Gluten-Free Girl, One Year Later

Today marks the one-year anniversary of Beth's endoscopic biopsy, and then October 30 is the one-year date of when she officially began her gluten-free diet.  It's been a whole year already.

Going through some of my old blog posts from last year brought me to tears.  Finally realizing why Beth had been in pain for so many months. Her first tastes of gluten-free bread and pasta- she loved them.  Watching her clothes get smaller as she grew taller, watching her bloated belly thin out.  Noticing short, sweet hairs growing on her precious little head... Hairs I didn't even realize she had been missing.  The dark bags under her eyes... Gone.

Gluten-Free Girl

Miss Bethany has been gluten-free for over six months now!  Friday we had a routine checkup with our ped GI.  Since late September, our first visit with him, Beth has gained 3.5 lbs and grown 2 inches!  If there were any doubts in her growth, in September, she was 47th percent for weight and 35th for height.  Now, she's 54th percent for weight and 40th for height.  The doctor said her growth is great but we'll actually see an even bigger change in the upcoming year, assuming she has no issues she'll go back to see him next May.

No more Play-Doh

 

Since regular Play-Doh is filled with gluten, I've kept it away from Beth because it gets all up under her finger nails which inevitably go into her mouth.  I've come across a couple of gluten-free play doughs and was going to make a salt dough, but I just made it a little easy on myself and splurged on a four-pack of Aroma Dough.  They have always looooved playing with Play Doh so it's been a long few months while I figured out what to do, and they are so happy to have something to play with again!  Aroma Dough smells so yummy and is free of dyes and perfumes, and works and feels just like Play-Doh.  They can't mix the colors but that hasn't been an issue yet!  Since it's gluten-free I can let them use our cookie cutters from Uncle J and Aunt R- thanks y'all!

Waffle Face

My two oldest are now waffle fanatics ever since I discovered Van's gluten free waffles.  They eat them with maple syrup and frozen blueberries on top; needless to say this is a very sticky and messy breakfast.  They love it, and it's hard for me to say no!

Gluten-free baking and other thoughts

teff muffins with apples and carrots

Initially, I don't think it's any secret that gluten-free cooking scared the heck out of me.  I couldn't imagine a life without bread, not being able to fall back on eating out occasionally, and I thought I was going to miss "easy" meals-like frozen pizza- for difficult nights.  I'm not going to lie, it's not all fun, but now at 2 1/2 months into the mission it's already becoming second nature.

I've become very dependent on a couple of recipes that I feel work out pretty well for us, Elizabeth's sandwich bread and pizza crust. I use a boxed muffin mix if we decide to make muffins, but I'd like that to soon change. Everything I've made so far has been very dependent on brown rice flour, which has fiber but isn't the powerhouse I was hoping for. Just scanning the aisles at the grocery store turns up some interesting flours I'd bet most people haven't heard of before- Garfarva, teff, sorghum, arrowroot, quinoa to name a few. Did you even know flours could be made from beans or nuts? Before going gluten-free, I had no idea! Bean flours are really high in fiber and protein!

So my question to the world is why don't we make healthier breads?  Why is all-purpose white flour the standard when we could be receiving nutritional benefit from using other flours?  I know the answer... It's easier and usually cheaper.  For our family, I'm glad to be introducing so many rich flavors by using different kinds of flours, and providing learning opportunities as we bake together.

I've come to the conclusion (through my own experience in addition to reading lots!) that gluten-free food is never going to taste the same as gluten-filled food.  That's okay for me.  I've stopped trying to find the perfect substitute and have embraced the different flavors and textures, and am now just trying to find what we like.  Beth and Luke devour the sandwich bread I make!  I like it fresh out of the bread machine but don't prefer it just plain out of the pantry, I like mine toasted with some peanut butter or almond butter spread on top!  There have been a couple of times when I've craved a crusty, fresh loaf of French bread but that's just not going to happen at our house.  That is also okay for me.  Since my celiac blood test came back negative and I have no symptoms, I will enjoy an occasional treat when I'm out alone without the kids. :-)

