Samuel

Many of you know my story and the incredible fight it was to get Samuel diagnosed with Celiac Disease. For months I had watched my little toddler fade away in front of me with no answer, no one really listening, and yet, I knew as his mother something was wrong.

The defining moment in my fight? The moment when I wouldn’t back down? I was in the hospital. They were going to discharge Samuel and were telling me he was only sick because he was in a large family and was exposed to more germs.

Yet, I knew he was sick. The room was empty, and I was crying while I stared at my toddler sleeping on a bed besides me. I felt helpless. At that moment a nurse walked into the room, looked at me, and heard me exclaim, “Please, please…he needs help.”

She grabbed my hands, looked me squarely in the eyes, and told me, “You sit yourself down. Your boy is really sick. You must fight for him. Do not leave. But fight.” Something shifted.

I fought. I fought and fought and fought. And we got a diagnosis. And I still fight – for all the other mothers who are sitting in hospital rooms or in bedrooms or in clinics wondering what is wrong with their child and are begging for a simple Celiac lab draw that should be standard screening for all children.

That? That is where I’m not backing down.

I will not stop talking about Celiac Disease. I will not stop pushing for screening of Celiac Disease. I will not stop writing about gluten-free living and Celiac Disease. This? This is part of my responsibility as his mother. I won’t back down.

The new Fox movie, Won’t Back Down {release date September 28, 2012}, starring Oscar Nominees Maggie Gyllenhaal, Viola Davis, Rosie Perez and Academy Award Winner Holly Hunter, tells the story of two determined mothers {Gyllenhaal and Davis} whose minds are set on changing the system – the schools that their children attend.

They faced overwhelming obstacles and a system of bureaucracy for their children. It is a story of mothers taking a stand. Not backing down. There’s a line in the movie – about having one life to live – that resonated deeply with me.

We’ve got today. Today, and we can make a difference. We can’t live in regret, worry, and remorse – instead we need to live empowered and not backing down for those in our lives and taking a stand for what we believe in and know is right. We can make a difference.

I can make a difference in the Celiac Disease Community. I can push for Celiac Screening as needed screening for children.

You? You can make a difference as well. Maybe you talk to the mom alone at the park. Maybe you organize a school supply drive for a needy school. Maybe your city needs a safer park. Maybe you want better health options. Maybe. Make maybe a reality.

Consider going to see Won’t Back Down with a group of friends on September 28. You can purchase group tickets on their Facebook page . And make sure to stay up to date with trailers and information on the Won’t Back Down Facebook Page. Do me a favor – like their page – and let’s stand together supporting moms who believe in an issue and won’t back down.

Watch the powerful Won’t Back Down trailer – I get a bit teary watching these mothers fight for what they believe in. And then when you’re done, enter below for a chance to win one of two $40 Fandango gift cards. That’s right, I’m blessed to be able to give away two gift cards to one of you!

Moms, we can make a difference in this world. We can be courageous, fight, share, and not back down. Truly we can.

I am frequently asked questions about Celiac Disease and how we got Samuel’s diagnosis and what the biggest challenges are in living with Celiac Disease. Here are the answers to many of those questions {with cute full of life pics of Samuel} – and remember I’m not a doctor, but rather a mom, an advocate sharing her experience so please seek out medical help if needed. The biggest thing? You will find a new normal.

1. The biggest challenge in Celiac Disease was getting the diagnosis. It took months and months for doctors to figure out what was wrong with Samuel and even then the Celiac Disease test was just thrown on their lab list after I asked them to include it. It should NOT be this difficult to get a diagnosis. The initial screening is a lab test. Samuel was lucky – he was diagnosed fairly quickly {within six months of me constantly going in questioning symptoms}. However, he was crashing rapidly and ended up in the hospital twice due to the slow pace of diagnosis.

