Courage: The Cowardly Dog

My dog, Dixie, is the biggest wimp ever.  She hates water, of any form - rain, bath-time, pools… puddles.  She is simply terrified of water - a trait she passed down to her puppy (and our other dog), Meg.  Another one of Dixie’s biggest fears is getting her nails trimmed.  Years ago, mom accidentally trimmed one nail too short, making it bleed, and leaving Dixie with an extreme nail-cutting phobia.  To this day, merely saying, “cut” and “nails” in the same sentence sends her running, shaking like a leaf.  Seriously, the dog looks like she has a vibrating ball stuffed in her belly.  

Mom and I have this canine-anxiety inducing task down to an art form.  She will hide the doggie-nail clippers behind her back, while I sneak around to the other side of Dixie, armed with a piece of cheese as bait.  We pull a move that looks frighteningly similar to a WWE smack down - including me, completely spread on top of Dix, pinning her down with my legs.  And let me just say, the dog is strong - especially in the face of the evil nail clippers.  Mom manages to wrangle Dixie’s flying legs, trimming the nails as swiftly and carefully as possible.  Meanwhile, I am rubbing her ears, feeding her cheese (also known as her semi-effective tranquilizer), and whispering in her ear what a “big girl” she is.  Once the last nail is clipped, mom counts to three and we leap out of the way, as 4 lanky legs (with newly sharpened nails) scramble to get a footing.  She prances around the floor for awhile, seemingly proud of herself for surviving another round of torture.  And I swear the dog can smile.  She looks up at us with squinty eyes, rubs herself all over our legs, wagging her tail like crazy.  This is usually the pattern our doggie mani/pedi routine follows.  That is until today.

Mom snuck into the kitchen to get the clippers, hiding them behind her back as usual.  She trims Meg’s nails first - Meggie sleeps through the experience, completely unperturbed.  From the corner of my eye I see the backend of Dixie escaping down the hallway, and I swear, I saw the dog look over her shoulder nervously.  I didn’t think anything of it at the time, she often goes into the other room to sleep on daddy’s bed (yes, our dogs know my dad as “daddy”).  A few minutes later I hear mom calling for Dix.  She’s going from room to room, looking for our missing chicken-dog.  Mom walks back to where I’m sitting, “Seriously, I can’t find her anywhere!  Where did that dog go?”  

The torn, pink camo
sweater makes her
look all the more pathetic.

I get up to help join the hunt.  I know that she was heading in the direction of the bedrooms, so I begin my own search there.  The door is shut to my sister Logan’s bedroom, and Peyton’s bedroom is also clear - leaving  only my parents bedroom left.  A cursory glance of the room revealed no Dix.  I looked in their bathroom, around there bed - nada.  On impulse I looked in their closet.  And there, safely cocooned in the darkness, was a very shaky Dixie Ann.  I’m sure if she could’ve shut the closet door she would have.  She lay there, staring up at me with big eyes, as if begging not to be put through such horrible anxiety again.  

I lay down next to her, stroking her ears and speaking baby talk, “Ohhhh.  You poor thing!  Mama, we can’t cut the poor baby’s nails!”  

Mom came in the closet and we both sat with Dix, soothing the poor dear.  I snapped a picture, but she had already stood up  - so you aren’t able to capture the pathetic hilarity of the moment.  We got up and shook our head as each other, I seriously couldn’t stop laughing!  The dog literally ran and hid in the closet!  In the dark!  Oh. My. Goodness.  

I love my animals so much, life is always more interesting with them around.  They are our babies, spoiled rotten, but I love them so!

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::DISCLAIMER::

No animals were harmed in the making of this blog.

   

What is Celiac Disease?

Celiac disease, is a genetic autoimmune disease that affects 1 in 133 (approx.) Americans; though roughly 1 percent know they have it.  Due to the stereotype behind the disease and its vast symptoms, many doctors treat the symptoms of Celiac, versus diagnosing and treating the actual disease.  Though I should add, in recent years many doctors have been more openminded when testing for Celiac (kudos to those doctors!!).  When a person with CD eats something containing gluten (a protein found in wheat, barley, rye and most oats that have been contaminated), their bodies react to the gluten as an invader.  As a result of these “invaders”, villous atrophy occurs.  