If you decide you'd like to try something new, brown rice flour is an easy taste transition, but for baking it's generally not as easy as switching a gluten-free flour for white or wheat flour.  Gluten-free flours have different textures, consistencies, blending abilities, absorption rates... Everything I've read says it's best to blend several flours to achieve the best texture. Corn starch makes breads springy, xanthan gum is the glue that keeps breads together, and various flours and other starches each have their place.  Going gluten-free won't necessarily benefit anyone other than non-celiacs or people who have wheat intolerance (although some people believe it helps lessen children's ADHD symptoms-don't ask me, I don't know much about this), but mixing in a little gluten-free foods every now and then will definitely open your taste buds up to a new realm of eating experiences.  Overall, I think it's better for us because we're getting more health benefits from the foods we eat, maybe that's why gluten-free diets have become trendy?  In any case, I have so much more to learn!  After the next 16 years of watching Mommy cook gluten-free, I expect one day Miss Beth will have her own recipes to share with you. :-)

Another "first haircut"

Luke had his first haircut a few weeks ago, where I trimmed the top and sides a bit to keep him from looking like Bozo the Clown! Ryan and I couldn't bear to trim his "piggy curl" then, but the time has come. The weather is less humid now, so it's less of a curl and more straight, which means his haircut was looking more mullet than ever! So, away it went.


No huge change in my opinion. The big change for me was that very first haircut! It's a little sad that it's gone but I have a feeling it will be back, what little hair he has is pretty textured in the back!

Monday afternoon was Beth's last ballet class for the semester. After class was over her teachers gave all the girls in her class a goody bag full of homemade chocolate-covered pretzels. All the girls were so excited, but my heart sank- I wasn't ready for this. Beth proudly brought her bag to me and I excitedly took it and said how nice it was of her teachers, but that the pretzels weren't gluten free. She started to look a little worried but I quickly assured her that we could make chocolate-covered pretzels at our house with her special pretzels, and assured her we'd do that later that night. I asked her if she wanted to give her pretzels to a friend and she handed them right over, no questions asked. On the way out I started to cry a little because I was so proud of her. I can't believe how mature she is for such a little girl!

So that night, we made chocolate-covered pretzels. And they ate them, very happily. :-)

Bread!

This morning we made our first loaf of gluten free bread using our new toy, a Zojirushi bread machine. We bought the bread machine a few weeks ago anticipating the need for it, but today was our first time to use it. Last night I prepped for this by having a handful of different flours ready to go, xanthan gum, yeast and all sorts of other supplies, but wouldn't you know I didn't have a 1/8 measuring cup? I used two tablespoons instead and it seemed to work out...


Beth and Luke "helped" by closely observing, dumping the cups into the bowls, and whisking things together. I want Beth to be as much a part of this as I am, watching me and learning together as we go. This is her new way of life. We'll be doing a LOT of baking (pizza crusts, hamburger/hot dog buns, breads, muffins, biscuits, rolls, cinnamon rolls, croissants...the list could go on for quite awhile), can you imagine what a good gluten-free baker she'll be as an adult?

The bread smelled delicious as it cooked, and came out of the machine pretty easily. I let it cool before I sliced it and let Beth have the first bite. She declared she didn't like the "skin" (the crust) but that she liked the white part! She ate a couple of pieces and then asked for Halloween candy. ;-)

Personally, I thought the bread had a funky after taste, but the texture and consistency was pretty perfect. It looked just like regular bread! It was made using chickpea flour, tapioca starch, and cornstarch in addition to regular bread ingredients. I'd say overall our first gluten-free baking experience was a success!

My pantry is also finished. Here it is, fully stocked and ready to go. The top shelf is for items that contain gluten (oatmeal for Luke, chips for Daddy, wheat Chex for me). The shelf below is breakfast items, canned items and broths (oh yes, and some gluten-free Halloween candy). Next shelf is snack items, dry beans and pastas, and the shelf below is my baking supplies and extra items. The bottoms shelf is for pantry vegetables, Daddy's Dr. Pepper, and all of the extras I ordered from Amazon to keep us stalked up on some more gluten-free items.

