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

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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Thursday

September 2012

Celiac Disease Awareness Day

{Image: Hovied News}

When I was diagnosed nearly four years ago, I remember explaining Celiac Disease and gluten intolerance to everyone I knew. Most of those people had no idea what I was talking about at the time, but were almost gluten-free experts by the time I had stopped talking their ears off. Mentioning or explaining Celiac to someone may seem trivial at the time, but in the long run, it sure has gotten us far along the road to widespread awareness. Talk to someone about Celiac Disease today and help spread the awareness even more! Happy National Celiac Awareness Day!

Check out my other post on Celiac Awareness here.

Check out my past posts on the symptoms of Celiac, basics of diagnosis, and the importance of getting a diagnosis.

Who will you tell today?

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Monday

August 2012

Why I’m Gaga for a Gluten-free Lady Gaga

http://musicalbiography.com/lady_gaga_face.jpg

That gluten is a monster!

There’s been a clash of opinions flying through the gluten-free community on the recent news that Lady Gaga has gone gluten-free to lose weight. As a result, there’s a lot of speculation about how healthy the average gluten-free diet really is and how on earth people that don’t medically need to be on the diet could possibly deprive themselves of glutenous goodies. As a gluten-free community, we should really cut Gaga some slack. In reality, her diet is much healthier than the average gluten-free diet, which often still consists of overly processed foods and high sugar content. Gaga gives a fresh approach to how healthy eating simply and gluten-free can really be.

What she’s embarked on is really much more than just a gluten-free diet. Her diet is completely free of processed foods, excess sugars and most starches. I can’t bring myself to fully understand the mindset that many of us with Celiac Disease, gluten intolerance, or gluten-sensistivity are taking toward this. Many seem to find that the label of her diet as Gluten-free, but not medically prescribed, deems them on high to proclaim that those random non-diagnosed folk striving for better health on a truly healthy gluten-free diet are selling their own medical diagnosis short. To be honest, there are likely thousands of people who eat this way on a daily basis and it just so happens that eating very healthy often excludes gluten. This is something we should celebrate. It’s not making the gluten-free diet into a fad, it’s simply advocating for pure and simple health. How can we argue with that? If in a wild alternate universe I didn’t have my diagnosis and had no real medical reason to be gluten-free, I would probably still eat mostly gluten-free since gluten is often packed into processed foods, which I kick to the curb for health. I’d be shocked and angry to be patronized for that decision.

I sincerely urge the gluten-free community to take another look at their stance towards celebrities, popular names, and even their own neighbors going on the diet to lose weight. If one truly wants to acheive great health, paying attention to what fuels and nutures the body is vital. When no diagnosis of Celiac, intolerance, or sensitivity is present, it’s not a crime to go gluten-free. Let’s start paying attention to the fact that we don’t “own” this “diet”. I’d even like to start using the term “gluten-free lifestyle” rather than diet. She’s bringing a whole new face to this shift and movement toward overall wellbeing.

My last thought; Yes, I’m fully aware that not everything that’s labeled gluten-free is healthy. But in Gaga’s case, she’s eliminating the need to even read those jumbled labels by cutting out the crap. It certainly is healthy and she’s rocking it–she’s gluten-free 2.0! We can all take a lesson from this, gluten-free or not, and learn to properly nuture our bodies on a pure and simple diet and lifestyle.

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Tuesday

July 2012

Maintaining a Healthy Weight with Protein Shakes: Gluten-free, Allergen-free

Whether you’re looking to put on a few pounds (like me) or you’re getting rid of a few, protein shakes can be beneficial in both circumstances. Being allergic to gluten and a few of the top 8 allergens definitely makes finding a good protein powder challenging though. Usually they’re made from soy, whey (dairy) or have a combination of other allergens present in the ingredients. I’m so glad to have found a safe alternative: Jarrow Formulas Brown Rice Protein Powder.

Most rice is usually considered non-allergenic, and when you combine this with the allergen statement from the Jarrow Formulas webpage, you get a wicked awesome product that suits a lot of food allergic folk. Here’s the statement:

No wheat, no gluten, no soybeans, no dairy, no egg, no fish/shellfish, no peanuts/tree nuts.

In addition, the website states that this product is fine for vegetarians and vegans alike. I plan to look into other Jarrow Formulas products in the near future since I now know they have an extensive food allergen labeling system going on.

TIPS:

Gaining Weight with Protein shakes: Sometimes being allergic to many foods can make it hard to increase your BMI to a normal level. Try mixing the chocolate, vanilla, or mixed berry flavors of the powder with some good quality coconut milk (I use SO Delicious Sugar Free Vanilla) and add these shakes into your regular diet. Don’t use them as meal replacements, but rather to supplement and add extra calories and healthy protein. This is the route I’m taking right now.
Losing Weight: Instead of adding sugary or fatty snacks to your mid-afternoon, try whipping up a protein shake instead. It will fill you up and make you feel full longer. When you binge on sugar laden foods, you get an instantaneous boost, but it doesn’t last. You’ll end up crashing, then eating more to keep your energy levels up. Adding a protein shake instead will help break the cycle.

(Disclaimer: As I always like to note, I am not a medical professional and this should not be regarded as medical advice. Talk with your health professional to determine the best diet/health regimine for you).

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