The Biopsy Day

For all those who are unfamiliar with the diagnosis process of Celiac Disease, it often takes many years!  On average a person with Celiac's will suffer symptoms for 10 years before the doctor will order a Celiac panel and they finally begin getting answers to the many health problems they are experiencing.  I am one of the lucky few on the lower end of that spectrum.  My celiac's gene turned on 3 years ago after giving birth to my fourth child, Anna Marie (yes she's totally worth it and no, unfortunately, having another baby will not reverse the switch).  For the last three years my health has deteriorated, my allergic reactions became out of control, I had daily migraines, scalp burning (figured this out when it began to go away), dermatitis herpetiformis (a very itchy skin rash), asthma, and so on.  A few weeks ago after having a severe allergic reaction to Thanksgiving Dinner I asked my doctor to order a Food Allergy Blood Panel & Celiac Panel.  The Celiac panel came back positive and so I was referred to a Gastrointestinal doctor for an endoscopy procedure and small biopsy to confirm the diagnosis.

Today was the big day!  I have been so proud of myself for diligently becoming Gluten Free in the past two weeks (which my doctor told me to do), that the thought of eating gluten was really unappealing. Unfortunately it is best to avoid going GF until AFTER you have completed the endoscopy so that the GI doctor can get the best picture of what your body has been going through.  BTW, our bodies are amazing creations that do a wonderful job of healing themselves when we provide the proper tools for which to do so.  My poor body has had to deal with me daily contaminating, it with a substance (gluten) that I am highly allergic to, for three years, no wonder it began to rebel.  However, just two weeks off of it and it has begun to heal itself. 

Anyways, Dr. Vong told me to eat some gluten leading up to the procedure.  Here is where there was some discrepancy:  I heard him say "You know, eat a large piece of pizza the day before or something" but apparently he also said (or meant to say), "Eat gluten for the 3 days leading up to the procedure" so that they can really see how the intestine reacts.  The pre-op appointment I had with him happened to come the day after I came down with strep throat so I might have been a little out of it when receiving those instructions...

To me, this goes to show just how much I hate getting sick from gluten.  I REALLY thought I was indulging by eating that italian cheese bread and cheesecake at 5pm the night before!   This week is Christmas and we were blessed enough to have all my family up on Christmas day (3 days before my procedure).  I did NOT want to be sick the whole time everyone was here and if you remember Thanksgiving Dinner was the day that I had a very severe reaction and some of my family was here to witness that...not fun!  As a matter of fact my mom suggested that maybe it would be better if I just didn't eat for the two days that they were up!  Of course she was just joking but she was very nervous about me having another reaction and she hates seeing me sick (although it is always great to have mom at home if you're going to get sick like that) ;)  So all this to say I was not in a hurry to eat the gluten and I knew that it was going to give me at least some side effects (and it has).  So I delayed eating gluten until 5pm last night.

I had no idea what to expect, so I was a little nervous about how much I would feel or remember about them sticking a tube down my throat.  I had heard conflicting reports but I am here now to say that the worst part was getting the IV put in.  You're not supposed to eat or drink anything after midnight and my procedure was at 11:30am so by this time my veins which are already smaller were not cooperating.  They even had to bring out this cool vein finder scanner, which my husband had a fun time playing with after they did get the IV in.  We found that he has much better veins for an IV than I do.  However, I was the one that needed it so that wasn't helpful information!

After finally getting an IV to stick, they walked me back to the procedure room. Dr. Vong came in and asked me if I had eaten that big piece of pizza.  Then he asked what else I had...opps?  I really should have been eating it over 3 days...which means I could have eaten that green bean casserole on Christmas day but oh well!  I also would have had a lot more sickness and probably wouldn't have enjoyed all the family time that I was blessed with.  Sorry, I keep getting distracted, anyways, he then said "Goodnight" and the next thing I remember is waking up in the recovery room with my husband sitting next to me.  It was quick and painless.  A minute later the doctor came in with some pictures and let us know that although there was some inflammation there was no damage visible to the naked eye which is good news.  He also said that 90% of the Celiac patients he sees do not have visible damage and that's why they take the biopsies to look under a microscope and that's usually where they see some.  All in all it was an easy procedure, I got a great nap and felt relaxed the rest of the day.  Near the end of the day the meds have worn off and my throat feels a little sore when I swallow but they did stick a big camera tube down my throat so that's very normal ;)

An Indulgent Day of Glutening

Tomorrow is the big day...the Endoscopy & biopsy to confirm the Celiac disease and document any existing damage to my small intestine.  Since I have been Gluten Free for two weeks my doctor asked me to go ahead and eat some gluten today to help him see the reaction to my intestine.  I woke up this morning and really couldn't decide what delicious gluten filled item I would most enjoy as my "Last Supper of Gluten".  I avoided it most the day trying to delay the impending reaction that would surely follow my indulgence.  Finally, at 4:30pm I was out shopping with my sisters-in-love and before heading home a sign came to me, I knew what I should have:

Little Caesar's Italian Cheese Bread & Sauce!  You should have seen me walking in and placing my order, I truly felt a little giddy.  You know, the excitement that comes from doing something that you don't ever get to do (or never will get to do again).  I suppose it could also be compared to doing something you're not supposed to do but then I'd have to accept the guilt and I was only following doctor's orders!!!  Unfortunately, I realized that since I had been avoiding gluten most of the day I better go ahead and eat some of that gluten filled cheesecake that I had stayed away from all day on Christmas!  I must say I definitely savored it and by "it" I mean a few pieces. ;)