2. You cannot cheat. Samuel can never have gluten. Ever. Any bit of gluten damages the intestinal villi and starts the cycle of disease again. Celiac Disease is an auto immune disease not simply a gluten allergy. Untreated Celiac Disease can lead to another list of health problems including things like diabetes and intestinal lymphoma. It is important to distinguish between Celiac Disease and a wheat or gluten allergy.

3. When Celiac Disease is left undiagnosed it compromises the immune system. Samuel was chronically ill prior to his diagnosis {via a Celiac Panel and endoscopy} and since being diagnosed has not had the chronic illness that had been a constant in his life. In fact, prior to diagnosis he was sick every 3 weeks and now it has been 4 months since he’s even had a cold. Only difference? No gluten.

4. Celiac Disease can show up at any time. If you have a family member with Celiac Disease your risk of having the disease shifts to around 1 in 20. Make sure to not eliminate gluten before your have a Celiac Panel as you must have gluten in your system in order for the panel/lab test to be accurate.

5. Gluten Free Food can taste great. When our family first started eating family meals gluten free the options felt limited, but now, 18 months later, there are few dishes that we used to enjoy that we don’t enjoy now. It takes a bit more time, and yet, it’s very doable. Remember how I said the biggest challenge was getting the diagnosis? Well, often people will ask if it’s eating gluten free. But, honestly, even though it’s challenging I remember that eating gluten free equals life for Samuel. And that? Changes perspective. Quickly.

6. Playdough should not be played with by individuals with Celiac Disease. Playdough contains wheat – wheat gets on hands and then inevitably into the mouth. Also look for bath products {and cosmetics for women} that don’t contain gluten.

7. Eating gluten free is more expensive – if you rely on packaged foods. If you eat a great deal of fruits and veggies it is not nearly as expensive. Find products you love and stick with them. I find a great deal of our favorites at Costco, we love Udi’s bread, and I order my flour via Amazon {Gluten Free Mama, Mama’s Almond Blend Flour, All Purpose Flour, 32-Ounce Pouches (Pack of 2) – that’s our favorite} and I’ve learned to stock up on gluten free items that have a deep discount at our local grocery store.

8. Food is not always clearly labeled. Be prepared to contact food manufacturers and restaurants. Contact is good – it brings awareness. I’ve spent a good time talking to various companies and am grateful to chat with them about the importance of labeling, of providing gluten free food, and then I thank them for their time. Grin, if you ever see me in the grocery store, on my phone, while reading labels chances are I’m talking to a company about their products. In fact, just last week it was to verify that a certain spice blend was gluten free {thanks McCormick}.

9. Keep copies of your labs and medical information. Since Celiac Disease can compromise the immune system I know that when Samuel is sick that the doctors very quickly are trying to assess if it’s Celiac Disease related or just a cold/sick. I keep a copy of all of his labs {it’s a thick folder} with me so that I can simply hand over the labs so they have a baseline. This has helped him avoid lab draws twice — this is important when you’re two. 🙂

10. Find support. I’ve found great support – from his pediatrician, to my family {that pic below is of my Dad, my sweet Dad who has prayed and helped so much, with my Samuel}, to my friends, to online groups {celiac.com}, to online friends, blogs, and to the forum at Udi’s Gluten Free {where I’m a leader}. It truly helps to chat with others who are in a similar situation and who can offer advice, agree with the challenges, and can give support.  Part of my goal is to be a voice of encouragement and support in the gluten free world.

That’s it – ten things I’ve learned in the past 18 months. Do you have any other gluten free questions?

One last thing – as part of be blessed to be a community leader for Udi’s Gluten Free I get the honor of participating in monthly chats. This month I’ll be at two including one that is on Monday, July 30 at 8pm ET. Here’s the link Udi’s Gluten Free Live Chat Link, but don’t worry, I’ll remind you as well. And if you follow my facebook page I’ll put the notice up there right before it begins. The topic this time? Food Sensitivities versus Gluten Intolerance and Celiac Disease and the various testing needed.

please note: this post contains an affiliate link to amazon. for more info please read my disclosure statement. thank you.