Celiac Disease Awareness Month 2020: Now is the time to Advocate
Disclaimer: I am not a licensed medical doctor or counselor. All of my posts are from my own personal experiences in the areas of my own health and wellness. My posts are meant to inspire you in your health journey, but do not qualify for professional medical advice or diagnosis. Please consult a licensed medical professional or counselor. I cannot be personally held responsible for any advice you take from my blog postings and implement into your life without consulting a medical professional first.
It is crazy for me to think that this month marks my 9th year of raising awareness during the month of May for Celiac Disease. Some years I have raised more awareness than others, but I always try to spread education, reality checks of life with this disease, and hope to my fellow celiacs or advocates of celiacs. Sometimes I have let my inner advocate be quiet when it comes to this disease, however with COVID-19 right now I have found myself advocating for myself and others more so then usual, which is a good thing. It has been three years since I wrote a Celiac Disease post, which is way too long, and I am continuing to learn in this celiac life and raising awareness in it.
With everything going on right now with the pandemic, I felt it was important to shed light on the importance of managing Celiac Disease during this time. I also want to provide some general advocating with this disease from the perspective of managing it for almost 9 years, and what you can do during Celiac Disease Awareness Month.
When the pandemic first got started, my mother and I were discussing my Celiac Disease and how it could maybe impact the probability of me getting the virus if I was exposed and my recovery from it. I assured her that from what I read, that as long as I was adhering to my gluten free diet it should not make that big of a difference for me during this time. However, I suspected that those who are not diagnosed or who do not adhere to the gluten free diet strictly, it could decrease their immunity due to their body fighting itself from another invader known as “gluten.” The article on Beyond Celiac confirmed this. Of course research is little with the Coronavirus in general, let alone its affect on celiac patients.
For general knowledge and education, Celiac Disease is an autoimmune disease, which simply means the body attacks itself. When celiacs ingest gluten the body sees this as a foreign invader, and it rejects it. The body does this by all means necessary, much like it does with food poisoning. We are not going to go to in depth in this post on what happens when I or other celiacs ingest gluten, but just know bad and rough stuff happens. Again, it is like food poisoning. You can find out more information about Celiac Disease, and the symptoms here, as well as what happens in the body.
There are so many people who are not diagnosed properly right now with this disease during the pandemic that has overtaken our world. There are also people who are diagnosed but are not adhering to a gluten free diet strictly. This is why we need to continue our constant fight in raising awareness of this disease and advocating the needs for it, as well as research for quicker diagnosis and a cure.
Prior to my diagnosis I was often sick, and felt bad everyday. Every month I had a common cold or viral infection. I was exhausted and nauseated all the time. I made frequent trips to the bathroom, sometimes in fifteen minute intervals. My stomach hurt and felt bloated on a constant daily basis. I felt mentally crazy with extreme mood swings. I had headaches everyday and took ibuprofen on a daily basis. My whole body ached all the time. My menstrual cycles were non-existent unless I took birth control to “regulate” them. Everyday was just the same day of having zero energy, and feeling physically and mentally worn out. I felt like I was in a daze and I could not think clearly, and learning anything new was a challenge.
When I think back to my life before my diagnosis, I often wonder and think about how much better I would have felt physically and mentally if I was treating my celiac disease during that time in life, and how much I would have enjoyed it.
When my mom and I talked with my Doctors during my initial appointments, we could not say for certain when I first started having symptoms. I had stomach issues my whole life and it was hard to pinpoint, however I knew Junior year in High School is when I felt like the celiac was in full force. This does not mean I was not suffering before then because I had symptoms of celiac disease my whole life, I just knew reflecting back I could recall that change in my body and mind during that time and year in life.
During my Junior year of High School was my first experience with extreme mood swings and depression. I suffered in silence with depression for almost a whole year, since it started during the winter of my Sophomore year in High School. I never told my family or friends how I felt or what I was going through. How I thought about self-harm, and contemplated suicide during this time of life. I was lucky, and I was able to make it through this horrible time and experience. Everyday was like walking through mud for me mentally, and physically I felt bad as well.
My gastrointestinal issues started happening in full force. I would have abdominal pain and bloating, gas, and lots of diarrhea. This made it hard to sit through classes and games. I remember as a cheerleader I would sprint to the bathroom in-between quarters at basketball and football games, and sometimes I would barely feel like I would make it. I often was super bloated feeling in my uniform, and I felt weak during stunts and performances.
