Celiac Awareness Day- It's A Disease

Today is Celiac Awareness Day.

Today, like everyday, I prep my gluten free food for my family.  Today, like everyday, my son JT has to be careful about what he eats, what he touches.  So even though we are very aware everyday of Celiac disease, I am glad that more people will learn about it.

I get frustrated when people treat Celiac disease like a mild allergy or like we are all going gluten free because it's trendy.  First thing you should know is that we are very far from ever being trendy.  The second thing  you should know is that even though gluten free food has come a long way (even in the last two years) no one would ever choose this for fun.  

A gluten-filled cake still tastes a million times better, believe me.  And the cost is astronomically more.  When I walk by signs in the grocery store for loaves of bread on sale for $2.00 I feel physically ill.  A gluten free loaf usually costs around $6 and is half the size of a "normal" loaf.

But the most important thing you should know is that Celiac disease is an autoimmune DISEASE.  It is a lifelong, no-cure, disease.  If left untreated it's a harmful disease that can lead to infertility, cancer and neurological complications.

What I know about Celiac disease is that my little boy has it.  He is little, or as he says a "short 6," but strong.  He rolls with not ever being able to have the snack at school, birthday parties or after the game, but deep down it sometimes bothers him.

What I know about Celiac disease is that my heart hurts for my son.  I hate that his immune system doesn't work properly.  I worry that he will eat something with gluten and get terrible stomach pains and feel sick for days.

What I know about Celiac disease is that our whole family eats a gluten free diet at home.  Two years after we began this journey, we still have a long way to go to find a wide variety of affordable meals.

We are lucky that we can treat this disease with the right diet.  I truly appreciate that fact and I am so grateful my son can live a "normal" life.  But at the same time, I am going to stop downplaying my son's Celiac Disease.  I'm going to stop apologizing for being worried or getting upset because he's not anaphylactic.  It is a disease.  A disease that my son will have for the rest of his life.  A disease that he will have to manage and watch over.  

It is my job to find the right balance between making him understand this and respect it, but also not feel left out or let it define his whole existence.  

To learn more about Celiac Awareness Day click here.

His Drinking Problem

My son has a drinking problem.

It's not what you think.  My son  just turned 6 years old and he isn't throwing back Jack and Cokes.  But he does have a problem.

Before he was diagnosed with Celiac disease over 2 years ago, he drank, but he didn't eat.  He would drink water, milk, juice, but he didn't feel well enough to eat.  After starting the gluten free diet, he felt better, he drank less and ate more.  He got healthier.

But every now and then he falls off the wagon.  His stomach hurting, his system is out of whack because of small traces of gluten and he starts to drink, but not eat.

This summer we traveled quite a bit.  Every family member we visited on the road was kind and thoughtful about what types of food JT could eat.  Even though they looked out for him, he existed on a diet of mostly Cheetos and Sprite/milk/water/juice.  Also,  during the first week off from school, he broke his arm after he jumped off a play set.  I am sad to admit, that I have given into his drink requests more often than not because I just feel so darn bad for him.  First the whole no gluten thing, now the whole you can't go in the lake thing.  Ugh.

By the time we returned from our travels, his face was gaunt and he looked like he'd lost weight.  Even though he is so much better than before, he still cannot afford to lose any weight.

Back at home, we've tried to get him on a routine because that's how he thrives the most.  Eating at more regular times.  Grilling chicken and fish.  Cutting up fresh veggies like cucumbers and carrots that he loves.

We have been a gluten free family for 2 1/2 years now.  We should have a handle on all this.  And for the most part we do.  But I would be lying if I said we were pros.

He isn't the only one that fell off the wagon.  I too need to jump back on board and pay attention to making sure he is filling up on good healthy, gluten free foods.  I need to continue to educate myself with foods he likes that he is able to eat.

It is especially important to find a better balance for both of us because in two short weeks, he is going to first grade.  All day in school.  I will send him with a gluten free lunch and keep my fingers crossed that he eats it and doesn't trade food like my other (non Celiac) kids do in the cafeteria.

Here are a few places I am turning to for help getting back on the food wagon for back to school:

100 Gluten Free School Lunch Ideas from Gluten Freeville.com

Tips for making the "gluten free grade" at Celiac.com

Gluten free School Lunch Recipes and Tips from about.com

Cooking It Up GF Style

My oldest son, Peyton, came home from school the other day with a cookbook he'd gotten out of the library.  






He was so excited to make something, at first.  "I probably can't make anything in here because it all has gluten," he realized flipping through the pages.






But never fear!  Gluten-free flour is here!  I am so grateful that it is so easy to make "normal" dishes gluten free.  From cookbook dishes to my grandmother's brownie recipe, most recipes can be transformed into gluten free goodness.


With a quick flour switcheroo, a once gluten-filled tasty treat is now a gluten-free tasty treat that the whole family can enjoy.

This is our favorite GF flour brand.  Love it.

And my whole family did enjoy the treat--cupcakes.

And I enjoyed watching the kids figure out the recipe and work together.

And a few other things...


Politically, I don't have anything in common with Elizabeth Hasselbeck.  We in fact couldn't be more different.  But I admit, I liked her book, The GFree Diet.  I didn't buy it, just checked it out from the library.  I just might put all my political stuff aside and buy her new cookbook Deliciously G-Free that was featured on The View last week.  I mean if Joy can hang out with her, I can buy her cookbook.  Plus the food looks pretty good and I like her idea of keeping old family recipes alive and well.




Click here for more information about her books. 

