What Exactly is Celiac Disease?

So what is Celiac Disease?  Of course, by now you know that it means a gluten free diet, but why?  The easiest way to describe it (without scientific terms) is to say that your small intestines have "fingers" on them that grab the nutrients in food as it is digested and then sends these nutrients to your body.  Unfortunately, gluten has worn down these "fingers" in people with untreated Celiac Disease and there is nothing left to grab the nutrients.  So essentially, no matter how much a person with untreated Celiac Disease eats, they are still malnourished.  When you don't get the nutrients, then other parts of your body begin to be effected.  For example, people with Celiac Disease often also have issues with infertility, migraine headaches, osteoporosis, type 1 diabetes, thyroid disease, and lose of tooth enamel.  My dad, for example, was extremely anemic and his skin was a gray color when he was diagnosed.  The crazy thing is that some people can feel perfectly fine while eating gluten and still not know that they actually have Celiac Disease until these other health issues start to clue the doctors into the fact that something is wrong.

So how do you cure Celiac Disease?  Well, the easiest answer to that is a life long diet without gluten. As a person with Celiac Disease stops eating gluten, gradually their small intestines begin to heal and the "fingers" grow back.  It is amazing how many comments my dad and I started to receive about our outward appearances after we went on a gluten free diet.  People told us both how our skin was glowing and looked healthier.  I have also noticed over the last year that my teeth are much better.  This week for the first time in years, I was told that my teeth and gum looked great and I had no cavities at my 6 month dentist check-up.  (This was a big accomplishment because I always have to come back for a filling.  One time, in high school, the dentist told me I had 9 cavities!). Celiac Disease can do a lot of damage to your body before you even realize that you have it...

Some interesting facts from the National Foundation of Celiac Awareness:

• Celiac disease is a genetic autoimmune disease that damages the villi of the small intestine and interferes with absorption of nutrients from food.
• An estimated 1 in 133 Americans, or about 1% of the population, has celiac disease.
• Celiac disease can affect men and women across all ages and races.
• It is estimated that 83% of Americans who have celiac disease are undiagnosed or misdiagnosed with other conditions.
• 6-10 years is the average time a person waits to be correctly diagnosed. (Source: Daniel Leffler, MD, MS, The Celiac Center at Beth Israel Deaconness Medical Center)
• 5-22% of celiac patients have an immediate family member (1st degree relative) who also has celiac.
• Celiac disease can lead to a number of other disorders including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases.
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• Over a four-year period, people with undiagnosed celiac disease cost an average of $3,964 more than healthy individuals.  (Source: Long et al, 2010)
• There are NO pharmaceutical cures for celiac disease.
• A 100% gluten-free diet is the only existing treatment for celiac today.
• A positive attitude, 100% of the time, helps celiacs create a gluten-free lifestyle for themselves and their affected family members.
• The celiac disease diagnosis rate may reach 50-60% by 2019, thanks to efforts to raise public awareness of celiac disease. (Source: Datamonitor Group, 2009)
• Gluten-free sales reached more than $2.6 billion by the end of 2010 and are now expected to exceed more than $5 billion by 2015. (Source: Packaged Facts, 2011)

$70 for Absolutely NO Answers

After I returned from the beach, I went to a gastrointestinal doctor's appointment (at the same practice that the Perfectly Annoying PA was located) with the doctor who diagnosed me with Celiac Disease.  I was so excited about this appointment, because I had been reading all of this crazy information about how extreme people were taking this gluten-free thing and I wanted answers.  I mean, really, did you need a separate toaster for gluten-free bread?  That just seemed a little crazy to me!  Well anyway, when the doctor arrived, he listened to my stomach, then sat down, and said, "so how is it going?"  I started talking a mile a minute (which if you know me is not a stretch, especially if I am curious about something).  I started throwing question after question at him based on what I had read.  Unfortunately, he was absolutely no help!  This doctor who should have known all about Celiac Disease had no answers for me!  He just kept telling me to ask the dietitian when I went to that appointment.  The only good answer he gave me was that these crazy people who seemed to take this gluten-free to the extreme were not so crazy.  Seriously, I really needed to go out and buy a new toaster!  Go figure!  This disease was getting to be expensive!  I mean this useless doctor's appointment had cost me $70.  I had learned more by googling and downloading a $10 book on Amazon...

