Celiac Disease Awareness--Gluten Free, Not a Choice, A Cure

Yesterday was Celiac Disease Awareness Day. In true me fashion lately, I'm a day behind. But I thought I would take the opportunity to share how Celiac Disease impacts our family and spread a little awareness.

My third child, JT, has Celiac disease. 

He was diagnosed when he was 3 1/2, a few months after Wade was born. JT had never been a big eater, he always preferred drinking a bottle over baby food and a sippy cup over lunch. He would get bad stomachaches and get sick to his stomach a lot.  But I had no idea what Celiac was. Being "gluten free" hadn't gone mainstream yet so I wasn't familiar with that either.  After he had hernia surgery, JT started losing weight and was sick all the time. He was slipping off the growth charts and was what doctors call "failing to thrive."  He couldn't digest any food. He looked like a starving child.

Once we got the diagnosis, everything changed. We got rid of the gluten in our house and in most of our life and JT started getting better. He gained weight. He grew. He got happier. He got healthier.

Going gluten free wasn't a choice, it was a cure.

Here are a few of our truths about what Celiac disease was and is for us....

Celiac disease was watching my 3-year-old waste away.

He could not keep any food down. His arms were like toothpicks. His belly was distended and hard as a rock and hollow sounding. He was pail and sickly. But he still smiled because he is JT, such a positive, sweet boy.

Celiac disease is a part of our everyday life. We read labels. We research online. We are very careful. Even a crumb can make JT sick. Our household is gluten free because JT gets sick from cross contamination and we want him to always feel comfortable and included at home.

We shop at all kinds of grocery stores and are reaping the benefits of everyone wanting to go gluten free. There are so many more products available at more affordable prices than there were seven years ago!!!!!

And duh, we still eat cake. Gluten free cake! 

When we travel, we don't think that much about restaurants. We have dinner in our room or on a picnic with the gluten free food we buy/bring. It's actually pretty awesome--we end up saving a lot of money and spending more time relaxing together. This was our spread in our tiny hotel in Atlanta this past summer.

Sadly, we miss stuff and mess up and he gets sick sometimes. One time we thought it was a gluten-free muffin mix and it was not and JT got violently ill. 

Celiac disease does not cause anaphylactic shock. Having to be so careful so JT does not get sick and stays healthy and strong has made my compassion sort of explode for other children and families dealing with any food allergy or autoimmune disease. I cannot imagine worrying about whether or not my child would stop breathing. So when a parent asks me to not bring peanuts to school, I don't and it's not a problem at all.

Celiac disease is not an allergy, it is an autoimmune disease. When JT gets "glutened" he usually throws up a lot and has severe stomach pain. He also gets very dazed and foggy-headed. He becomes very tired and can be in bed for at the very least 24 hours after ingesting the gluten. 

Celiac disease is our normal. It doesn't slow down JT for very long. He is an active, happy, pretty freakin' fantastic kid.

I love him so much. 

Here's some other information from a great web site, Beyond Celiac:

Celiac disease is a serious genetic autoimmune disease.

Celiac disease is the only autoimmune disease with a known trigger--Gluten. Gluten is the protein found in wheat, rye and barley and foods and drinks that contain these grains.

Left undiagnosed and untreated, people with Celiac disease are at-risk for other serious health consequences such as osteoporosis, anemia, thyroid disease and even certain cancers.

Eighty-nine percent of patients experience brain fog after gluten exposure. Some describe it as difficulty concentrating and forgetfulness and grogginess.

Click here to learn more about Celiac disease.

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Gluten Free Valentine's Treat (A Pinterest Poser Challenge)

Valentine's Day is this week.  

'Tis the season for sweethearts, candy, love and class parties.  Class parties inevitably mean that JT will not be feeling the love.  Oh he'll probably get 30 cutsie little Valentine's card  with SpongeBob or Hello Kitty on them and maybe even a heart-covered pencil.  But every class party or holiday or birthday or special event in the classroom usually means he can't eat the same things as the rest of the kids.  Because JT has Celiac disease. 

Lately, I have been feeling defensive about people's somewhat angry attitudes about making adjustments in schools and classrooms because of allergies, food intolerance and diseases.  I feel the need to defend that even though Celiac isn't anaphylactic, it sucks and effects JT's life almost daily.  (From constant stomach pain to full-on intense flare-ups; exhaustion and more stomach cramping; the foulest smelling gas that makes him so embarrassed; inability to concentrate at times and more.  And all of that is just his normal week on a "gluten free" diet.  If he does eat something with gluten he becomes violently ill and is out of commission for a couple days and is easily dehydrated.)

