Sigh. I was super bummed and shocked to get a phone call from our Pediatrician the other day with Kyle’s blood test results showing that his blood test results tested positive for Celiac disease.
His numbers were sadly actually “off the charts” high to the point that he was beyond where they stop measuring.
The news could be far worse as everything is relative in life but I admit I was totally NOT expecting to hear that Kyle had Celiac Disease. We merely did the blood test given our family history versus any ongoing health concerns for Kyle.
Going gluten free is just about the last thing I ever considered I’d need to think about or especially manage as a Parent.
It will be a world of learning.
And I imagine I’ll need to eliminating all kinds of foods we love to eat as well to make it easier on Kyle.
Next steps for 4 year old Kyle….
My pediatrician has a plan for us. I’m crazy for my Pediatrician, Dr. Harkness, and really trust him. The quality of care my kids receive is excellent. His follow up is fabulous and he even calls me when I’m not expecting a call to check on the kids if they’ve had a particularly bad illness and so on.
First, we’ll be seeing a Pediatric GI specialist in a few weeks. Until then, we can keep on eating gluten. Hooray! This kid is obsessed with Mac n Cheese, Goldfish, and cookies just like most 4 year olds, so I can only imagine what it will be like when we go cold turkey.
The specialist will most likely do more blood work to confirm our current sky high TTG numbers and based on what I read and Dr. Harkness tells me, Kyle will need a biospy of his small intestine to ultimately confirm his celiac diagnosis. Then, of course our Pediatrician will help us create the right diet for Kyle.
My Doc encouraged me to do some major research online about Celiac so I can get totally up to speed quickly. There’s tons of info out there!
Did you know that 1 in 133 people have Celiac Disease in the United States?
The good news – Kyle is truly a healthy kid. So hopefully we’re getting this early and it will make a major impact on his future health.
He had RSV as a newborn and nearly 6 months of undiagnosed ear infections as a baby, but in the scheme of life, that’s healthy in my book. In retrospect though, when I think about his stomach, his bathroom habits are probably not normal and he goes #2 probably 4-6 times a day at least. And having 8 cavities at 3 years old is not normal at all in my book – and I can’t help but wonder if any nutritional deficiencies from Celiac contributed to his dental woes.
In the scheme of life, having Celiac is not so bad, but as Parent, you don’t want anything to ever be wrong with your baby. I feel so bad for Kyle that he’ll need to avoid gluten for life and all the great foods that contain gluten – especially socially and in school. And of course going out to eat in restaurants which we love to do as a family both when we travel and at home.
(For my local friends, we see Dr. Harkness at Wade/Townend in Paoli, PA if you need a recommendation – they are so fabulous that every day between 8:00 – 9.00 AM you actually can speak to the Doctor – even on holidays and weekends!)
I’ll be writing about the Gluten Free adventure for Kyle soon…..Stay tuned as I’m sure this is going to be a MAJOR adjustment to our lives so I’m sure I’ll be chatting about it and asking for advice since I know this is something a ton of people with Food allergies, Gluten Sensitivity or Celiac need to deal with.
Hi Colleen, So glad to have found you via twitter. I’m sorry to hear about your son’s Celiac Disease diagnosis — it’s a challenge and kind of one of those punch in the gut moments of parenthood. I’ve written a great deal about our journey with Celiac Disease and my struggle as a parent to a little one with Celiac Disease. We want our kids to have that “normal” life and while it seems like we’ll just not eat gluten that limitation trickles down to every aspect of life. It will get normal, but it’s a challenge.
There is an amazing Celiac Disease support group online and I want you to know that I’m more than willing to share our story with you and I wanted you to know that you many contact me at any time.
Blessings to you.
Rachel
Rachel – Thank you SO much for reaching out. Doctors appts. and more tests in the coming weeks and I’m guessing by end of summer we’ll need to be taking the plunge if not sooner. (Staying on gluten for the testing is what they told us to do ) I’ll be anxious to check out your blog and read your advice.
Do you have any books your recommend reading? Thank you! xoxo colleen
You can do this, Colleen! It will be an adjustment, but it’s doable. I’ll connect you with a few parents I know.
((hugs))
Hey Colleen!
Leighann told me about your son’s recent celiac dx. My oldest daughter (almost 9) was diagnosed with Type 1 Diabetes in 2005 (24 months) and Celiac in 2008 (age 5).
After her dx, we had the rest of our family tested because Celiac is a genetic autoimmune disorder — I was positive, and a biopsy confirmed my dx. I didn’t have any classic symptoms — at all. At the time, both of my younger girls tested negative, but more recently have both shown symptoms and a lab screening was “inconclusive”. They’re both seeing a GI on 6/15 to figure out where we go from here with them.
http://www.candyheartsblog.com/2012/05/and-celiac-so-theres-that.html
Nice to “meet” you, and I wish you the best on the journey ahead!
Thanks for sharing this, Colleen. Have you read http://inspiredrd.com/, by chance? Alysa was diagnosed with Celiac Disease last year and writes quite a bit on the topic.
Hi Colleen. My daughter, who turned 4 last month, was just diagnosed with Celiac Disease. We go in for her endoscopy and biopsy next Tuesday. I am already feeling overwhelmed by the changes that our family will have to make,and saddened for my daughter that she will battle this her entire life. Do you have any advice on how to explain this to a four year old? And how did your son adjust to the gluten-free diet. Any advice would be helpful.
Thank You!