Happy Diagnosis Day! – Project Thankful: Reason #204

Happy Diagnosis Day!

Today, I am celebrating my Diagnosis Day.  Two years ago today, I underwent a colonoscopy and an endoscopy procedure, the results of which determined that I have Esophagitis and Celiac Disease.  The procedures were part of an ongoing “What is wrong with me?” health investigation that started with my primary care doctor sending me for an abdominal CT scan which showed that part of my intestine was distended.  From there, I met with my GI doctor who ordered a full work-up to get to the bottom of the severe, daily pains I was experiencing.  A lot of blood work, another CT scan, an ultrasound, and lastly the colonoscopy and endoscopy later, and it was finally revealed what had not only been causing my recent pain, but the symptoms I had been living with over the years.

With Esophagitis, I have to avoid/limit foods and drinks which will lead to acid reflux.  Spicy foods, salsas, alcohol, fried foods, rich foods…those I tend to avoid.  If I do consume any of those, I have to take precautions or I will be waking up during the wee hours of the morning with intense nausea and stomach pain.  

As much as Esophagitis is a concern, the larger focus is Celiac Disease.  The gluten-free diet has been in the news and media lately as more people are limiting, or eliminating, gluten from their diets.  Some have referred to the gluten-free diet as a “fad diet” and question the legitimacy of a gluten-free diet.  I think a person’s health is their business and their doctor’s business; not open for others to judge or to say what works.  While I appreciate the increased awareness of the gluten-free diet, Celiac Disease, gluten intolerance, and gluten sensitivity – conditions that require a gluten-free diet – are often not emphasized when people talk about the gluten-free diet.

Jimmy Kimmel recently did a segment where he poked fun at the gluten-free diet, filming people’s reactions when they were asked “What is gluten?”  Charlize Theron went on a rant about gluten-free baked goods on Chelsea Lately.  Basically, individuals feel that gluten-free is fair game for fodder.

It’s not funny.  It’s not entertaining.  It shows a lack of information and understanding.

What is gluten?  Gluten is a protein found in wheat, rye, barley, malt, and triticale (a cross between wheat and rye).  Individuals with Celiac Disease, gluten intolerance, or gluten sensitivity follow a gluten-free diet out of medical necessity.  Celiac Disease is a condition where, if gluten is ingested, the body’s immune system will attack the villi – small, finger-like projections in the small intestine that are responsible for absorbing nutrients from food – and damage the villi.  Symptoms of Celiac Disease are varied and are often misdiagnosed.  While a blood test exists to test for Celiac Disease, that blood test can produce a false negative, as it did with me.  The sure way to detect Celiac Disease is an endoscopy which looks for flattening of the villi.  Individuals with a gluten intolerance or a gluten sensitivity experience symptoms of Celiac Disease if they ingest gluten, but they do not damage the villi in their intestine.

Celiac Disease is also considered a disability as defined by the Americans with Disabilities Act (ADA).  Although Celiac Disease does fall under the ADA, the ADA does not require public places that serve food, such as restaurants, to provide gluten-free food (http://www.ada.gov/q&a_lesley_university.htm).  

I choose to celebrate my diagnosis today.  Since being diagnosed and going gluten-free, my life has drastically changed.  For years, I didn’t know what healthy felt like.  Looking back, my symptoms began when I was in high school.  I now have a closer understanding of my health and my body, and I now know what healthy feels like.




Project Thankful: Reason #23

This morning I had an eye appointment.  It was just an annual visit, but one that is still important.  I wear glasses, and that combined with the fact that my grandmother had macular degeneration makes me take my eyes very seriously.

I am thankful for my sight.  And I am thankful for the doctors and other professionals who help to take care of my sight. 

Project Thankful: Reason #1


                                                                           (Source: bidmc.org)

On the first day of my year of thankfulness, I am most thankful for: my health.

Starting in high school, my stomach would hurt if I put pressure on it.  At the time, I thought it was not something to be alarmed about.  I learned not to hold books against my stomach, and eventually I stopped laying and sleeping on my stomach.  In college, my stomach took on a voice of its own, one that liked to speak up in class, especially after lunch.  I again learned to cope, spending class time with one hand on my lap standing guard in case of any stomach noises, so as to gently put pressure on the area, quieting it down.  When I told my doctor about my stomach, they recommended a probiotic.  Because my sister had also experienced stomach issues which led to her being diagnosed with Celiac Disease, I requested a blood test to be done to determine whether I also had Celiac.  The blood test came back negative.

After college, I began substitute teaching.  In January 2012 my symptoms escalated.  I noticed abnormal weight gain despite no change in my normal eating habits, fatigue (think energy completely drained by 3:00 in the afternoon), bloating (or what I liked to call my food baby look), and stomach pain.  A LOT of pain.  It felt as though something was trying to compress my lower abdomen into a compact ball, and that ball was trying to erupt from my stomach.  I would need to sit constantly, and if I did need to stand or dared to move around, I was often hunched because the pain would prevent me from standing straight.

My primary care doctor noticed unusual stomach pain during my annual physical exam.  Pretty much this is what happened: she applied the barest of pressure on my abdomen to test for sensitivity; I said yes, there is sensitivity there; she touched another spot; I shouted “Ow, ow, ow!” and cringed.  This reaction made her order a lower abdominal CT scan, the results of which showed a portion of my intestines was distended. 

Because that signaled “Something is really wrong,” she told me to see a gastrointestinal (GI) doctor.  I made an appointment to see the same GI as my sister, and the GI doctor ordered a full workup to determine a diagnosis.  Lots of blood work, a second CT scan, a colonoscopy, and an endoscopy (the endoscopy and colonoscopy taking place on the same day) later I was diagnosed with Celiac Sprue Disease.  What that means is that I am unable to digest gluten, a by-product of wheat, rye, barley, and malt and their ingredients.  If I do ingest gluten, even the tiniest bit accidentally, or if my food is cooked/prepared on surfaces where glutenous foods have been cooked/prepared without being stringently cleaned, then I will get very sick.  Celiac Disease is an autoimmune disorder, so if I do get glutenated then my immune system will attack my intestines, blunting the villi, the parts of the intestines that are responsible for absorbing nutrients.  Individuals with Celiac Disease need to follow a strict gluten-free lifestyle, including a gluten-free diet.

The damage done to my gut from years of being undiagnosed was severe, taking more than a year for my gut to heal.  The healing extends beyond my gut, however, as Celiac Disease is a condition that takes time to come to terms with emotionally, psychologically, and mentally as well as physically.  And it is one that once you begin to heal, you begin to realize what being healthy truly means.  There are many times when I look back to high school when I began experiencing symptoms and wonder, if I had been diagnosed earlier, how would my life be different now?  The truth is I don’t know.  What I do know is that I prefer to focus not on what could have been, but what might be.  Because that’s what being healthy means: possibilities.