He has a stash of special gluten-free cookies that his teacher keeps in her office for situations like when someone's mom brings in cupcakes for a birthday.  And I really try not to make a big deal about it all.  In some ways I want him to experience what it's like to have to be different and not get what everybody else has.  I want him to experience that in the safe, loving environment of his second-grade classroom because he will experience that odd-man out feeling for the rest of his life in the real world.  I don't want him to feel as if people have to always accommodate or change for him.  I want him to realize he has to be responsible and bring his own cookies, his own food.

But, I will tell you, that when a teacher or parent calls me and says "we are going to have a gluten free party this time" and then asks for snack suggestions....I feel so damn grateful.  Do I expect it? No way.  Do I think it's necessary all the time? Nope.  But every now and then for people to reach out and make changes to be inclusive, especially for a kid? Oh, hell yeah, that's pretty awesome.

JT and I talk about that part too.  The whole grateful when people are nice and giving and loving and looking out for each other and sharing the love. 'Tis the season and all.

In the spirit of gluten free (GF) and Valentine's Day, I tried a GF snack/treat for my kiddos for this week's Pinterest Poser.*

Fruit Roll-Up Fortune Cookies 

*In an attempt at not being a Pinterest Poser,** every week I  detail a new Pinterest challenge whether it be a new recipe or a craft.   

**My definition of a Pinterest Poser is someone who is all pins and no substance.**

I found this "recipe" on Pinterest.  It looked easy.
First you have to buy Fruit Roll-ups, which I don't think I have ever done in my entire life.  I'm not really a fan.  But for Pinterest Poser, I did it.

I would suggest you buy plain Roll-ups, not the ones with patterns that can dissolve on one's tongue.  Um, what? How weird.

Cut the Roll-ups into fourths.

Stack two squares on top of each other.

Then use a cookie cutter circle or if you don't have one, use any circle to measure and cut out the shape.

Write out the fortunes on strips of paper.  I kicked it up a notch and stuck in a few fun things like "Stay up a 1/2 hour later" and "1/2 hour extra X-Box playing time."  The kids liked that better than "cutie," but I put those in too.

Put the message in the middle of the circle and fold in half.

Then pinch the Roll-up and push in the middle to make a fortune cookie shape.

And BOOM, you have cutsie sugar-y (some might say plastic-y) gluten free Valentine's Day treats.

I mean mine weren't perfect...look at the Pinterest ones below compared to mine. Ha, ha, ha. (Click here if you want that Pinterest tutorial, I get it, I won't feel bad.) 

When the kids got home yesterday, they got their Fortune Cookie Roll-ups and they loved them.

Have you made anything from Pinterest lately?  Any major successes or flops?  Share below in the comments or over on my Facebook page.


Here are some of the projects I've attempted--the good and the bad:

Make Your Own Magnets- click here

DIY Painted Clay Necklace- click here

Dixie Cup Lights- click here

DIY Ornaments-click here

Gluten Free Clay- click here

Make Your Own Stamps- click here
Birthday Shirt- click here
Gluten Free Pop Tarts- click here
Front Porch Kid Art Display- click here
Door turned into Table- click here

Summer Wish List Chalkboard-click here

Peanut Butter Nutella Cookie Sandwiches-click here

Painted Mason Jar Vases-click here

Cinco de Mayo Paper Flowers- click here

Earth Day Cupcakes- Click here

Nail Art-click here

Homemade Photo Booth Fun- click here

Fake Bangs- click here

DIY Subway Art- click here

Furniture Painting and Bench/Chest Makeover- click here

Thanksgiving-y Project/Gratitude/Holiday Countdown- click here
The Smoothie-click here

The Free Printable Turned Artwork in a Boring Hallway- click here

The chalk board-click here
Seven Layer Dip in Individual Cups (my favorite so far!)-click here
The pumpkin address-click here
The Kitchen Dancing Sign--click here

  Head on over and follow my Pinterest boards.

Oh yeah, and come follow me on Twitter @AngelaYBlood and subscribe to my MomPulse YouTube channel here.

A Bit Off

"Do you need to make out?," JT asked.

"What?," I asked a little surprised and confused.

"What are you talking about?," laughed Lucy.

"You know, do you need to make out or make it out," he said getting flustered.  "I mean do you need to work out, oh I don't know, I mean get it out.  You know, cry and stuff."