My fridge and freezer are a different story though, it's so empty that it's making a rattling noise from not having enough weight. We'd gone through all the frozen foods in the freezer so that I could make new foods to stock up (homemade pizza crusts and premade foods for nights when I'd usually get takeout for an easy dinner), but I haven't put anything in there so there's just some lonely frozen fruits and veggies. I don't know why the fridge is so empty, probably because I haven't been cooking enough lately to create leftovers!

The results

I talked to Beth's pediatric GI doc yesterday. He said the biopsy indicates celiac disease, and with her high numbers in her blood test result in addition to her symptoms that he most definitely recommends a gluten free diet.

It's bittersweet. It's nice to have a firm diagnosis so that we can treat her. It's good that treating her is merely a matter of diet change, and that she's so young that she'll most likely not sustain any permanent damage. She probably won't even remember the days when she wasn't gluten free.

On the other hand, it's still a big change. It might sound silly but I mourn for her that she won't have a no-worries lifestyle, that her life won't feel "normal." I know I KNOW that no one really has a "normal" lifestyle, that we all have our concerns, that it's not that big of a deal, yadda yadda... But seriously, as her mom, I need everyone to understand that this IS a big deal. Right now, at this time in her life, in my life, in our lives. I know we'll get through it and figure it out, but let me have a little time to be sad for her. Everything in life revolves around food, most social gatherings involve food of some sorts. Just today we had our All Saint's Day gathering of home school families and it was a potluck- I was first in line with a few other moms of children with allergies, picking out the foods that our children could eat. I am so lucky Beth loves raw veggies and fruit because otherwise all she would have been able to eat is the pasta dish that I brought. So, I know this isn't about me, I know we'll all get through it. I just need a little time to be sad for her.

That being said, I still appreciate everyone's prayers. We've always prayed for God's will to be done in our lives, and while I don't believe God "gave" Beth celiac disease, I believe he's given us the means to get through this. We will continue to pray for God to give us whatever we need to bring us closer to Him. Please continue to pray for Beth's health, that she won't experience any side effects from this, and Ryan and I receive the inspiration we need to guide her through this as carefully as possible.

Biopsy Update

Beth, all ready to go before we left for the hospital this morning!

Thank you all for your prayers! Beth did very well today! Ryan went with her as they prepped her, and I held her as they put her under and was there as she was waking up. She ate a couple of orange popsicles and felt better after a couple of hours, but overall I think she came out of the anesthesia very well! The nurse was impressed she didn't cry at all when he was taking off all the things attached to her, lol.

Her doctor said it went well, and that he thought things looked pretty healthy to him. He wouldn't elaborate anymore because we have to wait for the biopsy results to get the most accurate answer. We'll know toward the end of next week. He said that today was just about confirming celiac disease, and we'll figure out the next step next week.

I can't tell you how much it means to us- especially Beth- that everyone has been praying for her. Thank you from the bottom of my heart.

Just a really beautiful pic of her. :-)

Biopsy tomorrow

Beth will be having her biopsy tomorrow (Thursday) morning at 10:30 am. Please say a prayer that it goes smoothly and that her results are negative. I'm actually not sure when we'll get the results, but I will post them as soon as I know!

I recently read something the other day that I thought was kind of cool. A friend interviewed her daughter and put it up on the blog, so I thought I'd do the same occasionally. Beth is a big talker, but sometimes she can be shy so not everyone gets to hear her deep thoughts on life. For example, yesterday she told me that my maiden name is a funny name, then proceeded to list the words it rhymed with. I was laughing so hard because I've truly heard it all before.

10/11/10
How are you feeling today?

Sick

You’re feeling sick? Why?

My energy just went away. That’s why I’m so sick, because my energy went away.

I’m sorry to hear that.

I know. One day I’ll feel much better. When I eat healthy stuff I’ll not be sick anymore.

What do you want to do this afternoon?

Um, play.

Play what?

