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Wayne's Story

 
2/25/2014

As my eyes reverted back to the beginning of the page for the third time, my mind finally realized what my instincts were telling me; there is something wrong.  Twice I read the same paragraphs but I was forgetting a few sentences.  The words didn’t seem to register in my mind completely.  I could not quite visualize the concepts.  It seemed as though I could barely make out some letters.    

It had been just a few weeks since arriving in London.  I was there for a summer research internship in a neurobiology laboratory between my junior and senior year of college.  The year before I left I was becoming fatigued earlier and earlier in the day.  I slept more than usual and sometimes slept through my classes.  I figured I just needed to get away.  These three months would help me blow off steam and become refreshed.  But instead of waking up every day with a new sense of purpose, my fatigue increased, my vision became intermittently blurry, and my cognitive skills decreased.  I prided myself on being able to mentally picture biological concepts in my mind, but a few times that summer I could barely remember the words I had just read on a page.  And the scariest symptom?  I was feeling a sense of depression I have never felt before.  3,000 miles away from my native Philadelphia, with no idea what was going on, I was terrified. 

Upon returning home I visited my family doctor.  When I explained the symptoms; some decreased cognitive abilities, fatigue, depression, the doctor only focused on the depression.  Are you sad?  Did you have a break up?  How is your family?  I tried to clarify; I was having real physical symptoms.  Symptoms that scared me.  Maybe the depression was a result of not being able to do the things I was once able to do, but something more serious was to blame.  I finally convinced the doctor to order some blood work.  Two weeks later he called me into the office to tell me I was severely iron deficient, which could lead to decreased cognitive abilities and depression.  I was a healthy young man who ate plenty of iron rich foods.  How could I have been so depleted?

I was lucky in a sense that I only had to see two doctors before a gastroenterologist (GI) sent me to get tested for celiac disease.  I heard of this disease before, but doubted it as the cause.  They were the people who got cramps and runs from gluten, but I ate bread and drank beer with no GI symptoms.  How could it possibly have celiac disease?  Yet to my disbelief my antibodies came back high and my endoscopy showed the trademark “scalloping” of my duodenum.  I, the kid who loved everything whole wheat, who barely started appreciating craft beers, who never had a GI symptom, had celiac disease.  As I did my research on my newly diagnosed disorder I discovered that celiac disease presents itself in varying symptoms to individuals, and some people even appear to be asymptomatic.  My only major symptom, iron deficiency, made sense since my body could not absorb iron over a long period of time due to scarring.  It seems the only commonality between all suffers is not the symptoms but the treatment.    

The transition to a gluten-free diet was hard.  What others see as a curse, the GI symptoms which follow gluten ingestion, I saw as a blessing.  I never had GI symptoms, so I needed to be extra careful when eating.  Yet ironically enough the lack of GI symptoms has caused me to hone my skills as a label reader.  I came across other people who “cheated” on their diets once in a while.  But my fear of becoming sick again has lead me to never purposefully stray from my diet. 

In the two years following my diagnosis, I have had struggles keeping to a gluten-free diet, including eating at restaurants and explaining to my friends and family why I cannot try their homemade cooking.  But I never really felt different.  I was never ostracized for my disease.  Most people were understanding and helpful. My health returned to normal.  My iron levels increased in no time as my cognitive abilities and energy returned.  With enough planning preparation and compromise, I could go anywhere and do anything.  I was normal again. 

I felt that way when I applied to the uniformed services University of the Health Sciences, the nation’s military medical school.  I had come from a long tradition of military service and wished to enter the air force while pursuing my dream of becoming a physician.  I was accepted to the medical school with my strong GPA and test scores, and was in the process of being considered for an MD/PhD program, when my dreams were crushed.  The board in charge of examining new recruits medically disqualified me from service.  The military has medical standards which are designed to filter out individuals whose health may inhibit one’s ability to serve.  I soon found out that celiac disease is an automatic disqualifier for military service, no matter how benign the symptoms, no matter that it can be completely controlled by diet and thus would not interfere with one’s ability to perform their duties. Militaries in other countries accept celiac disease patients such as Israel.  Even in our military there are celiac disease patients that are accommodated for, albeit ones that have already been accepted and are diagnosed after being in for some time.  The fact that one percent of the population, nearly 3 million people, has no chance to give service to their country is a disgrace.  Talented, motivated,  and for all intents and purposes healthy individuals like myself, who have little to no physical symptoms that are completely controlled by diet, have to sacrifice their dreams because the system cannot adapt to accept these individuals.  I understand the need to maintain physical standards.  I understand that these standards need to be strict to reduce the risk of accepting soldiers who cannot perform their duties due to illness.  But when a medical standard is so stringent it causes the military to pass over qualified people who are physically fit for duty then they are not only ruining dreams but also hurting the organization it is supposed to protect.          

My journey with celiac disease has been a lot like trying a new gluten-free beer.  Sometimes I am pleasantly surprised, sometimes I am left with a bitter taste in my mouth.  While I know my life will forever be different, the majority of the experiences have been positive.  I’ve enjoyed the need to expand my taste buds, have tried grains I have never even heard of, and even learned to appreciate wine!  But I would be lying if I said I was not heart broken when I learned the career I have been working towards my whole life, for no fault of my own but rather by luck of the genetic lottery, is further out of my reach than that pastry staring me down while at line in Starbucks.  The great part about celiac disease is that those afflicted learn valuable skills. They learn the virtue of restraint. I can no longer consume a lot of my favorite foods but I never waiver from my diet. They learn the ability to adapt. Gluten-free food can be both delicious and healthy. And most importantly they gain the courage to overcome. I will probably never realize my dream, but where others see obstacles to be avoided I see opportunities to try something new.   

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