Villi are small finger-like hairs that line your small intestine.  Through the villi, your body absorbs nutrients from your food.  Villous atrophy, is when the villi have basically been rubbed down, or flattened, leaving you with poor absorption of nutrients.  Obviously, the longer you have CD (undiagnosed or untreated) the more damage will be done to your intestine.  For this reason, people with Celiac are malnourished - some more severe than others.  

Symptoms of Celiac are wide-ranged, but can include:

Chronic constipation/diarrhea

Extreme abdominal cramps

Bloating

Fatigue or general weakness

Infertility/Miscarriages/Irregular menstrual cycles

Failure to thrive (especially in kids)

Panic attacks

Peripheral Neuropathy (nerve damage)

Stunted growth in children

Vertigo

Weight loss

Obesity

Anemia

Pain in joints

Pale sores inside the mouth

Osteopenia or Osteoporosis

Tingling/Numbness in the legs

Psychiatric disorders (i.e. Depression, anxiety)

A specific rash called Dermatitis Herpetiformis 

These are just to name a few.  Some people are asymptomatic - meaning they don't have any symptoms but they're diagnosed because a family member had celiac and encouraged other family members to get tested.

Undiagnosed, untreated, or refractory Celiac disease can increase your odds at many severe diseases.

15% more like to get Lymphoma and Leukemia 

15% more like to get gastrointestinal carcinoma

Your chances of developing gastrointestinal cancer (i.e. colon cancer) are increased by 40 to 100 times .

Once you have one autoimmune disease, you are more susceptible to others (i.e. type 1 diabetes, rheumatoid arthritis, hyper/hypo-thyroidism)

For these reasons, it is very important that Celiac is treated responsibly by the patient and also by those in close proximity to the patient.  

Speaking personally, this is not something that I treat lightly.  I have been asked why I don’t continue to eat gluten “in moderation”, surely it can’t be that dangerous to your health, right?  Wrong.  Accidentally eating gluten results (for me) first, in a horrible migraine, swiftly followed by stomach pains that last for hours, with lingering issues lasting for days.  Therefore, when people ask why I won’t “cheat a little”, that is my answer.  The horrendous pain inflicted after the smallest crumb of gluten is simply not worth it.  A person with Celiac can react to 1/8^th teaspoon of gluten, as small as a cracker crumb.  I find it particularly rude and insensitive when people treat CD like it is nothing, and flippantly tell you you are "overreacting".  Spend the day with me in the bathroom after I've been gluten'd... you might just change your opinion of CD... just sayin'.

Determining if a food contains gluten is the easy part, it is the minuscule traces of gluten that happen from cross-contamination in cooking preparation (for instance) that is the hardest to deal with - but, I will save that topic for a different blog.

If you are concerned that you may have Celiac disease I urge you to see your doctor.  There are a few ways to determine if you have CD.
1. Blood panel - This is how CD was confirmed in my case.  Through a special test, it is determined if you have   raised antibody levels in your blood.  Simplistically speaking, if your level is raised - you have Celiac.  To take this test you must be eating gluten at the time of the test.  Don't stop eating gluten before you take this test.  Your body will begin to heal, and the antibodies will not show in your blood.
2.  Endoscopy of the small intestine - this method is a bit more unreliable than the blood test.  Your doctor will take 3-5 samples of your small intestine through a tube that is sent down your throat.  Once they have the samples they will examine to see if villous atrophy has occurred.  It is easier to get a false negative with the endoscopy vs. the blood panel - as the doctor may inadvertently biopsy healthy tissue, missing the damaged villi and giving you a healthy diagnosis.
3.  Genetic testing - this test will tell you if you have the gene leaving you susceptible to developing CD.

Be prepared when meeting with your doctor.  If you are like me, as soon as I'm in the Dr.'s office, I forget everything I wanted to talk about.  I made up notecards with all of my symptoms, in detailed order, so I could easily communicate with my doctor.  I also wrote down any questions or concerns I had.  You only have a small amount of time with your Dr., so make the most of the opportunity by being prepared.  If you are taking any medications, bring them with you.  Taking the time to organize everything you want to discuss will be very valuable to you in the Dr.'s office. 

I hope this clears up some of your basic questions regarding the medical side of Celiac Disease.  For more information, please use the following links.

http://www.celiac.com - this one has a great forum to get information from others.

http://www.celiacdisease.net - this is from the University of Chicago Center for Celiac Disease.

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/ - this one has very easy to understand information - it is laid out very conveniently.

