What Celiac Disease Awareness Month means to me

This is a face of too many misdiagnoses. This is me before I finally had an answer.

My body was wracked and in shambles. Nervous system stressed to the point of strong shaking episodes. I could no longer drive myself more than ten minutes without experiencing massive dizziness and bouts of blurry vision. No food would stay down no matter how much I ate, which resulted in a scary weight of less than 95 pounds. ADHD ruled my everyday, my mind raced constantly, and then there was the pain. A lot searing pain. These things were the norm, and the norm was becoming worse and worse–fast. I thought I would never function in society normally ever again because of what seemed to be eating me alive from the inside out. But I couldn’t find an answer. And I knew I couldn’t go on like that.

I remember feeling incredibly frustrated and ready to give up after doctor upon doctor brushed off my debilitating symptoms, whittling them down to things like stress, “being a college student”, irritable bowel syndrome, anxiety, depression, just “getting older”, and even an eating disorder. Well of course I had an “eating disorder”; food just went in and came right back out…unintentionally! The fact that I saw half a dozen doctors that misdiagnosed me and failed to look for the root cause, (one that isn’t “solved” with a pill) frankly scares me. It scares me more today than it even did back in that moment because at the time, I didn’t realize that I really could have died from this.

Luckily, my parents were able to help me find a doctor who finally listened to all of my symptoms. That doctor turned my life and health completely around in a matter of weeks with the first mention I’d ever heard of Celiac Disease and gluten. While grateful, I questioned why I was not correctly diagnosed when my first symptoms showed as a toddler. I was nearly 21 years old when the diagnosis came, and it came at the breaking point. This is not acceptable to me, and shouldn’t be to anyone.

May is Celiac Disease awareness month. I see it as my moment to shine and be proud of what I’ve overcome. I’m healthy and alive today, living in harmony with my lifelong disease. While I often advocate for awareness throughout the year, I’m taking the special opportunity today to share my story again in hopes that the more we share, the shorter the diagnosis time will become. According to the National Foundation for Celiac Awareness, the average time it takes for someone to be correctly diagnosed with the disease is 6 to 10 years. Misdiagnosis and no diagnosis can cause permanent damage, cancer, and can kill.

Healing can only begin after answers are found. Talk to someone about Celiac Disease today. Read about Celiac Disease on the NFCA website, or follow the links in my Resources page. And don’t forget to hug a lovely Celiac near you

Happy Celiac Disease Awareness Month!

Friday

March 2013

Earth Hour 2013

“The World is using the equivalent of one and a half planets to support life on Earth.”

Earth Hour 2013 is coming up tomorrow, Saturday March 23 at 8:30pm (Eastern time) and I couldn’t be more excited! It snuck up on me this week and I nearly forgot all about it until yesterday evening, even after I recently wrote an article for Delight Gluten-Free Magazine about celebrating it with a gluten-free twist in the March/April issue….safe to say it’s been a busy week! We’re planning to switch off all our lights and appliances, have a candlelight yoga session, and indulge in vegan blueberry pie–the recipe will be posted on Sunday!

This morning as I was writing this post, I was quietly listening to the news in the background. They were discussing a nominated CNN Hero, Doc Hendley, for his work in bringing clean water to those living in impoverished areas where safe water is scarce. It’s sadly not news to me that many people in other countries must walk for 4 or 5 hours just to reach their water for the day, and it’s dirty water at that. Today is World Water Day and I feel incredibly lucky to live in a place where clean water is available to me whenever I turn on the sink. Clean water should not be a privilege. It’s so vital that we take care to preserve the resources on this planet through our everyday actions and by celebrating our planet every day. Check out the awesome video by EarthHour.org for 2013:

In the spirit of celebrating and sustaining our mother Earth, I’d like to share five easy but effective things that I try to do on a regular basis to help sustain our planet:

Turn off the water faucet while brushing teeth to save water.
Use sustainable candles and candlelight instead of lamps a few nights per week.
Bring reusable grocery bags on shopping trips. If I forget, I am sure to recycle the bags by using them for small trash bags in the house or in other ways.
Use (or upgrade to) energy saving electronics and appliances whenever possible. My latest energy efficient purchase was an energy star ultrabook laptop.
Buy local produce often. I love supporting the local farmers and economy in this way. A bonus is planting a garden annually ourselves.

For more ideas to celebrate Earth Hour and Earth Day often, check out my article in the March issue of Delight Gluten-Free Magazine for tips and fun vegan/raw food recipes. I also have a plethora of easy and earth friendly recipes I’ve posted throughout the life of this blog that can be browsed in the Recipe page or by typing in keywords such as “vegan” or “earth day” in the search box in the upper left corner of my site.

Happy Earth Hour and World Water Day!

How will you celebrate the planet today?

