Celiac Disease
Approximately 60-70% of Americans with Celiac Disease are needlessly suffering from not being diagnosed.
Celiac disease, while widely known, is often not fully understood by the majority of people that have heard of it. Celiac disease is a digestive and immune disorder that heavily damages the small intestine, triggered by the consumption of gluten. If not properly diagnosed, gluten can create inflammation in the small intestine that damages its lining and severe levels of malnutrition. The disease can ultimately lead to long-term health effects such as intestinal cancers, type 1 diabetes, osteoporosis, thyroid disease, multiple sclerosis, anemia, infertility and miscarriage, epilepsy, and more. While there are various steroids and drugs such as azathioprine or budesonide that lessen the severity of its effects, there is not a complete cure. The main treatment for Celiac disease is following a gluten-free diet.
Celiac disease is hereditary and people with a first-degree relative with celiac disease have a 1 in 10 risk of developing it. Those with Celiac disease also have a greater risk of developing coronary artery disease, and an even greater risk of developing small bowel cancers. It is common for those with Celiac disease to be deficient in fiber, iron, calcium, magnesium, vitamin D, and more.
First-hand Experience Living with Celiac Disease
According to Brooke and Devon - twins diagnosed with Celiac disease at the age of 9 - one of the biggest challenges of leading a gluten-free lifestyle is when gluten is hidden in certain foods or ingredients. "For example, soy sauce has gluten in it and we would never have known that without our doctors telling us," says Brooke and Devon.
"Transitioning to a gluten-free diet at a young age was a very difficult thing to take on. At first hearing we would have to eat gluten-free foods disgusted us. We thought gluten-free food would be so gross and we were so upset that we could no longer eat some of our favorite foods."
Brooke and Devon faced challenges that affected their own relationship with food because they were diagnosed at an age where the introduction to new foods was crucial. They needed to adapt to being gluten-free by finding new gluten-free recipes, restaurants, and grocery items in the supermarket. Although it seems difficult to identify which foods contain gluten and which foods don't, Brooke and Devon say that over time, it got significantly easier to find alternatives to their favorite foods that would benefit their body rather than harm them.
Things may have become easier for them to manage at home, but there are undoubtedly tricky situations outside of the home that make living with Celiac strenuous. "One case that we had difficulty eating a gluten-free diet was during a summer when we traveled the west coast on a teen tour. We ate at restaurants every night so there were no home-cooked meals made by our mom or support from our mom to help us every day and night with preparing gluten-free meals. Some random parts of the west coast are not as familiar with gluten-free foods, so our only choice was to eat salads." Lack of acknowledgement for those with Celiac disease can lead to more difficult meals and unimaginable frustration with not being able to have a wide range of food choices.
Conclusion
"We would like everyone to know that being gluten-free isn't as hard as it seems because, in this day and age, there are so many new products made in replacement of foods that naturally have gluten in them… Things to look out for that are not gluten-free are Barley, Rye, Oat, Wheat, and Malt… we like to think of the acronym BROWM."
Today, Celiac disease remains one of the more prevalent diseases, with over 200,000 cases in the U.S. per year. In a 1999 study, Ventura, et al. found that the later the age of Celiac disease diagnosis, the greater chance of developing several other autoimmune disorders. Celiac disease may be commonly known, but there are various aspects of living gluten-free that remain unacknowledged.
Brooke and Devon run an Instagram page to both raise awareness for Celiac and share some of their favorite recipes and restaurants that foster a more comfortable environment for those who navigate a gluten-free lifestyle.
Check out their Instagram account @glutenfreefield and their "Celiac Sunday" highlight to learn more!
Transcript
Q: When were you diagnosed?
A: We were diagnosed with Celiac when we were 9 years old.
Devon was diagnosed at the end of 4th grade and Brooke was diagnosed
in the beginning of 5th grade.
Q: What was your reaction to the initial diagnosis, what did this
diagnosis mean in your life?
A: Transitioning to a gluten free diet at a young age was a
very difficult thing to take on. At first hearing we would have to
eat gluten disgusted us because we thought gluten free food would be
so gross and we were so upset that we wouldn't be able to eat some
of our favorite foods. Throughout the years there has been more
gluten free options and we have become used to eating gluten free
foods.
Q: How did the people around you support you during this
time?
A: Our mom was our biggest supporter during these times
because she found as many gluten free recipes as possible, would
bake and cook more often, and she would research the best gluten
free spots through social media and friends.
Q: In what ways did you need to adapt after you were
diagnosed?
A: We needed to adapt to being gluten free by finding new
gluten free recipes, restaurants, and grocery items in the
supermarket which was challenging at first because we did not know
what to look out for in ingredients while purchasing items. At first
gluten free foods tasted gross to us in comparison to the regular
foods we have been eating the previous 9 years of our lives.
Throughout time we became used to eating a gluten free diet and
stuff started tasting more yummy to us!
Q: How do you manage living with Celiac Disease in your everyday
life now, and has your view on Celiac Disease changed since you
were diagnosed?
A: We manage living with Celiac Disease by always checking the
ingredients for everything we buy, make the waiters/waitresses aware
that we have celiac and that we eat a gluten free diet, and to
educate our friends and peers about what Celiac disease is. Our
perspective on being gluten free has completely changed from when we
were first diagnosed because we don't think gluten free food is as
gross as we thought it was when we first got diagnosed and we are
able to identify what food is naturally gluten free without there
being a substitute of a gluten free product.
Q: Are there any cases where you had a difficult time in a
setting or place due to Celiac Disease? If so, share.
A: One case that we had difficulty eating a gluten free diet
was during summer ‘21 when we traveled the west coast on a teen
tour. We ate at restaurants every night so there was no home cooked
meals made by our mom or support from our mom to help us every day
and night. Some random parts of the west coast were not as familiar
with gluten free so our only choice was to eat salads. Another big
challenge is where gluten is hidden. For example[,] soy sauce has
gluten in it and we would never have known that without our doctors
telling us. This is just one example of many things that
surprisingly have gluten in it and there have been times where we
mistakenly ate gluten.
Q: What message would you like to convey with the people who have
heard of Celiac Disease but do not know truly what it means to
live with it?
A: We would like everyone to know that being gluten free isn't
as hard as it seems because in this day and age there are so many
new products made in replacement of foods that naturally have gluten
in them. Also so many people don't even know what gluten is, it is
wheat and if you don't know what wheat is then you can think of it
as flour, but not all flour has gluten in it because some flours are
made from rice (which is gluten free). Things to look out for that
are not gluten free are Barley, Rye, Oat, Wheat, and Malt… we like
to think of the acronym BROWM.
Q: Any other fun facts you'd like to add?
A: Check out our "Celiac Sunday" highlight on instagram to see
all of the fun facts about Celiac disease that we have posted.
[Including : More children have Celiac Disease than Crohn's
Ulcerative Colitis and Cystic Fibrosis combined. Celiac disease can
affect every organ in your body. People recently diagnosed with
Celiac Disease are commonly deficient in fiber, iron, calcium,
magnesium, zinc, folate, niacin, riboflavin, vitamin, b12, and
vitamin D. Approximately 50% of diagnosed patients still report
symptoms while on a gluten-free diet. Celiac Disease affects an
estimate of about three million Americans.]
Sources
https://celiac.org/about-celiac-disease/what-is-celiac-disease/ https://www.niddk.nih.gov/health-information/digestive-diseases/celiac-disease