Rachel 

My Celiac Journey

Wow.  I can't even remember the last time I successfully blogged.  Suffice it to say, it has been years!  Myspace, baby.  I was a Myspace-blogging fiend.  Although I can't promise to update frequently, I will try my best to update once a week (or two).  Topics ranging from my latest favorite read, to my adventures in gluten free (and for awhile dairy free) living.


Recently, I have had numerous people ask me about gluten-free foods and tips on living life as a Celiac or gluten-intolerant individual.  As my first official blog, I will share my story to those of you who do not know.


I was very fortunate in discovering I had Celiac Disease.  I mean really, who doesn't want to find out they have an incurable autoimmune disease they will spend the rest of their lives overcoming?  What I mean by that is, a lot of people suffering from Celiac Disease (henceforth to be known as CD) go on for years with their sickness undiagnosed.


Though I may have experienced symptoms prior, the summer of 2009 is when they became annoyingly noticeable.  I was at work one evening when this peculiar "wave" rushed over me.  All at once I felt completely dizzy, nauseated, my hands shook, my vision turned dark, my heart was pounding in my chest, and my skin became really clammy.  After resting a moment the "wave" past, and though shaken,  I resumed work.  My co-worker has hypoglycemia and she said that it sounded like what I experienced.  When I got home, of course, I did tons of research on all things medical.  Webmd.com became my new best friend.  My first thought was type 1 diabetes.  My older brother has it, so it didn't seem like too much of a stretch, but I kept researching.  Thyroid was another suspected culprit, but it didn't completely add up either.  Two weeks after my first episode, I had another "wave" come over me (of course, I was again at work - it would be too convenient to happen at home).  I began noticing my hands were shaky on a regular basis now.  I would hand a customer's credit card back to them and notice the card bouncing around between my fingers.  Soon, more issues popped up - chronic fatigue being one of them.  Within two hours after waking up from a full night of sleep, I would feel like I drank a bottle of Nyquil.  I found myself taking at least 2 naps a day, just to stay awake at work for a couple hours.  I thought I was narcoleptic - haha - my parents had a good laugh at that one.  Next, my bones started physically aching.  It would spread like arthritis, first in my knees, then my shins, then my ankles - pretty soon, it just hurt all over.  Around Christmas time I decided I wanted to try eating healthier and working out more.  I wanted to take my starting weight and, after stepping on the scale, realized that I had lost 10 lbs. in two weeks - without me even trying!  That is unheard of for me, my metabolism is cantankerous and requires hours upon exhausting hours of working out to rev it up.  While I was pleasantly surprised, it was also a bit alarming.  Nevertheless, it gave me a nice kick start to the new healthy lifestyle I was implementing.  I switched all my grains to whole wheat/whole grain; pasta, bread, cereal, snack foods, pizza, tortillas - everything was whole wheat/whole grain.  I LOVED it!  I am a self-proclaimed "bready" so it was no skin off my back to switch.  The heartier the bread, the better!  Oddly enough, the healthier I ate, the worse I felt - and I actually gained the weight back!  Despite the fact that I was eating strictly health foods, and working out daily - often up to two hours - I was hardly moving anywhere scale/inch wise.   Needless to say, after all that hard work with no results - I was miserable!  My stomach was becoming so distended, I looked prego.  By the end of the day, my lower abdomen would expand by 5 inches - all of it bloat.  I remember one particular night I was so frustrated, I went and showed my mom.  "Oh, you're just pushing that out." she said.  But I wasn't, it was like someone stuffed a ball under my belly.


When my first so-called wave occurred, I began keeping a "health calendar".  Every night before bed I would write how I felt that day, no matter how trivial it seemed at the time, I wrote it down.  Then in the mornings when I woke up, I would take my temp.  I had heard of some people doing this to narrow down their search.  In January of 2010, I read through my calendar and noticed that my body temp became low fairly often.  There would be nights where I was huddled in my bed, under mounds of blankets, clothed in thick socks, in flannel pants, a sweatshirt, a fluffy robe, one time I even wore a scarf (lol!) and I could not stop shivering.  It was a cold that went straight through my bones like tiny needles.  During my cold spells my BBT(basal body temperature) was around 94.5 - that is considered mild hypothermia.  Crazy!  I am always hot.  I'm the kind of girl who sleeps with the fan on high even in winter time because I can't cool down.  So these cold spells were especially odd.  My body couldn't seem to regulate its internal thermometer - I knew that that had to deal with the thyroid, but I wasn't sure how.