Beach Blues

So even though I was known as a picky eater, I absolutely loved food!  My favorite part of ball games, carnivals, and beach trips was the fried foods that were delicious and available.  So in July, I packed up and headed to the beach with my extended family.  Now let me tell you...We have a blast!  We spend all day on the beach and spend the evenings eating!  We eat pizzas, subs, sandwiches, and snack on desserts all week!  (FYI - All of these items contain gluten.)  Herein lies my new dilemma!  What do I eat?  Now keep in mind that, like you, my family was not educated on Celiac Disease so they were not sure what food/drinks contained gluten.  I was also in the stage of quitting where you would do anything for just one bite of that delicious food (which was a poison to my body).  My emotions and frustration level were really high.  A few things really upset me that week.  The first was my mother.  She had been dealing with my dad and his Celiac Disease for a while and to be honest when he was away she and I would eat all of the gluten containing food that my dad couldn't eat before I was diagnosed.  In my emotional state, I began to feel like she didn't care about how I felt as much as she did my dad.  My perception was that she would watch what she ate in front of my dad and then when he left she didn't care anymore and the foods that I missed so much would be paraded in front of me by her and the rest of my family!  This began to grate on my nerves!  I remember having an emotional breakdown one day when my family decided to order pizza from our favorite pizza parlor.  I did not have the ability to drive and I felt that there was nothing to eat in the house.  I begged and pleaded for them to eat something else, but they were on vacation and did not understand how I felt.  I remember busting into tears and sobbing about how bad it was.  Everyone looked at me like I was an emotional basket case (which I was) and then finally my aunt volunteered to drive me 15 minutes out of the way to get Moe's to eat for lunch.  I remember sitting in the car feeling sorry for myself, upset at myself for being so upset, and embarrassed at the way that I reacted.  How was I going to be able to handle people eating gluten in front of me?  Didn't they understand how bad I craved it?  Would this obsession with forbidden foods ever go away?

An interesting side note - After reading this blog entry to my mother, she told me her perspective on the beach trip.  She felt that as a 30 something year old adult, living on my own, she did not need to watch what she ate around me.  However, when discussing my feelings during the beach trip with my dad (who has Celiac Disease), he understood how I felt.  (Another example in life when you don't understand a person's struggles unless you are in their shoes.)

Lions, Tigers, and Bears! Oh My!

One thing you may not realize is that there is very little information and public knowledge about Celiac Disease unless you research it yourself.  For the next few weeks, I tried to learn more about Celiac by googling the Internet, reading books, and asking questions.  My life changed drastically!  I began to get anxious wondering where I would get my next meal.  You must understand that at this point my diet consisted of carbs and meat.  The word "vegetable" was not in my vocabulary!  This meant that for breakfast, I ate scrambled eggs.  Lunch was deli meat and cheese wrapped together and held with a toothpick with a side of fruit.  Dinner was tricky since I did not cook and couldn't go out to eat...so eggs or deli meat and cheese it was again!  Needless to say, I was hungry and frustrated.  My social life was suffering because I always went out to eat with friends and I had no idea how to determine if something was gluten free.  How could I ask questions about gluten free food when I still didn't understand it?  I was confused, frustrated, and on the verge of a breakdown.  Unfortunately my family beach trip was coming up and I would soon learn how hard it was to go gluten free cold turkey...

