Living with Celiac’s Disease [Part Two]

As soon as I was greeted by the nurse, I knew something was amiss. The nurse quickly ushered me into an exam room, and only a few short minutes later, my doctor followed.

“I’m glad you were able to come in so quickly,” she told me with a hesitant smile. Before I could even return the gesture or spit out a greeting, she finished, “because you’re super, super positive for Celiac Disease.”

You know when people get bad news, and they say the world just suddenly stopped around them? It never occurred to me that it was a real feeling. I can tell you now though— it’s true. The heater stopped blowing, the bustling of papers in the reception area silenced. Even my normally loud and boisterous doctor was struck silent as she waited for me to react.

She stared at me for a moment, and when I didn’t immediately burst into tears, she knew she could finish.

If you’re not quite sure what Celiac Disease is, here’s a quick run-down from my buddies (lol, not really) at Wikipedia:

Coeliac disease (pron.: (/ˈsiːli.æk/; spelled celiac disease in North America[1] and often celiac sprue) is an autoimmune disorder of the small intestine that occurs in genetically predisposed people of all ages from middle infancy onward. Symptoms include chronic diarrhoeafailure to thrive (in children), and fatigue, but these may be absent, and symptoms in other organ systems have been described.

Increasingly, diagnoses are being made in asymptomatic persons as a result of increased screening;[2] the condition is thought to affect between 1 in 1,750 and 1 in 105 people in the United States.[3] Coeliac disease is caused by a reaction to gliadin, a prolamin (gluten protein) found in wheat, and similar proteins found in the crops of the tribeTriticeae (which includes other common grains such as barley and rye).[4]

Upon exposure to gliadin, and specifically to three peptides found in prolamins, the enzyme tissue transglutaminase modifies the protein, and the immune system cross-reacts with the small-bowel tissue, causing an inflammatory reaction. That leads to a truncating of the villi lining the small intestine (called villous atrophy). This interferes with the absorption of nutrients, because the intestinal villi are responsible for absorption. The only known effective treatment is a lifelong gluten-free diet.[4] While the disease is caused by a reaction to wheat proteins, it is not the same as wheat allergy.

Celiac Disease Small Intestine VilliIn layman’s terms, my body doesn’t like gluten (basically what holds food together— think wheat, barley and rye), and when I do eat gluten, my body triggers an autoimmune response that harms the villi (the little finger-like, nutrient absorbing things) in my small intestine.

I listened patiently while my doctor explained that my antibodies should have been below 9 but were over 100 (basically unreadable by the test), and I quietly nodded when she explained the diagnosis and set up a gastroenterologist appointment for me. I was even patient and smiling while the receptionist jotted down some information for me and sent me on my way.

It wasn’t until I got into the lobby of the building that the muffled world around me became suddenly loud and jarring, and reality slapped me like a huge, angry hand.

I’d be lying if I say I didn’t cry. I’d also be lying if I said I wasn’t angry. (And I’d also be lying if I said I didn’t ugly cry so loud in the lobby that people stopped to stare at me…)

I have Celiac Disease.

Fast food is essentially out of the question. No more cinnamon rolls for breakfast. No more beer.

I am very lucky, though, that I have the support of my family and fiancé. All of whom took me out to buy new groceries that night.

An entire year later, I’m not still mourning for the lifestyle that I left behind. I feel incredibly better. Mentally, I’m sharper. Physically, I’m feeling better than I have in as long as I can remember. And the best (well, I’m not sure “best” is the right term here…) part about my diagnosis was that it led to the screening and eventual diagnosis of my dad and served as a huge incentive to have my family screened for it yearly.

Now that I know how much better I can feel and the fact that a whopping 83% of Americans with Celiac Disease don’t even know it, my quest to help others has begun.

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