Another thing I noticed after looking through my calendar was that I often wrote, "brain fog" on almost every day.  Slowly it was getting worse.  My short-term memory was horrible.  I would have a conversation with my mom and a minute later would, literally, not be able to remember a thing we spoke about. This happened so many times, it became infuriating - especially since it happened at work too.  I seemed to not be able to remember anything short term.  Even driving - there would be moments as I was driving home at night and I found myself at my house - when I hardly remembered driving down any of the streets to my house.  At this point I was thinking, "Oh Jesus, I have a brain tumor don't I?" Haha, well praise the Lord that wasn't the case.


It was now April, and I still didn't have any answers.  To answer your question as to why I didn't go to the doctor right away... well I didn't have insurance, and my dad wanted to wait until he got some for me.  I wasn't in school at the time so I wasn't apart of my parents plan anymore.  He had the paperwork all sent in, we were just waiting to hear back from the company.  As soon as I got the green light, I was going to the doctor!  Meanwhile, in preparation for my long awaited doctors appointment, I grabbed my health calendar and also the food journal I had started keeping, and input all of the information into a Word document on my computer.  Symptoms like - peripheral neuropathy (nerve damage), poor balance, and for a couple days in a row - as I lay in bed at night I would be overcome by these "panic/anxiety attacks".  My adrenaline would suddenly rush, my heart would race and I felt very anxious, I can only describe it as a "fight or flight" reaction.  I have never had these before so needless to say - I was freaked out!  By organizing all of my symptoms I could have a timeline of sorts at hand to show my new doctor. As I was doing organizing, a total God moment happened.  All this time I had been experiencing digestive problems that seemed totally unrelated to my neurological symptoms.  There would be moments when I would have such debilitating stomach pains, I would lay on the floor with my heating pad and try to get comfortable - but no position would relieve the pain.  No matter what I did, the pain persisted.  The four Midol's I popped may as well of been M&M's, because the intense stomach pains were still very much alive and well.   This extreme pain would happen every 3-5 months.  Not too often, but enough!  When I wasn't in debilitating pain, I was in a comparatively less (though constant) intestinal pain/grief.  After skimming though my calendar I noticed that these gastroenterological symptoms were more common than any of my other issues.


It was now May.


I was finally able to meet with my doctor during the first week of May.  We met three times during the next couple weeks - with sadly little to show for it.  She was running a series of tests on me for things like diabetes, arthritis, PCOS, hormone/thyroid imbalances, I had an echocardiogram (my heart had started causing me more problems), and a general blood count.  Everything came up A-okay.  "Normal."  She had me taking loads of over the counter meds to try and fix my gastro problems, but they only got worse.  I went home from all my appointments feeling defeated.  I felt like I was going crazy.  There was no real proof that something was wrong with me, other than my word.  Did anyone even believe me?  Did they think I was making it all up, imagining I had all these diseases?


Then, out of nowhere (GOD!) I realized my gastrointestinal problems (the intense pains and also the everyday issues) and my neurological problems were probably linked!  It was like a lightbulb flicked on over my head.  "Why had I never thought of that before?"  First thing I webmd'ed was IBS, that didn't seem to fit, but I kept reading the articles.  Somewhere in the e-pages of one article, I saw a side-note mentioning something called Celiac Disease.  Out of sheer curiosity I clicked the link that was in parenthesis.
Some of the symptoms matched, but they only listed a few - I had way more than the ones they listed.  I wasn't sold on the idea just yet.  Then I remembered that at the bookstore I work at, a month or two prior we had received Elizabeth Hasselbeck's book, "The G-Free Diet".  Ironically, I remember it because when I saw the book I thought to myself, "Wow, I could never live without my yummy - crusty on the outside, soft moist deliciousness on the inside - bread.  I would be a poor, miserable soul."  Literally, I sang my praises that "I" didn't have that.  Oh Lord, what a funny sense of humor you have. ;)


I eagerly went into work the next day, grabbed a copy off of the shelf and skimmed through the pages.  There was a more extensive list of symptoms in the book.  I ran my finger down the list, "check. check. check. check... oh dang. check. check..."  I looked up at my co-worker and said, "Well, I think I know what I have now!"  