The Aftermath:  I certainly enjoyed my indulgence of gluten however, there is reason that I will not be returning to it again.  Although the reaction was not as bad as I expected it to be it began to hit me about 8:00pm.  The typical stomach cramping, headache, brain fog, and fatigue came to haunt me just like that monster that used to sleep under my bed as a little girl.  I went ahead and hydrated myself with a few bottled waters just before eleven because no eating or drinking after midnight is allowed and since my procedure isn't until 11:30am I'm a little concerned about being dehydrated.  Hopefully I have ingested enough gluten to inflame my intestines without making me too sick!  Overall, I have enjoyed my one day splurge of indulgence on gluten.  I do feel a little guilty, maybe I didn't need the cheese bread & cheesecake but we'll see what the doc says (and sees) tomorrow!

What!! I have a Disease??

It doesn't matter who you are or when it happens, once you find out that you have a disease there will be an array of emotions that you travel through in the days following diagnose.  For me, due to the nature of problems I had leading up to diagnose my first emotion was:

RELIEF - Finally I had ANSWERS to the questions I had been asking.  Something that could explain the many health and allergy problems I have been experiencing for the past 3 years with no relief.   What a blessing! An answer to hundreds of prayers!  I have Celiac's Disease, an autoimmune disease that causes your body to produce antibodies to Gluten, a protein found in Wheat/Whey, Rye, Barley & Malt.  Basically causing me to have an allergic reaction to Gluten.  If you know someone who has been diagnosed with Celiac's on average it takes 10 years for a person to even have a doctor test them for it.  Partially because the disease tends to cause other health problems and the doctor ends up focusing on treating those first without realizing the underlying cause for these problems could actually be Celiac's.  Although it is an autoimmune disease it really is probably the best one to have because although it may not be curable it is definitely treatable simply by going Gluten Free!  This takes effort/work on your part and has a huge learning curve but it is very doable.

So there, I have a disease and I am relieved...until the impact begins to set in and then I turn a corner to find my next emotion:

DENIAL - I do not need to go Gluten Free!  I can't go Gluten Free!  Gluten is in EVERYTHING!  Maybe the test results were wrong or inconclusive.  I should probably call my doctor again and make sure that I understood her correctly when she said I needed to adopt a gluten free diet and that she believed I would feel much better by doing so.  She must not understand that I am a busy mom of four and I don't have the time or energy to make all my food from scratch.  I like fresh buttered rolls and cheesecake, *french fries and mashed potatoes and pasta and eating out for convenience sake.  No, this whole gluten free thing is really just a fade anyways right???  It can't be what's wrong with me.

*Just a note that there is no gluten in mashed potatoes or french fries (unless they are cooked in contaminated oil) but at the time of my diagnosis I didn't fully understand what did and didn't contain gluten and I thought I must say goodbye to them forever along with everything else good in my life ;)


At that point my husband yanked the wheel away from me and brought me back to the hard reality...I do not get to choose whether or not I have Celiac's Disease.  I was born with a gene for it and after giving birth to my fourth precious baby (our Adorable Annabunkin) the hormonal changes I went through must have tripped that gene into action beginning this tirade of health issues. After  seeking for 3 years this was an answer...it was a blessing remember!  So what do I do now?  Acceptance...nope, not yet, first I ran to this emotion:

OVERWHELMED - I can not handle this right now (as if I could pick a better time later).  This is when the tears came! It's time to cry like only a woman can cry.  And I did just that, I cried for fear of the unknown, fear that I wouldn't be able to figure things out, fear that I would have to eat dry fake bread and hummus for the rest of my life.  Have you ever been there before?  Overwhelmed by a health problem or maybe a life circumstance like losing your job or another car repair?  It happens to the best of us and it's okay.  That's when I got to just melt in my husband's arms and pray to our father above, first thanking him for an answer to prayer and second begging him for the strength and peace I needed to move on from this emotion.

God being the ever faithful Father did just that, he granted me the peace that everything would indeed be alright and just like every other crisis I have faced in life big and small He would see me through it.  With His grace I was able to move onto the next emotion:

ACCEPTANCE - I can do this!  I will survive this bump in the road and I will ask God to open the door for me to be able to glorify Him through this.  Once you hit this emotion you begin to accept that things will be different from here on out but that's okay and different doesn't mean bad, miserable, dreadful etc. It just means not the same as before.

Reaching ACCEPTANCE brought a new cascade of emotions:

JOY (we forget that joy is not based on our circumstances but on where we put our focus)
THANKFULNESS (that I am okay and I have a great support system in family and church)
RELIEF (remember I have an answer for all the craziness)
PEACE (everything will be okay)
LOVE (for life) 
EXCITEMENT (to learn all about this condition)

Does this mean that I will never feel OVERWHELMED by my disease again....NO, it doesn't even mean that I can make it a whole day without having moments of feeling overwhelmed!  However, if I continue to take it a day at a time, trusting God to give me what I need for each day I will be able to overcome the difficulties of this little disease and live a better healthier life for the body God gave me!

Psalm 91:1-4

He that dwelleth in the secret place of the most High 

shall abide under the shadow of the Almighty.

I will say of the LORD, 

He is my refuge and my fortress:

my God; in him will I trust.

Surely he shall deliver thee from the snare of the fowler,

 and from the noisome pestilence 

He shall cover thee with his feathers,

and under his wings shall thou trust: 

his truth shall be thy shield and buckler.