Play like, Bear with Daddy when he gets home for dinner. And play chase if he wants to play chase, or play chase Wolf.

What’s chase wolf?

When Finley’s the wolf.

Oh, you like playing with Daddy?

Yeah, ‘cause he’s…I like him and I love him so much. You know who I love?

Who?

(points to me) You. You and Daddy. And Luke. And Finley and Jackson.

That’s really nice of you!

Yeah.

What’s your favorite thing to wear?

A dress.

Which dress?

This dress. (points to her pink dress-up dress she’s wearing).

That’s a very beautiful dress.

Thank you, I know. I think Jack’s crying for you.

I know, we’ll have to finish this interview later.

Yeah, now can I have my snack?

Sure.

A Novena for Beth

There are 9 days until Beth's biopsy, please join us in praying this novena for her healing. We are praying that the biopsy for Celiac Disease is negative, and that Beth has only a minor gluten allergy instead. A novena, for anyone who is unsure, is a prayer that is said for 9 days in a row for a specific intention. In this case, our intention is for Beth's healing, but ultimately for God's will to be done in our lives. Please pray this prayer with us every day from today until next Thursday!

Healing Novena

To Christ the Great Physician
We know that there is one physician:
Both flesh and spirit
uncreated, yet born
God in man
True life in death
From both Mary and From God
Subject to suffering and then impassible
Jesus Christ our Lord!

We ask O Great Physician, for spiritual, physical, and emotional healing, especially my intention of (the healing of Bethany).
You of both flesh and spirit.

May we spend all of our days in your healing presence
You the eternal Son born for us.

Grant us the healing benefits of your Incarnation, Death, and Resurrection
You who are true God and true man.

Grant us your true life in the midst of death
You, the true life in death.

Grant us to follow your example and that of your Blessed Mother
You, from both Mary and from God.

May our suffering be for our growth; free us, we pray, from that which we cannot bear
We ask You, O God the Word who became man to suffer.

We ask you to grant us this healing if it brings us closer to you,
Jesus Christ our Lord!

The Great Pantry Purge

This week I started what will be now be known as "The Great Pantry Purge." Everything comes out, shelves get wiped down, and things only get put back on the shelf if they're confirmed gluten free. I've decided to keep some gluten things, like my wheat chex that I eat for breakfast every morning, but for the most part everything will be GF. A lot of my items will be given away, some will be trashed, and hopefully quite a bit will be put back. I have to email and call a lot of companies to find out if certain products are GF.


Here's a start. Bob's Red Mill potato and rice flours, all gluten free. And Xantham Gum, who knew it'd be so expensive?! We'll be baking our own bread now since GF bread in the store is about $5.00 a loaf. The Zojjirushi bread maker has been recommended to me as the best bread machine for GF bread (since it tends to be thicker than regular bread). It does cost a pretty penny though, however at $5.00 a loaf for bread, I think we'll pay it off pretty quickly!

I've found GF pretzels, chips, puffs, cereals, granola bars, oats, and quite a few more "snack" items at my grocery store so far. The tricky thing is regular stuff like mustard, and things that you'd think might be naturally GF but are somehow cross-contaminated in the production process.

Someone told me that a local bakery sells GF cupcakes, so I popped in one day when I was out alone to check. They sell GF products only on Wednesdays- and it happened to be Wednesday- so I picked up two chocolate buy-one-get-one-free cupcakes. YUMMY. The kids like them too!

It's nice to know we'll have options like that for a special treat every now and then, since we won't be able to pickup donuts anymore. Not that we did that often, but special treats are nice every now and then, as long as there's a sink nearby.

Celiac Update

Beth and I visited a pediatric GI doctor on Tuesday, after thinking we wouldn't have an appointment until November 4! I called our pediatrician and asked him to call the ped GI and request we be seen sooner- I got a call the next day asking us to come in that afternoon! I really liked the ped GI! He was upbeat, positive, and really wanted to know how I was taking in everything. He explained the blood test to me; Beth's numbers (I forget the units of measurement) was greater than 100, which meant to him that there was a 90-95% chance that she actually has celiac disease. But he agreed that we should perform the endoscopic biopsy and we set a date for October 21st. In the mean time, we have to continue to feed Beth gluten-filled products so that her stomach/small intestine doesn't start healing, which would give us an inaccurate biopsy result.

