Sunday, May 19, 2019

Sweet Faces of Celiac Disease

This May, I'm dedicating Celiac Awareness Month to the Sweet Faces of Celiac Disease. There are many children like Jack, who have been (thankfully) diagnosed, but they all have a different story to share.
I've been collecting stories of children with celiac disease in hopes to show that NOT every child has the same symptoms.  Reading these stories, I was shocked to see that many did not have the same symptoms as Jack.

Meet the Sweet Faces of Celiac Disease (pictures included):

Grace                     River                    Kaydee       
Rebecca                Keira                     Sage
Caleb                     Liam                    Emily/Allison
Sarah                     Elise                     Samantha
Ashley                   Sarah                    Liam
Aydia                     Lauren                 Thomas
Bailey                    Jessica                 Amelia
Steven                   Ryan                     Fina
Cyrus                    Ashlee                   Cole/Ella
Chris                      Ruby                     Lexie
Taylor                    Miles                     Jacob
Adalyn                  Virginia                  Nate
Hadley                   Brian                     Toby
Kendra                  Dylan                     Adeline
Valencia                Andrew                 Claire
Nolan                    Peyton                   Trevor
Weston                  Jayda                    Ashton
Isobel                    Spencer                 Ericalyn
Adisyn                  Clare                      Harrison
Izabella/Ashton    Aden                      Logan
Maggie                  Mara                       Delia
Enzo                      Ellie                        Nancy
Juliana                  Nick                        Aaron
Hannah                 Briella                     Poppy
Ryleigh                  Henry                     Cam
Ava                        Collin                      Chase
Lilly                       Jackson                  Wyatt
Delmer                  Aiden                     Adam
Cierra                    Lizzie                      Grant
Hayden                 Abigail                     Izzy
Gabriel                  Jersey                     Ashley
Paisley                   Amelia                    Parker      Maddie/Sydney    Kiersten                   Alli
Bella, Madilyn, Lily, Jonathan

Thank you Sweet Faces for sharing your story with others.  Stay positive, keep smiling and remember, you're not alone on this journey, there's other kiddos just like you!

Wednesday, May 1, 2019

20 Ways To Raise Celiac Disease Awareness

Raising awareness for celiac disease is MUST.  Not just during May, BUT any time an opportunity comes our way.

Since starting this journey almost 10 years ago, I can honestly say that more people know about celiac disease. BUT, then I'll turn around and mention "celiac disease" to someone and they will look at me confused, like, "What is that?"

So needless to say, we still have a ways to go.

The more people that we can educate about celiac disease and gluten-free living, the better off the future will be for our children. We gotta think POSITIVE, right? RIGHT!

Here are a few ideas that you could do this month and throughout the year.


1 - When ordering food at a restaurant, ask for the manager or tell the server that you have celiac disease. Don't just say, "without the bun" or "I have a wheat allergy"....educate these folks even if they just say, "uh-huh".
You also know enough about gluten-free living, that you could create a little note card with how to handle your gluten-free meal: WHAT TO AVOID (for example: DO NOT share same deep fryer as GLUTEN foods, wash kitchen utensils, check ingredients for "WHEAT", etc.

2 - To help better serve those with celiac disease while at school, college and/or camps, this website and material is AWESOME. Check out NFCA's GREAT Gluten-Free Kitchens training.

3 - Start or join a celiac walk in your area and raise funds for the Center for Celiac  
       Research -  MakingTracks for Celiacs

4 - Pass out green apples to teachers with a note about celiac disease. 

5  Make awareness bracelets and give them to your friends and family.

6 - Or RAP it, "Let's talk about celiac baby, let's talk about gluten and me, let's talk about all the good things and the bad things that may be...let's talk about celiac, let's talk about celiac..." (Salt-n-Pepa)

 7 - Get a blood test, whether you've done it before or not - get another. Encourage family and friends to do so as well. If a family member tested NEGATIVE 5 years ago, I would encourage to test every 2-3 years whether there are visible symptoms are not. My husband tested negative when Jack was was diagnosed in 2009.  Then after moving to TN and taking on a very, very stressful job, his immunity changed. He tested positive for celiac disease. It's crazy how it all came about - I share my husband's story here.

8 - Car Ribbons/Magnets - these days you can have your own made! Just google "create your own car magnets" or "celiac ribbon car magnets".

9 -  Are you concerned about another child, but don't know how to tell his or her mother? Pass along this link - it warns of "Red Flags"- some pediatricians may overlook certain celiac symptoms. 

10 - Make up ANOTHER song, "I just called to say get tested...I just called, to say how much I carrreeeeeeee, I doooo." (Stevie Wonder)

11 - Visit University of Chicago's Celiac Disease Center

12 Share celiac disease information with a stranger - "Hi, I don't know you, but here's some info. about Celiac Disease."

13 - REPEAT #1 

14 - Read/Share some of my Sweet Faces of Celiac Disease stories. You'll be surprised by some of the symptoms this children had or DIDN'T HAVE.

15 - Check out these AWESOME Celiac Bloggers.

16 - Share this celiac disease symptoms checklist with your friends and family.

17 - Get friends and family to attend a FREE celiac disease screening.

18 - Check out NFCA's site on "Talking to You  Friends" about celiac disease.

19 - Make a donation to the Celiac Disease Foundation - make sure to check out their website as it's full of all types of great information on celiac disease and gluten-free living.

20 - Get a TATTOO! Okay, don't. But this was something I REALLY wanted to do to show my passion for raising awareness and if someone asked me about my tattoo, it's an opportunity to educate them about celiac disease.

There you go friends. 20 Celiac Awareness ideas. 

For more information on Celiac Disease, check out these following links here on Raising Jack with Celiac: 

Celiac Testing
Genetic Testing