Gluten Free at Church

For a long while now, we've been accustomed to taking Becca's snacks along wherever we go, to make sure she receives only gluten free, dairy free foods. That includes taking her own snacks to Sunday School and Wednesday night classes at church. It's always been a relief to know how supportive and cooperative her teachers have been, and to know that from one week to the next they are able to remember her needs. The classes are not exactly small, so I'm sure it is no easy task keeping an eye on her around the other children and their animal crackers.

Even though I knew that our church was a community environment where I could feel safe taking my kids despite all of their food allergies and PB's celiac disease, I was still pleasantly surprised this past Sunday morning when we participated in the Communion service. As the volunteers prepared to pass around the communion wafers, the pastor kindly added, "And if anyone is in need of gluten-free wafers, please raise your hand and we'll make sure they get to you."

Wow! I'm so very proud of my church. Even though Becca was not present in the adult service, I still felt joy knowing that when she does move up, she'll be able to participate in this important observance with the rest of her family. Celiac disease does not have to mean exclusion from family and social life.

Here's good wishes for more gluten-free experiences we can all enjoy!

Antibiotics for Becca

Becca is sick. Not from the celiac this time, but from a viral/bacterial infection of some sort. She has puffy eyes, a sore throat, a fever, and loss of appetite. I wouldn't have jumped to take her to the doctor as quickly as I did, except for the call I got letting me know her playmate from this past weekend has now tested positive for strep.

Our dilemma is what to do if the throat swab they took on Becca today comes back positive. Strep is risky business if untreated...but so are antibiotics for our Princess Becca (PB). She is allergic to zithromax (gets that from me unfortunately). All other antibiotics leave her nauseated, with stomach cramping and diarrhea. And when you tell your family doctor that your gluten-intolerant child needs to have all her prescriptions include instructions that the formulation must be gluten-free, they tend to give you that look--the one reserved for uptight, paranoid, delusional, hippie parents.

Any time PB's tummy hurts, she stops eating. Since her celiac disease and hidden dairy problems have left her so tiny, I hate watching her on a self-enforced fast. Our family doctor has indicated that it is fairly safe to wait out the results of the test and to even see if Becca kicks the infection without antibiotics. On that advice, we have decided to delay beginning treatment until the results are in, which could be two days from now. I hope we are making the best decision.

Updates on the strep/not-strep and antibiotics/no antibiotics dilemma will be forthcoming.

Gluten in the Air?

So the giant pancake breakfast did not go well. She didn't have any pancakes but puked back at the car anyway. She also hated the live music. Not sure why. Now she is telling us that the music hurt her tummy. Kids and their wonderful logic.

Expanding My Food Horizons

I've mentioned that at times, Princess Becca (PB) can challenge my preconceived notions of what constitutes an acceptable food choice. Tonight, she did it again--with a little help from her father this time...

We were busy going through the motions of our snacktime conversations:

"I'm HOOONNGRY," PB whines.
"What do you want, baby?" I ask her. I don't expect a usable answer yet.
"Something yummy."
"OK. Like what? Do you want turkey? Or some ham?"
I don't get a verbal response, just a glare.

This is where daddy chimes in. He's not always home for these exchanges, and so the game of "feed Becca" still has some alure to him. (When he's home with the kids, they get two food choices. Take one or don't eat.)

"I used to eat ketchup on my soy-nut butter sandwiches," he tells our daughter.

I gasp and utter an "Oh gross!" before I can stop myself. I immediately know two things:
1) There was never any soy-nut butter in my husband's childhood.
2) He is absolutely sincere that he put ketchup on his ~peanut~ butter sandwiches.

Despite the stomach-churning idea of those foods entering my mouth together, I feel guilty for my reaction. We encourage PB to think outside the norm as she chooses foods that work for her, within her dietary constraints.

Becca gauges my level of disgust, and sides with Daddy (thank goodness for reverse psychology). "Yeah! I want that." she says.

I put a muzzle on my sensibility and give my husband a look. He knows that I will never, ever, be the one to make her a soy-nut butter and ketchup sandwich. They head to the kitchen together for a little father/daughter bonding over their favorite red condiment. I find somewhere else to be until the sandwich is gone. And yes, she really did like it. Daddy loves being right.

Where We Are Today

Becca's petite size is a source of constant worry for me. She was always little (being a preemie) but in the past year she has really slowed down. She hasn't gained a pound in longer than I can remember. I thought for sure it would turn around now that we are aggressively treating the celiac and the dairy intolerance. However, we are still waiting for the scale to budge.

For reference, PB is currently 30 lbs. My father checks her weight daily. When she finally hits 31 lbs we will have a little online celebration. I promise to decorate the blog with something very festive. For now, we'll keep letting her drink the lard through a straw.

Of COURSE I'm joking. Sheesh. I can't believe you would have even considered that I was serious.

(Honey, hide the lard before DFS shows up would you?)

Cold Bacon

Becca is never hungry in a normal sort of way. She is all or nothing. When she is not hungry, good luck getting anything down her except water and juice. But when she IS hungry she will wear you down in her efforts to keep eating, eating, eating.

So after I have pulled out, heated up, mixed together and served thirteen different foods in an hour's time, I get a little less rigid about our food boundaries. My dad has often caught me at these moments, and raised serious objections about the things I'm letting her choose.

Tonight, for instance, is one of PB's hungry times. But in addition to being ravenously hungry, she was maddeningly picky. I opened the fridge door and read off the list of items (for the tenth time) available for her dining pleasure. Ah-hah! Hiding in the back was a small batch of pre-cooked bacon.

We had a winner. I take the bacon to the microwave to warm it up.

"I want it cold!" says the little princess.

It takes me less than two nano-seconds to decide on this one. My eyebrow raises, but just barely. I rip out two pieces and fork them over. She walks off chewing happily on her prize, and I am content knowing I just saved myself fifteen seconds of microwave time and three minutes of blowing on hot bacon to cool it back down. Ain't I smart?

Emotional Roller Coaster

Any of you who know Becca also know that it is an understatement to call her a drama queen. Lately, though, it has been even worse than usual. In random bursts of massive emotional upheaval, she can bring the entire house to its knees.

I googled the terms "celiac, gluten and emotional" and found lots of threads that confirm my suspicions. People with celiac who get into gluten can suffer serious emotional symptoms that sometimes dwarf the physical ones.

So next time Becca cries buckets because we are washing her favorite pajamas, or gets herself into an extreme state of hyperactive oppositional defiance over pointing with her index finger instead of her middle one (YES she is really fighting us on this and I am horrified), I'll be sure to reevaluate our day and her diet. I bet we'll find a tummy ache somewhere in there as well.

Have I mentioned how much we hate food allergies and intolerances? But we will someday have the healthiest menu on the block. Someday--when we get this all figured out.