"Ohhhh, you mean let it out," I responded.  And we all laughed a little.  

I did need to let it out and cry and stuff.  My seven year old was exactly right.  He knew what I needed even if he was a little off with what he called it.

"Go ahead mommy, make it out," said Lucy and we all laughed while I cried a little.

This whole weekend was about being just a little off.

It started on Friday afternoon after I loaded up the minivan with suitcases and kids for what Wade called our "field trip."  He calls any trip a field trip.  This one was to Peyton's baseball tournament three hours away.  A field trip without Tim because he had to work.  

We hit the road with one mama, four kids and hopes of adventures and indoor hotel swimming pools.

Once we arrived at the Holiday Inn Express the real adventure began.

"Now this is living," exclaimed Lucy when she saw the room.  It doesn't take much to impress this princess and for that I am grateful.

Honestly, for an "express" hotel it really was quite nice.  Within minutes however we promptly made the somewhat fancy space our own.  It went from pretty and clean to looking like John Candy's bathroom in Planes, Trains & Automobiles.  If you don't get that reference, just know it's very, very messy and slightly disgusting.  

After jumping on beds and trashing our room, we made our way down to the much anticipated indoor pool which was awesomely in the shape of our great state of Michigan.  It did not disappoint.

Most of the parents of the other baseball players were hanging out together.  Most of them didn't have younger kids.  Most of them had their spouse with them to help out.  I felt all kinds of insecure--bad because I wasn't with the parent group; nervous because I'm pretty handy behind a computer screen but not the best with social expectations of any kind in real life; worried that people would mistake my nervousness for bitchiness because um, that has happened just a million times before; and a little bit like a helicopter parent because I was having issues with giving my oldest, my 11-year-old some freedom/independence to roam the hotel.  But then Wade splashed me and JT wanted me to watch his canon ball and Lucy was conducting a very important mermaid naming ceremony and you know all that.  So, I just played in what my kids called the "most awesome-est pool ever."

The next morning after breakfast we made our way to the first game of the tournament.  I read the directions wrong.  I made a wrong turn and another and another.  We were late.  I was getting tense. I was saying words that I normally reserve for when the kids are in bed or one of them breaks their arm.

"Shit, where are we, sorry kids, I shouldn't say that word, never say that word," I repeated with a variety of swear words while we searched for the field.

"There it is!," one of the kids shouted as I passed by it swearing.

I did a U-turn.  "Oh shit I think, that was illegal," I said.

"You crossed the law!," screamed JT.  "I am telling Daddy and your Dad."

Whatever.  We were finally at the field.  Peyton ran to join his team.  Then my phone rang.  It was the coach telling me I had been given the name of the wrong field.  It turns out I was the only one that had been given the name of the wrong field.  For a minute it felt like a cruel teenager joke or a plot line in one of those Sweet Valley High books I read a billion years ago.  Tell the awkward girl the wrong party and watch her show up alone. Bwahahaha!  But of course that wasn't the case here. (right?)  We got directions and sped in the right direction. (This is the moment in the story where JT asked if I needed to make out.)

"You can say a swear word if you want to," I told Peyton who was sitting in the front seat next to me.  "Because this stinks and I know you are feeling all kinds of mad and frustrated and nervous."

"Yeah, this really.....um.....sucks," he said and looked out the window.  

I sighed with relief that he felt so horrible swearing and didn't bust out with "why can't you find the F&#*ing baseball field mom!"  

We made it to the game a minute after it started it and they won.  We were a bit off, but it worked out.

Now however, I wasn't just the awkward, overwhelmed mom, I was the lost one who can't get her sh*t together.  Waaaa. A label/identity I know all too well.

We watched more baseball.  We played.  We went swimming again.  We played games.  We jumped on the beds some more.  

Lucy and Wade doing their thang.
And yes, the game is going on BEHIND them. 

And then it was dinner time and time for more off-ness.  Over the last few years, since JT was diagnosed with Celiac disease, we've gotten used to living gluten free in a gluten world.  But there are still moments when quite frankly it sucks (not to steal Peyton's swear word or anything).  Moments where everywhere you look people are eating pizza and cookies and hot dogs with buns and pasta.  Moments where every restaurant is full of gluten or cross contamination fears.  (JT has even a a few crumbs of gluten and he has intense, crippling stomach pain for hours.)  So, while the other baseball families went out to dinner or hung out at a cookout, I was determined to find food for my boy.

I came prepared with gluten free food.
I had bread for a million peanut butter and jelly sandwiches.