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Thursday

March 2013

Quote of the Day

Everyone I’ve met that has Celiac disease or severe food allergies of any kind, I feel an automatic unspoken sort of connection to. It’s a mutual feeling of understanding, of having “been there”. While I’ve never met Zooey Deschanel, I think she’s the epitome of making the most of her situation with multiple difficult food allergies. I learned Zooey is allergic to gluten, soy, dairy, and eggs from her appearance on Top Chef where she was a guest judge who challenged the contestants to create an allergy friendly vegan lunch for her and her family. It was fantastic to see her embracing herself and her health, while bringing allergy awareness to the mainstream food shows.

I fell in love with this so true quote from Zooey Deschanel, which can apply to everyone regardless of their walk in life:

Being tender and open is beautiful. As a woman, I feel continually shhh’ed. Too sensitive. Too mushy. Too wishy washy. Blah blah. Don’t let someone steal your tenderness. Don’t allow the coldness and fear of others to tarnish your perfectly vulnerable beating heart. Nothing is more powerful than allowing yourself to truly be affected by things. Whether it’s a song, a stranger, a mountain, a rain drop, a tea kettle, an article, a sentence, a footstep, feel it all – look around you. All of this is for you. Take it and have gratitude. Give it and feel love.

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Friday

March 2013

Potential Desensitization to Food Allergies?

Today I read an outstanding and in-depth article regarding severe food allergies and the prospect of desensitization. I recommended this reading to everyone, as it’s something we should all know about. A big thanks to my sister for sharing this article with me in the New York Times entitled, “The Allergy Buster, Can a Radical New Treatment Save Children with Severe Allergies?” This article covers everything from desensitization to food allergens to potential causes of the stark rise in food allergies today. Reading this was very personal and close to home for me, as I can totally relate to the stories of these children and the fear aspect of living with intense food allergies. I’m quite lucky to have my most severe allergies as an adult and not as a small child. I’m so glad to see that there’s hope of it getting better for those of us with life threatening cases, especially children, who often cannot handle living with these problems on their own. Here’s an interesting quote from the article regarding some evidence for the recent spike in food allergic youth:

”One focus of Nadeau’s lab is studying whether the toxins found in pollution, pesticides or tobacco smoke damage the genes in ways that make children more likely to have allergies and the intimately related disease of asthma. There is evidence that having a parent or a grandparent who smoked — even if the child was never exposed to smoke — is a risk factor for food allergies, as is living in an urban area with elevated pollution.”

Also the evidence between poor diet during pregnancy and food allergy risk is not surprising to me. What do you all think of this touching article? It really hit home for me as I’m sure it will for others. But it really leaves me hopeful for the future.

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Friday

December 2012

Celiac: In the Family

Since my diagnosis nearly four years ago, I’ve had the pleasure of conversing with some wonderfully pleasant people about living gluten-free, Celiac disease, other food allergies, and health obstacles. Reaching out to this community is probably my favorite thing in the world to do, as making connections with people who share the same winding road is an invaluable experience.

One thing in my conversations as of late has been more than troubling to me though. When faced with the facts that Celiac is a genetic disease, many people who were cordial to me just moments ago turn angry and lash out, refusing to believe that their parents, their children, or even their grandparents may carry the gene. I become the bearer of supposed “bad news” and am shunned as the “bad guy”. Well, bad girl I suppose. It is understandable that such breaking news may be a shock to some, but in the wake of an attitude that is truly reckless and selfish, I have to call foul.

The University of Chicago Celiac Disease Center states that genes related to Celiac disease are passed down through generations. A first degree relative (parent, child, brother or sister) of someone with Celiac disease has a 1 in 22 chance of developing the disease while a second degree relative (niece, nephew, aunt, uncle, grandparents, and half siblings, etc) has a 1 in 39 chance. A great place to start with the breakdown of testing is through this U of Chicago pdf. While some carriers of the gene may not have active Celiac, they could develop symptoms at any point in their lives. Routine testing is recommended in these cases. It’s also possible the gene was not inherited, which in that case is a fabulous thing to know.

So many people are brushing these facts aside in a “why bother testing?” attitude that is really doing a major injustice to themselves and the health of their family. In one instance, a mother struck up a conversation with me to talk about her recently diagnosed daughter. I responsibly let her know the risk that her other children may face as well as her and her husband. The genes had to come from somewhere in that immediate family, but she refused to believe me and stormed off.

I strongly urge all of us with celiac disease to speak out and make these facts well known! Knowledge is power and when lives could be at risk, we need to know we are doing all that we can to improve the situation. I’ve always said this disease was a blessing and a responsibility. It is now more than ever. It doesn’t have to be Celiac Disease Awareness Day, Month, or Year for us to spread the word and maybe save a life in the process. Please feel free to forward, repost, share, and link back to this post.

Resources:

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