We Are Loving

There are lots of good things going on right now.  

Celiaccentral.org--I love this web site from the National Foundation for Celiac Awareness and following them on Twitter (@CeliacAwareness) has taught me so much about Celiac disease and being gluten free.    Love!  Click here for more nfca.

Rocco Dispirito's Gluten Free  cupcakes on Anderson!

Brownies we were given as a holiday gift and love!  They are very rich.  When my husband told my daughter that she replied "Let's steal from them."  And yup, they're that rich. And that good.

Looked them up online and they have quite a few great gift gluten free gift baskets for the holidays.  Click here for more info.

Twitter.  Follow me at my new Twitter account: @aglutenfreefam

You Think You Know...

My son was diagnosed with Celiac Disease almost two years ago, when he was weeks away from turning 4 years old.   My husband and I dove into finding out everything we could about the disease and what it meant to be gluten free.

Of course the first thing we did was head to Whole Foods and buy a million gluten free labeled items.  We even took a cooking class there.  It was great information, great food, but we simply couldn't and can't afford Whole Foods.  So we slowly learned what to buy online and at the Kroger down the street.


I thought I knew how to handle living gluten free.  But just like when a baby masters a certain phase and you think okay, I know what I am doing, they move onto a new phase.  That is what raising a child with Celiac is like in my opinion.  

Some days my little guy who is now 5 (and don't forget the 1/2, 5 1/2 he is quick to remind you and anyone else) is feeling great and handling being the odd man out quite well.  Other days it gets to him.  I can tell he just gets tired of being different.  He is too young to understand how lucky he is that his disease can be managed with diet and not medicine, needles or surgeries.  At 5 (and a 1/2) fitting in at snack time is a BIG deal.


I thought I knew how to handle helping him.  I thought I knew a lot.


But it took going through my own digestive issues to really have a better understanding.  Last summer I started feeling just all around run down and bad.  My stomach hurt and after every meal my stomach would be so bloated I looked four months pregnant.  This went on for months.  Until I got pneumonia in September and didn't eat for a few days.  Even though I was bedridden with a terrible illness, in some ways I felt better than I had in months.  My stomach wasn't bloated and it wasn't hurting.  That is what prompted me to go the gastroenterologist. 

Lovely picture of me.

Bloodwork and an endoscopy showed that I do not have Celiac, which surprised me.  I am still in the process of finding out what exactly is going on with me.  But I do know this....not eating gluten (and most dairy) makes me feel better.  


So since a week before Thanksgiving, I  have been gluten free.
You'd think it would be easy because we are a mostly gluten free household, but it has been surprisingly difficult.  Especially around the holidays.  


Lunch with a friend is different.  I suggest meeting for coffee instead because it is just easier.
Every rest area on our road trip was different.  My son and I ate McDonald's fries while the rest of the family pigged out on a fast food treat.  The continental breakfast included at our modest hotel had nothing I could eat.


I am old enough to know that I should be grateful that a seemingly simple dietary change makes me feel better, makes my stomach hurt less.  And I still felt a little left out.  A little different.


And I grew skeptical and cynical.  I didn't trust restaurants that said "gluten free."  Or well-meaning friends that probably accidentally used the same knife to cut regular bread and gluten free bread.


I sort of lost my mind, but I gained a whole new appreciation for what my son has to go through.  And what he will go through.  From the mistrust of food to the stomach pain when he is "glutenized."  

My advice to all parents of children who are newly diagnosed with Celiac disease is to go a week or two without gluten anywhere.  No exceptions.  Just to get a taste of what their child's experience is all about.  Because you may think you know, but you don't.

Here's a story...

Here's the story of a man named...okay I was going to start out as a comparison to The Brady Bunch.  But we aren't that family.  Our story is not about blending kids from first marriages and we don't have an Alice and even though I think we are cool, not sure if we could carry off a dance routine like the Bradys.

Our story is about giving up something, discovering something and coming together.  And funny enough, it revolves around gluten or rather giving up gluten.


When I tell people that my son, JT who is 5, has Celiac disease, most of them say "oh it is such a good time to be gluten free, it's everywhere."  I nod and grit my teeth.  They have a point, but they also have no idea. No idea that gluten is in so many things.  That you have to be super vigilant about food, toothpaste, shampoos, medicines and more to keep your kid healthy.  And bottom line, gluten cupcakes (pie, cakes, bread, etc.) taste better no matter how good the gluten-free recipe is.


People don't know, and honestly I don't even know, how much Celiac disease affects people.  Everyday they (the researchers, scientists and such) are learning new ways the body and mind are affected by gluten intolerance.  I will swear on a stack of bibles that JT's speech delay is genetically linked to his Celiac gene. Scientific proof?  Not yet.  But seriously, everyday.  Everyday, they are learning new things about what gluten can do to a person that suffers from Celiac disease.


Gluten free does seem to be a trendy thing.  The first time in my life I am trendy.  Of course it can't be some trend like skinny jeans.  And just like skinny jean haters (me included) there are gluten free haters.  People think it is just that, a fad.  And that is where I have to say Step Off, Suck It or a whole hell of a lot worse.  


You see haters, or doubters, my son would gladly eat gluten and be a more "normal" part- of-the-group kid in kindergarten.  He would be beyond happy if his mom didn't make a big deal at every restaurant ensuring the gluten-freeness of their so-called gluten-free menu.  


