Celiac Awareness For School Nurses
Imagine if all school nurses were aware of, and watchful for, celiac symptoms. Just Imagine!
Nearly 1:100 of us have celiac, yet over 60% remain un-diagnosed. (Numbers are conflicting, depending on the resource, and depending on the year you read this. The hope is that these stats greatly improve.)
There are MANY, many, many living with celiac but don’t know it. For those living with undiagnosed celiac, they are living a life that can be improved simply by removing gluten from their diet. (Even more are living with non-celiac gluten sensitivity).
Many don’t even realize just how bad they feel. It’s hard to know what it’s like to feel good if a person hasn’t truly experienced it. How many are suffering from daily stomachaches and/or fatigue and/or difficulty concentrating and/or headaches and/or irritability, and on and on. (That was my childhood!)
If that’s all a child knows, how could he/she know they could be feeling better?
*Of course, school nurses cannot diagnose children. That is not their job. But school nurses are the ones who know which kiddos have the chronic fatigue, chronic tummy aches, chronic this and chronic that. They are familiar with those who don’t feel well on a regular basis. If they understand celiac, they can suggest to parents that they ask their doctor about it.
School Nurse Conference
I had a wonderful opportunity in the summer of 2016. I was invited to present information about celiac to school nurses. A-mazing! There were 100 school nurses present at this School Tools for Nurses conference in Missouri.
All I’ve wanted to do since I was diagnosed with celiac in the fall of 2000 is to yell it from the rooftops. This was my opportunity to do some yelling. And what an important group!–those who see the students who may present with potential symptoms.
A Difference Made
I received an email from one of those nurses a few months after the conference, an email that made me cry—literally (and still does). I remembered her coming up to talk to me after my presentation. She talked to me about symptoms she recognized in her own teenage son.
It was great to hear back from her with an update.
With her permission, I am sharing Connie’s email.
Hello Ms. Simpson,
I am a RN that attended your presentation this summer at St. Claire. As I sat there and heard your story, the symptoms I was seeing described my own 15 year old son perfectly, though his pictures did not look typical.
I called Aaron’s GI Doctor and asked to have him tested for celiac disease. His blood test came back negative. Though we put him on the gluten free diet right away. In 3 days, he had incredible results. After 2 weeks, his stomach pains and bloating almost had gone, his head was clear, his breathing was better, and the cloudiness in his head had cleared. He reported he felt 90 % better.
We didn’t pursue a biopsy but believe from the results of going gluten free, we didn’t need to. He has continued to feel tons better and we consider it an act of God to have found this solution to his problem that would have gone undiagnosed for many years to come. You saved him. Thank you from the bottom of my Mommy’s heart. 😢
I will be watching for my students at my school with similar symptoms and I thank you for your work and your witness.
Education That Keeps On Giving
Connie is a school nurse who is now better informed about celiac signs and symptoms. She is informed because she witnessed it first hand. Her knowledge helps her to be on the look-out for kiddos in her school. And with the materials provided through the School Nurse Celiac Education program, Gabriel’s Journey, she (and all the other nurses who attended the conference), now has information to share with parents.
Celiac is one of the most common genetic autoimmune disorders, yet the most are under and mis-diagnosed. And to make it even more complicated, there are over 300 symptoms. As you can see below, in Aaron’s case, NCGS (nonceliac gluten sensitivity) is very real! (My son has NCGS as well. He tested negative for celiac but there is no doubt he is much better without gluten.)
*(Since Aaron never had the biopsy, we don’t actually know if he has celiac or non-celiac gluten sensitivity. As you can see through another story shared, HERE, negative blood tests do not always mean no celiac.)
*(Gabriel’s Journey was a program that was created by another celiac awareness activist who just wants kids who are sick with symptoms to have it recognized. And who better to be educated to recognize celiac symptoms than all the amazing school nurses who see our kids daily. Gabriel’s Journey is no longer an active program.)
Gluten Free For Six Months
Aaron had started lifting weights about a year prior to going gluten free, but was frustrated with the inability to gain weight. No matter how much he ate (and “he ate a lot!” according to mom, he couldn’t gain weight.)
Six months gluten free and he started building muscle AND he gained 40 pounds!