It has been two and a half years since I wrote a blog entry.
It feels like both a very long and short time. Today is May 1. The date is
significant because it marks the beginning of Celiac Awareness Month. You will not see the word “Celiac” previously
in this blog because it was not even a blip on my radar before two weeks ago.
Besides watching Elizabeth Hasseleback, controversial and
former co-host of The View, confidently refuse certain baked goods on air, I
never knew of anyone who had this condition. What I know is that gluten has
become a buzz word during the last year. I have a few friends and family
members who have chosen to go gluten-free for “health reasons” or as a new
dieting regime. Admittedly, I didn't
take this seemingly odd preference all that seriously except to revel in how
annoying it was to eat with them. Sorry guys.
It was two weeks ago when my youngest son, who just turned
three, was diagnosed with Celiac Disease. He has been sick for a while. My family and I did not know what was causing
his incessant diarrhea and related symptoms. I was at my wits-end trying to find
out what going on. Why did he have a bowel movement after eating and drinking anything – sometimes up to 10 times a
day? Why was he always getting stomach bugs? What was going on with my sweet
little boy?
After surmising that food allergies may be to blame, I took
him to an allergist. Tests did confirm a couple of allergies, including one to
apples. The allergist also tested him for milk and wheat allergies, which came
back normal. I took him off apples and apple products (which are in everything
by the way) but to my chagrin, there was no improvement.
Still not knowing what to do but knowing that I needed to do
something, I decided to eliminate dairy because some internet “experts”
opined that dairy is linked to ear infections. My son has had many ear
infections, requiring tubes along with the gastrointestinal issues. I figured
... maybe. Again, not much seemed to
change.
Our once voracious eater was no longer interested in eating
anything. He would play at the dinner table with his beloved Thomas the Train
engines rather than eat. It was his older, skinny brother whose dining habits
worried us, not Mr. Boy. Mr. Boy was a tank.
His dad referred to him as Bam Bam. But Bam Bam was starting to lose
weight. He was often tired and his
constant movements resulted in brutal diaper rashes that would cause him to
scream out in pain while being changed.
Nothing helped. We were at a loss. Me. His dad. His Nana.
His daycare provider.
When he turned three earlier this month, I took him for his
annual exam and brought up the issue once again. Our pediatrician said that he
had Toddler’s
Diarrhea, which may have been causing the issues. She asked about his diet and I
began to list his favorite foods: waffles, pancakes, peanut butter and jelly
sandwiches, and it dawned on me – gluten. Damn-it. Gluten, that trendy little
bugger. It was one of those come to whomever moments. How could I have not
thought of this earlier!? I should have
known.
Immediately, I stopped the medical student who was training
with our pediatrician and excitedly shared my revelation. I asked her to tell
the doctor the connection I made. The doctor came back into the exam room and
said that she had the very same suspicion, but thought it was unlikely. She
would run some tests. A few days later,
the blood tests were in … Celiac Disease.
While in a daze, I wrote down what the doctor was telling me
on the phone - "Celiac", "gluten", "small
intestine", "endoscopy" ... "Children's Hospital" -
while The Boy ate something that may or may not have had gluten in it in the
kitchen with the rest of the family.
She explained that she was going to schedule an appointment
with the Chief of Celiac at Children’s Hospital and less than a week later
(this past Tuesday), we had our appointment.The specialist confirmed that Celiac is to blame for many of
my son’s health issues and in order to confirm the diagnosis, he would need to
do a biopsy.
This surgery will happen in the next week or two and then we
will forge full-speed ahead into a gluten-free lifestyle – for The Boy and likely
for the rest of the family as well.
We have already started him on a GF diet, although we were
advised to keep some gluten in his diet, so that the endoscopy can do what it
needs to do and confirm the disease. It is so counter-intuitive to knowingly give
a child, your baby; your baby who has been suffering for so long, something
that we know is hurting him. But … doctor’s orders.
As soon as I learned of my son's Celiac, I did what people
do in 2014, I started researching the topic online. I came across a tweet from
the National Association for Celiac
Awareness and that in acknowledgement of Celiac Awareness Month, they were
looking for folks who want to blog about their experience, so here I am, two
and a half years later. Ready to embark
on yet another journey.
