Tulane VISTA Blog

Fighting Poverty with Passion

It’s What’s on the Inside That Counts_ Sara Skjerli

“You just do it. You force yourself to get up. You force yourself to put one foot in front of the other, and Gosh Damn it, you refuse to let it get to you. You fight. You cry. You curse. Then you go about your business of living. That’s how I’ve done it. There’s no other way.”

Elizabeth Taylor

If a tree falls in the woods and nobody is around does it still make a sound? The philosophy of life is wrapped up in the physical, with many people only believing what they can feel, touch, smell, or see with their own eyes. However, for the nearly 133 million Americans (1 in 2 individuals) who look like healthy, normally functioning people on the outside, the tree falling in the forest does make a sound.

What is Invisible Illness?

Today, 96% of people who live with an illness have an illness that is invisible to the outside world. We do not use canes or wheel chairs, have handicap stickers in our cars, or need to get picked up in the golf carts at the airports, we are just sick. All the time.

An invisible illness is one that is not readily apparent to the average person passing by, to the people that we work with, live with, play with. It is a chronic, long term, life long medical condition that requires serious attention and continued medical treatment.

According to www.medicinenet.com a chronic disease is one lasting 3 months or more, buy the definition of the U.S. Center for National Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear.

Invisible, chronic illness comes in many forms. Some of the more well known ones are cancer, Rheumatoid Arthritis, Migraines, Lyme’s Disease, ADD/ADHD, Depression, Chrones Disease, IBS, and Celiac Disease.

It is estimated that by 2020 almost 157 million Americans will be effected by chronic illness, with projections of over 20 million more people being diagnosed by 2030.

Why Does This Matter?

For as far back as I can remember I did not feel well. I was ALWAYS sick. All the time. Constant Dr. visits for various ailments such as allergies, head colds, sinus issues, stomach/digestion pain, joint pain, swollen limbs, depression, OCD, anxiety, chronic and constant fatigue, brain fog, short term memory issues, lack of concentration, strep throat, ear infections, and the list goes on… I would spend weeks in bed unable to move, my body was being squeezed from the inside out, my stomach always hurt, I had horrid heart burn, and my friends, family, and Primary care Physician thought I was a hypochondriac. One day, sick in bed, I came across a random pop up quiz asking one question, “Do You Have A Gluten Allergy?”.  I took the quiz. My results… I had every diagnosed symptom  and discomfort on the list, minus one.

For those of you who know me, you know my love of research and figuring out how to do things on my own. In true form, I immediately dragged myself out of my bed and zipped down to the closest books tore where I proceeded to purchase every book I could find on gluten and gluten free diets.

I put myself on a gluten free diet and within a week started noticing improved differences in my overall behavior and health. My body hurt a little less, my brain felt clear, and for the first time in a long time I felt like I could see in color.

What is Gluten?

Gluten is a sticky protein found in wheat, rye, and barley that acts as a glue and  helps hold the food together. gluten

Gluten is not just found in bread and flour, but in things like malt, beer, candy, and soup. It is used as a cheap alternative to bulk up the final product and help hold it together and keep its consistency.


Celiac Disease

Celiac Disease is a serious autoimmune disease where the body is unable to process a protein called gluten (found in wheat, rye, and barley). When individuals with celiac disease consume gluten, their bodies wage an internal war on itself and go into full attack mode. This manifests differently in each person and can come through as one (or many) of the over 300 known symptoms.

celiac explination

Diagnosis and Treatment:

Celiac’s is a hereditary, genetic, autoimmune disease. Today it is easier than ever to get tested. 

  1. Blood Tests: Most common blood test is a tTG-IgA test. This tests for celiac antibodies in your blood. If your results come back positive, then your physician will recommend the second testing;
  2. Biopsy of Small Intestine: Performed by a Gastroenterology, a small sample of your small intestine is taken and analyzed to deduce if there is any damage to your small intestine.

The only set back to both of these tests is that you have to be consuming gluten in order to get accurate results! If you are on a gluten free diet, medical experts recommend that you consume copious amounts of gluten for one to three months prior to the test. 

There is no cure for an autoimmune disease and Celiac’s is no exception. Today, the only way to combat Celiac’s is by following a strict gluten free diet… for life. 

Living With Celiac Disease

After about 6 months of living gluten free, I decided to get a biopsy done in order to medically confirm, what I already knew. The Dr.’s office failed to inform me that I needed to eat gluten (and a lot of it!) before the procedure. I did not last one chicken nugget. My initial excitement over tasting foods I thought I would never taste again, was quickly over powered by my almost immediate crippling stomach pain, dizziness, and nausea. The lingering aftermath would be evident for weeks to come. My verbally colorful cancellation message was relayed to the poor receptionist and I resigned myself to the lifelong fate of living gluten free. A couple years later I was officially tested and my diagnosis confirmed I was a genetic carrier for the HLA-DQ2 gene.

What this means is that I am a genetic carrier of the isolated genome for Celiac Disease. Carriers of this gene do not necessarily have Celiac’s, but they are at high risks of developing Celiac’s at any time. I, one of the ‘lucky’ ones, showed symptoms pre blood test, so it was viable to conclude that my genetic mutation had triggered, and my Celiac’s was already active.

My Life

Every day is a challenge. I wake up each day not knowing how if I will be able to get out of bed, take a shower, feel normal. I am scared to go out to eat, or try new foods that my friends lovingly cooked for me. Many relationships have been ruined by my apparent lack of social excitement and desire to hang out and go out with friends. I am usually the odd one out at social functions with food involved, and it can be a bit of a hassle to take me on a date and surprise me… with anything. I am very open about my disease and very willing to help people understand why it is important that the cake with ‘just a little bit of flour’ or the salad with croutons picked out will still make me sick… for weeks to come.

It sucks being different on the inside. Having to take more breaks or plan every detail of a trip around my dietary needs. Not being able to participate in fun activities, try local foods, and sit at Morning Call in City Park for beignets because there is a literal film of powder sugar and gluten covering every surface. It is terrifying being prone to sever dehydration, cancer, other autoimmune disease, and severe food allergies, in addition to the chronic, lasting, permanent pain my body is in from the years of gluten abuse I unknowingly put it through.

The hardest part is not when somebody offers me gluten filled foods, or I miss out on activities, but when people in my daily life do not take the time to understand that when a tree falls in the forest and nobody is around it does indeed still make a sound.





One comment on “It’s What’s on the Inside That Counts_ Sara Skjerli

  1. Jack Styczynski
    June 9, 2016

    Thanks for sharing!

Comments are closed.


This entry was posted on June 8, 2016 by in VISTA Field Reports.



Follow Tulane VISTA Blog on WordPress.com

Follow us on twitter!

%d bloggers like this: