The Diagnosis Phone Call
“Woah, woah, woah…. CELIAC DISEASE?” I questioned the nurse over the phone.
She unemotionally responded, “Yes, the biopsy confirmed celiac disease,” and then she hastily continued about my son’s other test results...she talked as if the nuclear bomb she dropped into my world was no big deal.
I couldn’t process quickly enough. I interrupted again...
“That means NO GLUTEN, or something, right?”
I had heard of the disease, but didn’t know anything about it. What is gluten, anyway?!
With some hope in my tense heart for my 14-month old son, I asked, “What does this even mean? How serious is it? Do I come in to discuss it with the doctor?”
Annoyed, the nurse hurriedly responded, “Simply look online and research it--there is plenty out there,” and moments later, the conversation ended.
BUT WAIT!
I was so lost! I didn’t even know what questions to ask yet!
I remember everything about this phone call. Where I was standing. How I had to fall into my seat. The specific thoughts and emotions that set fire through my body but didn’t melt my physically frozen state. The belief that maybe the diagnosis wasn’t real. Just maybe.
I frantically took the nurse’s advice and jumped online to begin researching celiac disease.
The online world of celiac disease was overwhelming.
Websites posted conflicting information like…
“You can’t even touch gluten or you’ll react!”
...but then other sites said you CAN touch it.
“You can eat small amounts of gluten.”
...but then other sites said don’t even lick a crumb.
“If you have celiac, you can’t have corn either.”
...but then other sites said corn is not an issue.
I was SO CONFUSED! Where could I find the truth?
Differing opinions of how to manage celiac were thrown all around the Internet. What was I supposed to believe?
I felt stuck in an endless maze as I submerged myself in research for months & months. It was like a second full-time job.
But that still wasn’t enough.
...The more I learned about celiac, the more I realized I hadn’t even scratched the surface.
I was lost.
I found plenty of information on what the disease is, but I couldn’t find anywhere to help me understand how to actually live with celiac disease.
So much for the nurse’s statement, “Simply look online and research it...” Thank you. Google sure provided…
After not finding enough online, I went to MULTIPLE dieticians/nutritionists; one even claimed to specialize in celiac disease. Even then, every session turned into me teaching them about the dietary needs of people with celiac. Uh, money back, please?!
Even a professional couldn’t help me?
Were there ANY resources out there? AT ALL?
I knew there had to be a reliable place where I could learn how to read food labels, how to eat out, which doctors to see, how to grocery shop, what to do if eating gluten free didn’t seem like enough, etc.
When diagnosed, a person already has so many emotions to deal with. There is no cure. Life is turned upside down. Life seems to crumble.
Adding emotions due to lack of support does not help. At all.
My own journey of overcoming the gluten struggles led to me creating ThrivingWithCeliac.com.
The site provides guidance on how to master living gluten-free…physically, socially, and emotionally.
I wish I’d had figured things out for my son sooner than I did. Not handling celiac disease correctly in the beginning led to many harmful chronic diseases.
Whether celiac disease is a struggle you’ve tried overcoming for years, or it’s a new-found trial, Thriving with Celiac will open your door to a normal life.
Take control of your life again & feel better sooner.
Be guided through your gluten free journey by going to thrivingwithceliac.com.