genes + Gluten + Trigger = Celiac Disease
Because celiac symptoms can be vague and mimic many other conditions, a diagnosis can be overlooked or missed altogether. In addition, blood test results for celiac disease may be normal even if you have the disease!
I was relieved and grateful for my diagnosis, but soon learned that healthful living with celiac is not just about diet. The gluten-free diet can be incredibly tricky to navigate at first since there’s very little education around it, not to mention all the nutrient deficient replacement foods out there.
After much trial and error, I finally figured out the balance of diet and exercise that keeps me energized, happy and—thankfully—healthy.
My dreams of hiking the long trail were fulfilled! Being in high altitudes, taking in deep breaths of fresh mountain air and feeling well was magical.
Celiac disease is a hard thing to teach or explain. If we all become more aware that food could be the reason we feel unwell, and if we’re better educated about food related illnesses, then many lives could be improved! If you know someone who feels tired, looks pale, and either can’t keep weight on or is gaining weight and can’t lose it, then they may have a food sensitivity. Encourage them to get tested. You might be the one who makes a difference in their existence!
What if everyone you know took 60 seconds to learn more about celiac disease? And what if that one minute was enough to help others see that celiac disease is real, even if its effects can’t always be seen on the surface? That’s the premise behind Beyond Celiac’s #60ForCeliac awareness campaign.
In just 60 seconds, you can show people the realities of living with celiac disease. Here’s what you do:
- Watch the video above.
- Share it with your friends and family on social media. Ask them to take #60ForCeliac and watch the video to learn what it’s like to live with a serious genetic autoimmune disease.
You can keep the awareness going even after you share the video. Beyond Celiac also has infographics you can download from their website to share on social media, to e-mail, or even print to give to your doctor’s office, pharmacy, school, workplace, etc. They only ask that you use the hashtag #60ForCeliac when you share on social media. Easy enough… right?
People might say I’m a dreamer, but I’m not the only one. I learn from my friends how to stay positive, dream large and keep my chin up!
You got a bad shoulder and you still put on a happy grin. Now we’re talking. Impressive!! You’re juggling multiple roles and responsibilities, but people are expecting you, so you show up. That’s some big dedication to this life’s mission.
Life threatening illness—and you’re still next level stoic. Now you’ve blown my mind!
The promise keepers
The dream weavers
The sincere believers
I admire these positively positive people. I dream of them around me and being as dreamy every single day as they are. I’m following in your footsteps folks!
If you think you may have celiac, been recently diagnosed, or have been struggling to find a new way of living around your diagnosis, please know there are many resources and much support out there for you to change your life into a feel-good positive one, and bring power and strength into a healthy existence.
“Trust your gut” and keep going until you get answers. I changed my life and you can too. Take good care of yourself and keep dreaming, as hard as that may be. Dreamy is good and can help you adjust, make a roadmap, and clearly see the path that stretches out in front of you. The dreamers I know do big stuff. Great big stuff. I think they go hand in hand. Mano y Mano.
A good attitude is important, but action paired with a positive mindset is essential. I’m cheering for you, and you for me.
Dreamy Loveliness is your motto,
Live and love today—and you’ll have a better tomorrow!
I sent in my thoughts to Real Simple magazine’s May 2017 Makeover Issue and “Your Words” section; both appropriate terms that work perfectly for me. Their question was “If you could add an extra day to the week, how would you spend it? My Words made it into the magazine.
I went for it. And though it may be a small milestone to some, it meant a lot to me. You see… dreams can be big or small. Endless kindness even through chaos. Smiles even in the face of adversity.
During Celiac Awareness Month, you can take further action to improve the health and well-being of the gluten-free communities through a variety of initiatives.
- Make a donation to Beyond Celiac and/or the Celiac Disease Foundation—two organizations forging pathways to improve quality of life for all people affected by gluten-related disorders and to find a cure for celiac disease. Your company may even have a matching gift program to double the impact of your gift.
- Join the Celiac Disease Foundation’s Team Gluten Free community fundraising program, a fun way to raise money and awareness!
- Add your data to iCureCeliac, a patient-powered research network that allows patients to contribute medical information and their experiences living with celiac disease and gluten sensitivity to help researchers improve treatments and find a cure.
- Become a Patient Advocate to help design and evaluate celiac disease research.
- Get involved with your local schools and businesses and help raise awareness of celiac disease in your community through the Celiac Health Awareness Program (CHAP).
- Attend or participate in the CDF’s Gluten Free Expo June–4 in Pasadena.
- Join a celiac disease Support Group.
- Get Tested! If a family member is diagnosed with celiac disease there’s a 1 in 20 chance that a first-degree relative like a parent, child or sibling will also get celiac disease, and a 1 in 39 chance for second-degree relatives such as aunts, uncles and grandparents.
I’m inspired by soldiers who work hard and stay true to their aspirations. Dreaming real dreams is where it’s at. I believe!!!
You may say I’m a dreamer
But I’m not the only one
I hope someday you’ll join us
And the world will live as one.
— John Lennon