I sent Peyton to eat with a buddy on the team and his family.  The rest of us went into town where we not only found food but we found a street festival.  A festival with crowds of people and a band. I personally believe a good band outside will cure just about any bad feeling, it's one of my favorite things in life.  So is a crowd.

Lucy was digging the vibe and the people watching too.

I don't like being a part of a crowd or leading a crowd, but getting lost in a crowd? Oh yeah, that's my scene.  We danced in the street to the band that had a banjo player and bongo drum player, so you know they were awesome.  

Overall, it was a great field trip.  Even with the making out and crossing the law and Sweet Valley High flashback moments and getting lost and hating Celiac and feeling awkward and lost.  
It was all a bit off, but it worked out.

The west coast of Michigan is pretty sweet.
Holland is a cool little town and Saugatuck is awesome (and home to an ice cream shop with gluten free cones!!!!).

But we're also pretty glad to be back.  Back to our own little crowd that is always a bit off, but it works (for us anyway).

No Money, No Gluten, No Problem

I would never call my kids spoiled.  Taken care of, lucky, loved? You bet.  Entitled, overindulged? Nope.  I wouldn't call them well-traveled either.  

This is not the post where I explain how to get unspoiled kids on purpose.  No, no.  This is the post where I explain that all this unspoiling is just circumstance.  Four children + public education hard working husband + stay at home mother/freelance writer= not a lot of extra cash flow.  I'd like to think that if we had exorbitant amounts of money and travelability (yes, one word) that my children would remain those un-entitled, under-indulged little lucky, loved beings.  But I can't guarantee it.

For now (and the foreseeable future) we aren't the family that goes to Disney World every year.  

We don't even go to Chuck E. Cheese but that's mostly because of my son JT's Celiac disease (he can't eat the pizza and even though I know that's not why you go to Chuck E. Cheese, it just felt all wrong).  

Last week the whole Chuck E. Cheese situation changed. They now offer gluten free pizza and we set out on a family adventure (minus our 11-year-old who was at a sleepover) to check it out.

Here are a few things I discovered:
1. The gluten free pizza and process of cooking/serving at the restaurant are really good.  
2. Chuck E. Cheese is the gateway to gambling.
3. It might as well have been Disney World because my kids had the time of their lives.

Going out to dinner as a family basically stopped when JT was diagnosed with Celiac disease.  Sure you hear of people getting bun less burgers and being fine.  But those people must be less severe than my son who just needs a crumb of gluten to get very, very sick.  Just one crumb.  We worry about gluten cross-contamination and remain very skeptical about restaurants that claim to be gluten free.

I am happy to report that Chuck E. Cheese has a very good system in place.  Their gluten free pizzas are baked in a bag so they don't touch the ovens.  

They are opened at the table and guests are given their very own pizza cutter.  All of this made JT, who is 6, feel very important and happy.  He was different in a good look-at-my-cool-pizza-cutter way.

The pizza tasted pretty not horrible which is good for gluten free pizza.

The pizza situation was heartwarming, but my kids turned into greedy little ticket monsters in the game area.  I swear when they were impatiently shoving their tickets into the ticket counter, they were drooling.  It was a little scary.  They didn't blink.  A perma-grin was glued on their faces as they set upon their quest for more and more and more tickets.

My mind quickly fast-forwarded 20 years and I pictured JT and Lucy drooling over the slot machines in Vegas.  Yeah, it all starts at Chuck E. Cheese.

Shockingly they weren't disappointed when their 380 tickets only bought them a silly straw and an eraser.  

"We'll just come back and get more tickets next time," Lucy said to her brother JT.

My children were so happy and excited that night. When Chuck E. Cheese walked out to greet the crowd of kids and do a dance, my kids went wild.  

Lucy does seem to be a little reluctant with the whole dancing  mouse/rat, but JT was all over it.

Fortunately, for my husband and me, my kids don't need Disney World to be happy.  

And they don't even need Chuck E. Cheese.  We won't be going back anytime soon--it wouldn't be special if we did and holy shit it was still a lot of money for one night of cheesy fun. 

So,my advice is to live like you don't have a lot of money (either because you have to or by choice) and you too can have un-spoiled, under-indulged children.  It makes special little moments even more special.  Honestly, we feel like we hit the lottery anytime all of our children can feel happy and like they belong.  Seeing JT feel like a normal kid and not left out was pretty damn priceless.

It may not be the biggest ticket-getting game, but I love(and always will love)Skee-Ball.