So for now, and the next month, life is normal. I'm feeding her most of the same things but I'm starting to slowly introduce gluten-free products so that it's not a huge change at once!

I had Luke tested on Monday, and today I got a call that his blood panel was negative for celiac disease! For now, he's fine. He could possibly develop celiac, but we're not going to worry about for now!

And now, a cute picture, because I know that's what y'all are here for!

Diagnosis: Celiac Disease

Wouldn't you know it... I spent 45 minutes typing up a post before my computer ate it. :-(

Several months ago I took Beth in to the doctor for chronic tummy aches. One nasty stool sample later, the results came back normal and we confirmed Beth didn't have any parasites or other nasty bugs living in her tummy. This was in March, and at this time she'd already been experiencing the pain (that I'm aware of) for a couple of months. We had been very busy at that time, getting our old house ready to sell and getting ready to move into this house. It was easy to blame her tummy aches and "bathroom issues" on stress! Well, the tummy aches continued and over labor day weekend, Beth experienced some horrible pain. She was keeled over nearly the entire weekend with what I thought was very bad gas pains. That was enough, I called the pediatrician on Tuesday to make an appointment for Wednesday.

The pediatrician suggested her stomach produced too much acid and gave her a prescription for Prevacid. My hunch was that she had a lactose allergy so I requested they test her for that, and to do so required them to draw a vial of blood. Beth was a champ, she hardly flinched at all! She laid there for several minutes, while I tried to distract her by talking to her and the nurse about all the wildlife in our yard, but she didn't make a peep. The ped told me they would test the blood for 14 different problems, and that we'd get the results back in a few days.

Monday they called, and the lab tech told me she tested positive for celiac disease. I was stunned, this was not what I was expecting at all. I vaguely knew what celiac disease was, as my brother's roommate has it and I remember them talking about buying gluten-free beer! I asked her what I should do and she said don't let Beth eat wheat.

Of course that day was pretty busy, but I tried to get online during nap time to research celiac disease. As it turns out, it's a fairly common autoimmune disease, but it's pretty uncommon to have a diagnosis at such a young age. The good thing is that since we've caught it so early, Beth most likely won't have any lingering effects and will probably never remember her gluten-filled days.

What this means for her is that she won't be able to eat gluten-containing products for the rest of her life. There's no medication to take- it's completely handled by diet. This will be a challenge for us initially, but I hear that it becomes second nature after about a year or so. Thing that contain gluten go beyond just food products with wheat; a lot of foods are contaminated since they're processed in plants with wheat. I'm going to have to do so major label reading until I determine what products I normally buy are "safe" and figure out the correct (and more expensive) substitutes I have to buy. I'm going to have to change most of my recipes, if not completely toss out most of my cookbooks. I haven't decided yet if we're all going to go gluten-free during the initial transition, it seems like a lot of work.

We plan to have a biopsy done to confirm her diagnosis. We also plan to have Luke tested with a blood sample at his next well-baby visit in October, since it's hereditary and most likely brought out by a "trigger," and he's really too young to tell me if he's in pain or not.

We haven't gone completely gluten free yet because she has to continue her normal diet until the biopsy is done. Once we get the confirmation, she will not be able to eat anything containing gluten anymore. This means pizza parties... birthday parties...eating out...eating at a friend's house... It's all going to change. It's sad to me, but I know life is not all about food and that she won't likely even realize that anything is different. So many big events include food though, so it means I will have to be prepared ahead of time to make sure that she has a gluten-free equivalent for all occasions.

Please pray us through this initial transition, and keep Beth's health in your prayers as her body heals itself from the damage and inflammation she's experiencing now!

Here's her first gluten-free substitute, rice spaghetti noodles. She liked them a lot!