Celiac Awareness Month: Trending: with Celiac, gluten, and a toddler

It is Celiac Awareness Month. Celiac Awareness Month is an event held throughout the United States each May and is supported by the National Foundation for Celiac Awareness (and other relevant organizations) and for this reason I share my journey to learning about Celiac Disease.

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 few years. 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?

My baby

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 and to dust mites. 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 Boston 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 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.