Last Meal and Nap Time

The week of June 10th, I made a pack with myself.  I had my endoscopy scheduled for the morning of June 10th and my follow up appointment for the morning of June 12th.  Since I would find out on June 12th, if I had Celiac Disease, I decided that if the biopsy was positive I would eat a McDonald's bacon, egg, and cheese biscuit as my "last meal".  On June 10th, my mom took me to my endoscopy appointment.  On the way there, she asked me why I didn't seem nervous about someone putting a tube down my throat and taking biopsies of my small intestines.  I laughed and said that I would be put to sleep and wouldn't feel it.  Besides after finishing out the school year I could use a good nap!  I went into the operating room and met my gastroenterologist for the first time...three minutes before he started the surgery.  When I woke up, he and my mom were in the room.  He looked at me and said "I would go ahead and start a gluten free diet.  I still need to send off the biopsy but your small intestines are the worst I have ever seen.  I am pretty certain you have Celiac Disease."  In my drugged state, my reply was "Good!  Tell your PA I am not stupid!  She did not believe me when I told her my symptoms!"  For about 5 minutes, I felt vindicated that I had done the research and really did know that I had Celiac Disease even through few people believed me.  Then reality set in...NO MORE GLUTEN!  Lions, tigers, and bears oh my!  Going gluten free was not going to be easy...

PA Really Stands for Perfectly Annoying

In mid-May of 2014, I went to my first gastrointestinal appointment.  In order to get seen earlier, I had agreed to see a PA.  That was my second stupid decision!  I went into my appointment nervous and unsure of what would happen.  The PA began by asking me why I was there.  After explaining to her my symptoms and telling her I had tested positive on the Celiac screening, she began to review the questionnaire I had completed while waiting to see her.  One of the questions had asked about a fluctuation in weight.  I wrote that over the last year I had gained 10-15 lbs.  This was quite unusual for me.  I generally stayed the same weight but my brother had unexpected brain surgery in December of 2013 and the stress had caused me to gain weight.  Well as soon as she saw that, she stopped and said "The symptoms you say you are experiencing could be anything.  Also with you gaining weight I doubt it is Celiac Disease.  People with Celiac Disease lose weight not gain it."  (Which is not true!!!)  With her tone and how she treated me, I felt stupid.  She made me feel like I had no clue about anything and that I had wasted my time coming.  Thank goodness she agreed to test me "just to rule it out"!  Since it was the end of the school year, I scheduled my endoscopy for the Tuesday after the teachers left for the summer, July 10th.  For the next month, I worried that maybe I was wasting my time and money on testing for Celiac Disease and maybe I was just a hypochondriac...

Houston, I Think I Have a Disease Not a Problem

In February 2014, my dad was diagnosed with Celiac Disease.  Not knowing anything about this disease, I did a little research and quickly realized that I had a lot of the symptoms.  I noticed that you could get blood work done to determine if you possibly had Celiac Disease.  Since I work as the assistant principal at an elementary school, where germs are passed around as much as a basketball on the playground, it wasn't long after my research before I found myself in the doctor's office with a bug of some sort.  While there, I asked the PA (who I absolutely love) to run a Celiac blood screening.  It was obvious that she was humoring me when she agreed to run the tests and then decided that we needed to "make up" symptoms so that insurance would cover the screening.  Hmmmm...no need to make those up!  Bloated stomach, exhaustion, 5 pound weight gain some days from the morning to the evening, constipation...need I go on!  As I left, she said that she would call me with the results.  A few days later, my PA called me and started off by saying, "Well Kristin...You never cease to amaze me!  You tested positive for the screening, so I am going to refer you to a gastroenterologist for more in depth testing."  When I hung up, thoughts of the foods my dad was no longer allowed to eat starting flying through my mind!  How would I ever be able to live without McDonald's bacon, egg, and cheese biscuits, cheese, ranch, and bacon fries, and those delicious Southern banana sandwiches with mayonnaise on white, soft bread?  These terrified thoughts lead me to my first stupid decision...it was time to get gluten wasted!!!  For the next week, I ate everything I could find with gluten in it.  All of my favorite carb-filled foods found their way into my stomach...and my body began to react!  I had never been so tired in all of my life!  I barely made it through the work day, hurried home to take a nap, vegetated in front of the TV, and fell asleep early.  I also noticed that my pants weren't fitting the same at night as they did in the morning and my stomach looked like I was pregnant.  (Even a parent at school congratulated me on my baby!)  Thank goodness, after a week, I came to my senses and scaled back the gluten to a normal amount.  I began looking forward to my gastroenterologist appointment with mixed feelings about whether Celiac Disease was something I could handle...