I suffered for four years that I know of before I said anything about needing to go to the doctor with my mom. Even then, I did not actually say something to my mom, because my sister is the one who did. She said my bathroom trips would smell up the whole downstairs, which is somewhat funny and sad to me in hindsight, and my mom ending up approaching me about it.
If my sister would not have told my mom, I probably would have just kept going about life as it was. A part of me had accepted feeling horrible and bad on a daily basis, and I thought everyone felt that way or my symptoms could always be worse.
To those who have symptoms of celiac disease, and any physical or mental disease, don’t be like me and suffer in silence.
To those who have family and friends who may be suffering from celiac disease symptoms, or others diseases, don’t be afraid to ask and talk with them about it. Even if they shoot you down, or get defensive, keep bringing it up with them. Send them the symptom list of celiac disease. Keep notes on what you observe happens to them after eating certain foods. All of these acts of love matter.
To those who are diagnosed but don’t adhere to the diet strictly, I hope that you come to your senses with taking care of yourself and your body, especially during this time, and know that you are not alone. Now is not the time, or ever, to not take this disease seriously because it is serious.
I just read in a Swedish’s study just a few days ago that they found those with Celiac Disease have an increased mortality rate. This is not news to me. One of the first things I read as a newly diagnosed celiac is just how higher the chances are to develop Type 1 diabetes, cancer, other autoimmune diseases, infertility, etc.
I have never been able to get full clarity in reading of studies and statistics, if they are talking about increased mortality rate is higher because celiacs are not adhering to the gluten free diet, or they are adhering to the diet but they are still at an increased chance due to cross contact and accidental exposures. Either way, it should be enough to take this disease seriously. When I was newly diagnosed and found out the magnitude of just how serious of a diagnosis celiac was, and how hard it was to live a safe gluten free life, it was upsetting on many levels and if filled me with fear as well as panic.
I knew that if I did not do this “gluten free” thing right, not only was my quality of life going to suffer but also my life expectancy.
I took my newly diagnosis seriously and have been strict on myself since I found out the news almost 9 years ago.
Like I said, I was scared and terrified. I was resistant to changing my life completely. I grieved the loss of what my life was before going gluten free, and sometimes still do. However, shortly after adhering to the gluten free diet and feeling the benefits of it, I realized all that resistance to change was not worth it if it meant I actually felt good physically and mentally in life.
So whether you are wondering if you have celiac, are diagnosed and struggling with the news, or have a family member or friend who does not take their diagnosis seriously, know that now is the time we raise awareness and that we are all in this together. Imagine if everyone reacted to their celiac disease symptoms and diagnosis at the same urgency as we are with COVID-19 right now. If people took dietary restrictions and request like “gluten free” as seriously as the Cornavirus or seasonal flu, and the possibility of exposing people. If we shared articles, research studies, technology, blogs, etc. raising awareness for Celiac Disease, and all physical and mental diseases, imagine where we would be with the proper diagnosis and research of it.
Here are some Facts about Celiac Disease
1 in 133 Americans are suspected to have Celiac Disease and it is suspected that 83% are either mis-diagnosed or undiagnosed. On average it take 6-10 years for a proper diagnosis.
https://www.beyondceliac.org/celiac-disease/facts-and-figures/
These numbers are not good enough friends. May is Celiac Awareness Month, so lets not just raise awareness this month but all months.
Here are some things you can do starting today:
1) Share this blog post by yours truly!
2) Educate yourself on the disease, symptoms, and the diagnosis process.
3) Share this Symptom List with a family member or friends you suspect are suffering.
4) Talk with your local restaurants about gluten free options and the safety measures they take.
5) Educate yourself in whatever profession you are in with how you can better keep celiacs safe or advocate for them. I work in Higher Education and always advocating for myself, coworkers, and students who have a dietary restrictions, especially with events.
6) Participate in this Virtual 5K and be a member of my Team! Make sure you select “Team Jodie” when you register.
7) Eat a gluten free meal with a Celiac you know, or try and make a gluten free meal at home.
8) Donate to Beyond Celiac or the Celiac Disease Foundation to support research and advocacy for Celiac Disease.
9) Shop using Amazon Smile and allocate to the Celiac Disease Foundation.
10) Ask questions and have curiosity with finding out more information with this disease!
Let me know what questions you have and what you think by commenting on this post, as well as connecting with me on Facebook, Instagram, and Twitter.
We are in this together and now is the time to raise awareness and advocate.
Until next time,