Also check out this:

I am loving Kin Community channel on YouTube.  They have great videos on fashion and cooking.  This one caught my eye because it is Gluten Free.  And because it looks so good.

We Survived the Holidays-Gluten Free

We made it through it all the holiday parties, all the traveling, without any gluten problems.  I consider that a mini miracle considering the kindergarten Thanksgiving party was a disaster (the one where my kid with Celiac ate a gluten-filled cookie so he wouldn't feel left out).


But I didn't do it alone.  That whole it takes a village thing was in full effect.  From my son's amazing kindergarten teacher who said "Let's just have fruits and vegetables at our party, it will be great, they don't care about the food anyway."  And you know what?  The kids weren't upset about the menu and look how beautiful it was.  What a gift.  I feel very lucky that my son has this kind, inclusive teacher.

A classroom mom made gluten free, sugar free cupcakes (there is a little girl in the class that has diabetes) and the kids REALLY loved those.  

Christmas Eve was spent at my mother-in-law's who called ahead to make sure certain spices were gluten free.  Visiting my dad in Pittsburgh the week after Christmas went well too, he had gone gluten free shopping and had plenty of GF pasta and bread that JT could eat.  It was so nice not to worry.


It was also nice to have support and understanding.  It was nice to have the village.  
No one saying "well, it's not that bad if he has a little gluten" or "one cookie won't kill him, whatever, his throat won't close up or anything."  


The holidays were successful because my village didn't judge or make any of us feel uncomfortable.  


We even made post-Christmas Christmas cookies.  And they were good.  Really good.  "THESE are gluten free?" we all kept asking in dis-belief.  Yup, they were that good.

A GOOD READ:
This is an oldish post from October, but I love it.  I have been a big Joel Stein fan for a long time.  But it turns out Joel Stein has a wife and she is funny and lovable too...Cassandra Barry.  She and Joel have a blog on Babble Voices and they have a kid with a peanut allergy.  This was a great post she wrote and it makes me grateful for my kid's teacher and school.
 "My kid's nut allergy is bringing you down"

Sorghum What?

Sorghum Flour
Tapioca Starch
Millet Flour
Xanthan Gum
Brown Rice Flour


These are the ingredients I need to make gluten free bread for my family. Or pizza crust.   What the hell is sorghum flour? 

This list overwhelms me. The prices overwhelm me.
The cost of the above ingredients is roughly $45.  That does not include eggs, milk, oil and salt and other ingredients.  For a loaf of bread!


I almost cried the other day in Kroger as I walked by the sign hanging above the cheap white bread that I used to buy my family.  The sign said "4 Loaves for $5."  Ouch.


This weekend I had every intention to begin my journey into baking and cooking from scratch.  But I caved.  I couldn't spend the money and didn't know where to find the ingredients.


So I went back to being mix-dependent.  

But thank god for gluten free Bisquick.   Yes, it comes in a smaller box and is more expensive.  But it works and it tastes good.


I use it to make pizza crust, chicken nuggets, waffles, pancakes and corn dogs.  It is a life saver.  We usually order it in bulk from glutenfreely.com  The site has some good deals and some good information.

Hopefully, I will break my mix habit soon.  But for now, thank you Bisquick. 

A Wedding Story

My son JT, who has Celiac Disease, was the ringbearer at a wedding  on Friday night.  He was very nervous and reluctant in the weeks leading up to the wedding.  But he really delivered an incredibly adorable performance during the actual ceremony.

The bride had called last week and graciously offered to have a special meal made for JT at the reception. "Don't you even think twice about this," I told her remembering all the things that are on a bride's mind the week before the big day.  "Thinking about what to feed JT is what we do everyday, don't worry, we got this."

Sure I was trying to help her out, but there was more to it.  I don't trust any restaurant or reception hall.  Maybe one day I will, but right now, I am just not there.  It just isn't worth it to me to eat out and have him get sick for a week because someone forgot about cross contamination or forgot to mention a gluten-filled ingredient.

So, I prepared pasta that he loves and special gluten free brownies to take with us to the reception.  I really believed that whole "we got this" statement I had boldly told the bride.

The reception was a fabulously prepared feast with course after course of gluten-y, delicious food.  JT was fine with his gluten free spaghetti, but done with it pretty fast. Same with the gluten free brownies, enjoyed them, but done well before everyone else even finished dinner. He sat there in his sweet little tux and watched as the rest of the table slurped up noodles and Italian wedding soup, devoured breaded chicken and seasoned roast beef, and passed out dinner roll after dinner roll.  

"Isn't this the best soup you have ever had?" said someone at our table.  "I can't get enough of these rolls," said another.  "Seriously, I am loving this food," exclaimed yet another.  It was like a scene from a movie or tv show, where everyone talks about the subject you don't want anyone to talk about.  

With each passing dish hovering over my son's head I felt like I could hear scary JAWS-like music in the background.  I totally did NOT HAVE THIS.


So, I did what any desperate mother would do, I reached for the king-sized Hershey bar in my purse, took my son to the lobby and let him have at it. He seemed happy, but I felt like a total failure.


So, again I tell you this blog is not a place where I preach answers to readers.  It is more of a place to learn from my mistakes.  Do as I do not kind of thing.

My hope is that I learn too.  Learn to trust restaurants a little more or at the very least prepare more food when going to a big event.  And of course I hope I learn to relax a little.  During dinner I was so distressed I was ready to call it a night.  But once the food aspect of the evening was over, we all had so much fun. JT was a rockstar on the dance floor.

And someday, I hope that the statement "we got this" is true.