But he can't because one little crumb or bite of a cookie, makes him double over in pain. He sometimes vomits profusely or has diareeah for days.  Gluten makes him get lost in a fog, lose his balance and sleeps off and on until the it leaves his body for good.  He misses school, hockey practice and precious time with friends and family.  


The decision for our whole family to go gluten free happened mostly because my youngest was 6 months old and I was overwhelmed and didn't think I could keep the house organized as gluten and non-gluten.  But it quickly grew into something more.


Our home became the safe place, a place where JT belonged and didn't feel different. It became a lesson to all of us in teamwork, being supportive and sacrifice for people we love.


The kids are not perfect.  During choir practice at church, instead of sacrificing her gluten-filled donut snack because her brother can't have one, my 7-year-old daughter Lucy gladly says "I'll have JT's."  And proceeds to gobble it down.  


But we are doing our best.  Most of the time.

Last Friday, JT got off the bus and said, "Mommy, I had gluten today."  At his kindergarten Thanksgiving feast.  My heart sunk.  I had taken every precaution, I had spoken with the teacher, emailed reminders, sent in safe foods for him to eat, sat with him and had the talk, making sure I made the ever-important eye contact.  But JT felt left out.  He asked a buddy for a cookie and he ate it.


Within hours he was crying from stomach pain and then came the vomiting.  


He is so young to get this whole eating-this-will-make-you-sick idea.  He just wants to be normal and fit in.  It doesn't help that he still is a bit speech delayed and has trouble with numbers.  Poor kid just wanted a damn cookie.

One tuckered out little turkey, after a kindergarten Thanksgiving feast where he was glutenized.

And that is why a gluten-free, worry-free home is so important.  So we will keep trying, keep learning and keep growing as a family. As one big gluten-free family.

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.

Gluten Can Suck It

My son JT is what some people would call a light bringer.  He is this little spark plug of something wonderful that makes people feel happier, lighter.


He is the kid with the sly smile you can share an inside joke with, and he loves being an insider.


He is a middle kid who spent the first three years being "the baby."  As in "who's got the baby?" or "where's the baby?'  Now the new baby, Wade, fills that role nicely.  And JT is in the middle.  He so wants to be loved by the older kids and play the games they are playing.  He will play tackle football with his big brother and never give up, ever (it is quite insane).  He will play dress up with his big sister and let her run the show (quite frankly his sister Lucy won't play with him, or even let him in her room, unless she runs the show).

When he is included, he feels the love.


A little over a year ago,JT was failing to thrive.  He was losing weight, he was sick all the time.  When he first started to get sick, it just seemed like he was being really unruly and cranky.  We thought it was because of the new baby, Wade.  We overlooked other symptoms and tried extra love and attention.  Didn't work.


He started to have severe diarrhea. We thought it was nerves.
He started to have massive, I mean massive, fits all the time.  About everything.  It was hard to take him anywhere.  He was miserable.


He was already speech delayed, but his progress stalled completely.


He started throwing up frequently.  He had no energy.  And he was losing weight.


One afternoon when I laid down next to him to settle him down for a nap I thought he was laying on some hardcover books.  I went to move them and realized I was feeling his bones, they were sticking out that much.   I gasped and yanked my hand away.

This was how sick my sweet boy was.  He looks like a malnourished child you could help with only the money it costs to buy your coffee.

  
What the hell was going on?  I took him to the doctor and thankfully got a quick diagnosis of Celiac Disease.  The only thing I knew about Celiac Disease was that Elisabeth Hasselbeck from "The View" had it.  I was in shock that my son had a disease and the fact that the conservative chick on "The View" and I had something in common.


I immediately went on all kinds of different web sites and spoke with a dietician.  Long story short, JT has an autoimmune disease that makes it impossible for him to process gluten.  And my friends, gluten is in a whole hell of a lot.  Food, medicines, soaps, shampoos, candy.


This blog post is starting to feel like a very special episode of a sitcom.  Where at the end I would do a short psa and give a 1-800 number in case you need more info.


Okay, it is a very special blog post and I will give you a number and web address for more info.  Because damn it, discovering JT's Celiac Disease saved his life and I am forever grateful.

BEFORE

AFTER

But it also changed all of ours.  We instantly changed our whole family's eating habits.  We decided the whole family would go gluten free.  Our grocery bill quadrupled. No joke.  And we are not a family who can financially handle a quadrupled grocery bill.  
Out of all of this actually came a keener awareness and appreciation for food.  Quite simply, because we can't afford much. So there is not a lot of waste around here.

Sometimes my husband and I have been known to sneak gluten food in the back door after the kids have gone to bed.  

It is like we are drug addicts getting a fix and then we do feel a little guilty after.

We have all been gluten free for over a year.  My other kids do not have Celiac and they can have gluten when they are out of the house.  But we decided to make our house a safe zone where JT didn't have to worry about feeling left out--he's included.  He feels the love.

And he is doing great...growing, gaining weight, speaking better. Thriving.


So in the words of another one of my comedic favorites, Kathy Griffin, Gluten can suck it.

If this special blog post was too much, please enjoy a clip of one of my favorite comics. She is raunchy and she swears. Love her.