Monday, May 26, 2014

Sweet Faces of Celiac Disease: Meet River

River is 5 1/2 yrs. old and was diagnosed with celiac disease at 4 1/2 yrs. old.

What symptoms were you or your child having before being diagnosed?

Many. He had soft, sometimes "sandy" stool but I just thought it was because he always ate so much fruit. He never complained of belly pain but it did protrude. He was mainly just sick on and off for several months with various things like really bad ear infections, strep, ad upper respiratory infections. His ears were so impacted with wax that they had to drain them at the doctor's office several times just to reach the infected area. 

8 rounds of antibiotics in 5 months. Each time he was off he would be sick again within a week or two. In the last month or so before he was diagnosed with a blood test, he was so lethargic, that I had to carry him around the house. He was constantly feverish. He had a horrible greyness to his skin and he was constantly developing sores in and around his mouth. 

He also had geographic tongue. He would wake up at night and say he felt sweaty and that his feet hurt. He was so anemic that his iron level didn't even register as a number on the lab report. It just said "< 10". He had swollen lymph nodes in his neck that were so large, you could see them, lots of headaches, and numbness/tingling and pain in his joints and extremities.It was horrible. I remember being really scared and thinking he must have cancer.

Any other family members diagnosed with celiac disease?

No, but they have not been tested. My daughter and I have been and were negative.

How has your life or your child's life changed since being diagnosed?

He had many other food sensitivities to deal with due to the Celiac as well, so it's been a lot of learning, evolving, and trial and error. I focus on what he can have and try to make him special treats often. River is really great about staying away from food he is unsure of, and I am very thankful for that.

Being that 83% of those with celiac disease are UNDIAGNOSED, what are some ways we can encourage more awareness of the disease and its multiple symptoms?

I try to explain what Celiac is to anyone who will listen. There are so many misconceptions and jokes about gluten free as of late; it's pretty sad and frustrating as a mom to a child with Celiac. One thing I am very thankful for is that our doctor includes the Celiac test as part of the routine immune panel. I am not sure when we would have found out, if it had not been tested then, since River's symptoms were so varied.

Thanks Mom for sharing River's story. It goes to show that there ARE MULTIPLE SYMPTOMS of this autoimmune disorder. It can be very frustrating when it comes to the misconceptions of celiac or gluten-free being a fad, etc., especially when you have a very sick child.  Keep staying positive and just focus on River feeling better, because that's all that matters!

It was nice meeting you and River at the GFAF Wellness Event too. :)


  1. I really enjoy seeing and reading all these awareness and diagnosis stories. My celiac daughter also has very waxy ears. Does anybody know if there is some kind of a connection? She also complained of achy feet/ankles and has always been iron deficient. Wishing you all happy healing. Being a mama of a celiac can be so heartbreaking. I'm thankful for a community of like-minded and helpful people!

  2. I never figured out if it was the gluten or one of his many other food sensitivities (maybe yeast, dairy or a combination) that was causing the wax. When we cut out the gluten and the other food culprits, his ears got much better:)