When I got home I searched the internet on CD, and came across the website aptly named, celiac.com.  There I happened into the forum/discussion board, full of people who suffer from Celiac Disease.  As I read the stories of countless others suffering through similar symptoms, I felt fairly certain that this is what I had.  Reading personal stories vs. impersonal web articles truly made a difference for me in the area of knowing that I had it too.  I was nervous about mentioning it to my doctor because from what I read, not many doctors were to keen on testing patients for CD.  It has long been under the stereotype that only those of a Northern European decent, with pale skin, paler hair, and rail thin body could have the disease.  It was also thought that only children could get it, it used to be a standard test on babies.  I read on the forum that many people had gone years before finding a doctor who was willing to run the simple blood panel that checks to see if you have certain antibodies in your system, indicating Celiac.  After writing a somewhat brief summary of my story on the board, I was encouraged to see others respond optimistically.  They encouraged me to mention CD to my doctor, so at my next appointment, I did.  She was getting ready to refer me to a specialist, as there was nothing left for her to search for, when I asked if she would test me for CD.  Much to my relief, she agreed!  My doc is awesome.  After our appointment, I went to the lab and had more blood drawn for the Celiac panel.  The results would be in in a couple days.
The following Tuesday I got a call from the doctors office, my labs were in.  With all of my other blood work I had done, the nurse would call and say, "Everything looks normal.  Doctor said you were great."  This time I knew something was up because the nurse asked me to come in early the next morning, my doctor wanted to go over the results with me.  Wednesday morning couldn't have come quick enough!  I was so anxious to hear what she had to say.  I sat on the table in the examining room, waiting for her to come in.  A knock sounded on the door as it opened.  My doctor walked in and said with a smile, "So have you ever thought about going to med. school?" Ha.  I remember thinking to myself, "Wait.  Does that mean I was right?"  Hey don't judge, it was like 8:30 in the morning, my slow brain isn't fully functioning until at least 1pm.
"You mean... I have it?" I asked incredulously.


She handed me a pink information sheet about what CD was, how it would affect me, and what life would be like from here on out.  Apparently my lab results were very affirmative in showing for CD.  Some people require an endoscopy of their small intestine to confirm diagnosis.  My antibody level was really high, making the endoscopy unnecessary.  I walked out of the doctors office that day surprisingly upbeat!  Even though I just had a confirmed diagnosis of a disease I would face for the rest of my life, a weight was lifted off of my shoulders.  At least my sickness had a name.  I wasn't fighting some "unknown" illness for years like so many others.










I spent the rest of that day shoving my face with all of my favorite gluteny foods; doughnuts, cookies, bread, bagels (suffice it to say - I felt miserable afterwards, but my mouth was happy).

After work that night I stopped by Freddie's drive-thru and ordered a yummy cheeseburger and french fries, every bite was savored.  Of course I couldn't resist the photo-op.

Can you say, "Rachel's love language?"

The next day I went to the grocery store with my mom on our first gluten free shopping excursion.  I was completely bummed.  That was really the only moment I ever remember feeling like crying my eyes out over the loss of my food!  I am a very optimistic person (kudos to my dad for passing that on to me), and  thankfully my funk didn't last long.  Now I can say that I am loving this gluten free life!  It has been 8 months since my confirmed diagnosis and I can honestly say that gluten-filled food is hardly a temptation to me anymore.  Yes, I still find myself staring longingly at an empty doughnut box leftover from my parents breakfast treat. 

My heart belongs to fluffy crust...

 I still occasionally stick my head inside a pizza box - inhaling the beautiful, intoxicating smells.  I read a woman with CD describe it this way, "I have become a connoisseur of fine culinary scents."  I can testify to that!  I can get into the car with my parents and smell the lingering 3-day old scents of a carryout pizza.  My nose is to gluten-y foods as drugs is to a police K9.


One thing I will say, it has taken quite awhile for my symptoms to dissipate.  I have recently had extreme abdominal distention that would occur frequently throughout the month.  After much deliberation (and a run-in with my nutritionist), I decide to cut dairy out of my diet for a couple months.  Often people with CD need to take a break from dairy while their "insides" heal from the damage it has endured.  Sometimes (hopefully in my case), after healing you can slowly integrate dairy back into your diet.  We shall see.  I must say that since starting on New Years Day, I feel better - my incessant bloating seems to be going away.  Baby steps!

I know there is something I am forgetting, but I think this post is long enough.  Normally I don't like writing long blogs, but this one kind of required it.  I know how much reading the stories of others helped me when I was a just starting out, so I wanted to do the same for others out there like me.

Next I'll share some yummy recipes/tricks I have learned in my 8 months of living GF (and DF).  But I will save that for another day.

Healthy living everyone!
Rachel