It's a Quality of Life Issue

Day # 23: Health Activist Choice Day 2! Write about whatever you like.

At Nourished I had the wonderful opportunity to listen to Ann Lee and Lauren Lucille Vassar give a presentation on Maximizing your Partnership. 

While I found Lauren Lucille's part of the presentation to be entertaining, enjoyable, and inspiring for my choice day on the WEGO Health HAWMC I want to talk about Ann's part of the presentation.


Ann is a dietitian for Schar, so she started the presentation off by talking about a few research studies that have been done on celiac disease. In talking about this particular research study she created rationale for why social media is beneficial. The biggest reason is support. 


Not only do individuals with celiac and wheat allergies turn to these social media sites, but so do the millions of American who adhere to a GF diet because of Autism, IBS, or non celiac-gluten sensitivity. They make up a large part of a blogger's viewer-ship. 


Gluten-Free is a 2.8 billion dollar industry, but unfortunately many companies don't get it. Many see it as a way to increase their profits, but don't truly understand how the gluten-free diet impacts our quality of life. Luckily, their are companies like Schar that do, and they take great efforts to do gluten-free the right way.


Today there is a lot of information on the research behind celiac disease however, there is little about what life is like after starting a gluten-free diet. In the presentation Ann spoke about a particular study that examined the quality of life in Europe and the US after going gluten free. The study revealed the impact on the diagnosis is greatly different in Italy  then that in the US.


Interesting Fact: In Italy individuals with celiac receive two days off a month to take care of things such as doctors appointments, after they are diagnosed, testing for the individuals family is covered, and they receive 200 euros a month for food.


The study found that individuals in Italy had a much better quality of life compared to individuals in the US. In the US, the quality of life was bad prior to the diagnosis (on avg takes 10yrs for diagnosis). After receiving a diagnosis the quality of life did improve slightly, but did not get 100% better.


The researchers found the biggest struggle for  individuals after going GF was the social aspect of life. Dining out, traveling and work engagements do get easier and become more normal over time, but it still comes with it's challenges. 

One thing that saddened me was the fact that young men were most likely cheat on a first date, rather then to tell their date they had to eat GF. This clearly illustrates that we need to make the gluten-free diet more of a norm.

I'm two years into this journey, and as much as it has become a normal part of my day, it still poses it's challenges. I would never cheat, but being GF comes with certain questions like, how will I handle future work engagements, how will the dating go, and when is it a complete necessity that I have to tell someone that I am GF? By no means am I ashamed to be GF, but sometimes I wish that people could just get to know me for who I am before knowing I am GF.

Thankfully I go to a doctor that supports me and sees gluten-sensitivity as a real condition, but it is frustrating to have to explain myself, and then have some people not get why I have to be so strict if I "only have gluten-sensitivity." It get's me so angry when I come across those occasional articles that say gluten-sensitivity is not real. I honestly think this was one of the reasons why it was so difficult for me to come to terms with my diagnosis. I get as sick as someone that has celiac, yet my test were negative, and then to have people doubt the seriousness was even more confusing. 

Gluten-free needs to become a norm whether it is a necessity as a result of gluten-sensitivity, celiac or even if a person just unexplainable feels better on a GF diet. Regardless of the reasoning, companies and restaurants need to learn how to properly serve this population. This means doing it 100%, not doing it half-way. You can't say you make gluten-free foods and then prepare it on the same surface as wheat. You need to do it 100%. If you choose that you can't do this, that's OK, but please don't advertise you serve gluten-free foods. You are only hurting us. 

Someone recently said to my mom, that they thought the availability of GF foods would decrease after this "hollywood trend" dies down. My mom simply replied, "it better not, because being gluten-free is not a choice, but a matter of life for so many individuals." We all need to continue to educate, advocate, and tell those doubtful individuals gluten-free is here to stay! 

To my fellow bloggers: Continue to share your story. Though sharing my honest feelings can sometimes be scary, I hope that it let's people know they are not alone. We need to be honest about the challenges we face, but I believe it is so important to be as positive as possible. The hope is, this positive attitude, will hopefully be pasted onto the rest of society. Like Lauren Lucille Vassar said, "We are in the wild, wild, west. The sky is the limit." Through writing we have the power to set the standards, and influence societies beliefs regarding gluten-free. 

I dream of a day where life will be like the "italian gluten-free life," where gluten-free is readily available, where the words gluten-free are regular words on a menu, and where it is more of the norm in our society.  

But for now, I will continue to advocate, share my story, and raise awareness.

Celiac Awareness Month is right around the corner. What are you planning on doing to celebrate?