Struggles with Celiac Disease

Imagine going to a party and in the middle of the room is the desert table, laden with delicious pastries, cake, cookies, and more tantalizing treats. However, you can eat none of it. For many people, this is a way of life. Celiac Disease is a form of a gluten intolerance. Anything including wheat, barley, rye, and sometimes, malt, is off limits for anyone that has been diagnosed.

For anyone with Celiac Disease, the body cannot process gluten and, as a result, inflammation occurs that is harmful to the small intestine, a key part in the digestive system. For many people with celiac, this can cause excruciating pain and other GI systems. The cause of this pain is not only the inflammation, but the deterioration of the villi. The villi are attached to the lining of the small intestine and are the reason that nutrients from food can absorb into the body successfully. With the villi harmed, or in severe cases, destroyed, the body is unable to process nutrients. Malnourishment can occur no matter how much food is in the body. This can cause a person to need to go to the hospital, and in some cases, can bring a person close to death’s door if it is not caught in time. So, how can celiac disease not be found if pain is one of the symptoms? Well, there is a more dangerous form, the ‘silent type’ of celiac disease. For people with the silent type of celiac disease, there is no sign, and without any indication of it, celiac can ravage the body for months before it is found. Testing is always required to diagnose this form and it is very rare.

The Celiac Disease Foundation said that “Celiac disease is estimated to affect 1 in a hundred people worldwide.” Since there is around seven billion people in the world, this disease affects quite a few of the people in the world.

Unfortunately, Celiac Disease is defined as a chronic disease. Anyone who is diagnosed will likely live with Celiac Disease for the rest of their life, and there is no cure yet. For many people, such as myself, this calls for a serious lifestyle change. The only way to live with Celiac Disease, and not just live in a hospital, is an entirely gluten free diet.

Someone that needs an entirely gluten free diet can struggle with quite a few obstacles. For starters, many people struggle with needing to give up some of their favorite foods, or something that they have always enjoyed. Many gluten free foods taste different and many struggle with adapting to it. Cross- contamination is another obstacle. Gluten is everywhere because of others who don’t think about what they have on their hands or what they are touching. Anyone without a gluten allergy usually doesn’t think twice about what they are doing, and it can be dangerous to those who do have an allergy. Going to a restaurant or to a party is another obstacle that many have to face. Many people who are gluten free choose to stay home and eat instead of going out because of all the issues that could arise. The staff at a restaurant has to be aware and make sure that everything they are using is gluten-free, even down to the last utensil. At a party, you never know who has touched what and what is safe. In addition to making sure everything is safe, Celiac Disease is costly as well. Most gluten free foods are more expensive, even when you go out to eat. With all these obstacles, living with Celiac can be a struggle and other people do not always help with that struggle.  

Many people choose to go gluten-free because of the supposed “health benefits.” However, choosing a gluten-free diet if you do not require one is dangerous. If you avoid gluten completely, then your body can develop a intolerance for gluten, and you may end up the same as someone who has been diagnosed with Celiac Disease, someone forced to be gluten-free for the rest of their life, and not by choice. Choosing a gluten-free diet also impacts anyone with celiac disease negatively. For someone who requires a gluten free diet, it is hard to work with people who think that it is a choice and do not put forth as much effort to maintain a gluten-free environment.

I have lived with all of this. I was diagnosed with the silent type of celiac disease three years ago. After two biopsies, a ton of doctor appointments, bloodwork, and an upper endoscopy, I was told that I had to change my entire diet and lifestyle. I was relieved that there was a solution, but the solution turned out to be harder then just taking a pill every day. After I was diagnosed, my mom and I had to attend a class with a nutritionist where we were told what I now had to do for the rest of my life. For the first few months, it was really hard. As my mom, Katie, said, “It was definitely difficult. You had to change the way you thought about everything and you had to make sure everything was safe.”  I had to constantly check everything and be careful what I was eating. Luckily, my family was there for me as well as several websites that I found online, such as the Celiac Disease Foundation website. I also received information from the hospital that helped me to understand what I was dealing with. Over the past three years, I have become comfortable with my diet and new lifestyle and I continue to learn new things everyday.

 

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