A week later on June 30th, the pediatrician's nurse called to inform us that Calvin and JJ both tested negative for Celiac Disease. (A big relief for this momma who won't have to wean JJ off his diet of only PB and bread sandwiches). A week after that, the nurse from our family practice clinic called to inform me that the rest of us (Cooper, Jake, Jared and myself) were all negative for the disease as well. It was a surprise that Jared and I didn't have it. I guess that means one of us must just be a carrier and may never end up with it. When I called and spoke with Dr. Easley's nurse to relay the test results, she reminded me that Celiac disease can pop up at anytime. So while we may have all tested negative for the proteins now, we are to keep an eye on how we're feeling. If there's a sudden, unexplained weight loss, or fatigue or abdominal pains, etc. we should look into getting tested right away. But for now, we're all clear and the mystery continues as to where this originated...with no known history of it in either of our families' medical backgrounds.
On Thursday, September 24th, Karcyn, who had her blood drawn a few days prior, was due to meet with Dr. Easley again to see how her numbers were. Unfortunately, Dr. Easley didn't get the blood work back in time. So he had nothing to look at in that respect.
However, he was thrilled with her growth. On this day, at 9 1/2 years old, she finally broke the 50 pound marker!! She weighed in at 51.8 lbs. She was up 2.5 lbs since May 28th. She measured 4 feet and 1/2 an inch--up 3/4 of an inch since the end of May. All told, since the very first consult appointment at the end of February (7 months prior), she was up 4.5 lbs and 2.5 inches! Dr. Easley was amazed and knew we were following the gluten-free diet for her religiously. He gave her all sorts of high-fives and she even got a hug from him.
The only caution he gave us was to be careful of the GF products we eat. Gluten is the "glue" that holds food together. In the absence of gluten, sugar is used. So you want to make sure you're not taking in gobs o' sugar, which turns into fat. Hmmm, maybe that's why I didn't lose any weight going gluten-free. I don't recall eating a ton of GF products during that time anyway, but it was definitely noted!
We're still riding the train on this new lifestyle journey, but I feel like the runaway train we were on April and May has now slowed down to a doable speed where we're just clicking along. We've found a groove. I'm still having to read lots (and LOTS) of labels and keep my eye out for things that are already gluten free but are starting to be labeled that way or just more GF items that are being added to the shelves.
Thoughts about the past six months:
*I'm SUPER grateful for Primary and Activity Day leaders who are impressively vigilant and kind about purchasing food and treats that Karcyn can eat to make sure she feels included.
*I've forgotten the Chex for her Sacrament bread replacement a few times! And even when I DID remember, there were a couple months during the summer when somehow the young men passing the Sacrament couldn't seem to get it to our row. That took a little several weeks of trial and error before it got worked out. Bless the boys' hearts---passing the Sacrament reverently is hard enough without trying to remember to get a piece of cereal to a young girl sitting on the back, corner pew. Karcyn was so good to not be upset when she was accidentally forgotten, repeatedly.
*In August, I was thrilled to be at Sam's on my designated day and to discover that the Cheerios they were carrying were finally labeled GLUTEN FREE!! And they cost no more than they already did!! Happy, happy day!! We could start buying cereal in bulk again! Hallelujah!
*I still think plain gluten free pasta is gross. (Actually, pasta in general just doesn't do it for me anymore--something I NEVER.EVER. thought would come from my mouth. I was the girl who could put away seven bowls of pasta during Olive Garden's "Never-ending-pasta bowl" promo. My life revolved around pasta. It was my go-to snack and lunch or dinner or anywhere in between. If we went out to eat, I always ordered the pasta dish--with sauce on the side because it was the pasta I was after, not the sauce. A little sauce was okay--like one tablespoon. But I saw no point in eating pasta drowned in sauce. It ruins the pasta! It's kind of sad and a little weird that pasta has lost it's high-ranking place in my life. But I guess, considering the circumstances, it's just as well.)
I got brave one day, though and decided to try the gluten free pasta in one of our favorite dishes: Pasta Florentine. It was...amazing. If there was anything different, it was practically undetectable. Hooray!!! One more meal we could add to our slowly growing list of dinner ideas. That gave me the courage to try our beloved Spinach Lasagna. But the only GF lasagna noodles I could find were the no-boil kind. That was a double-risk. I'd never used those before. Well--after the first test run I can boldly declare that I am never NOT using them! What a TIME saver!! The spinach lasagna was another hit! Such a sweet, joyful gift to be able to enjoy two of our favorites with Karcyn's needed adaption and without the recipes losing their integrity. Calvin helped me make homemade, creamy mac and cheesies the other day. It, too, was delicious. So the gluten free pasta has made it's way back into our lives. Just not in the form of spaghetti or where it has the potential to be eaten plain.
I'm a little bummed that there are only a few gluten free pasta options available locally, currently. I can find rotini and penne and spaghetti and no-boil noodles at our store. But, until just recently, there were no elbow noodles and I still have yet to find egg noodles anywhere--which would allow us to add yet a few more meals into our rotation. Who knows? They may not even be manufactured.
*I have also given in at family meals and made one batch gluten-free and one regular. Like spinach lasagna (because the noodles are expensive) and waffles (because GF is gross to me!). I figure as long as Karcyn's getting her gluten-free food, the rest of us can eat whatever. Which certainly helps keep the cost of buying gluten-free foods down to a minimum.
Speaking of costs--the Gluten-free Fairy continues to visit our home. I have no idea who it is or how many people are involved, but the foods they leave anonymously for us are a ginormous blessing and relief. I have no doubt that over half of the GF food in our pantry was all given to us by the kindness of others. The food pictured below was donated to us just since the end of August. We had already been hit by the GF Fairy numerous times before that!
A lot of my friends have asked me the same question: What [flour blend] do you use to bake with? I have a very simple, two word response to this. I don't. Meaning: I don't bake. I used to. Used to love to make breads and desserts and other treats. But that's not really my thing anymore. It's hard to make the baked goods anywhere close to being as "good" as they were prior to their gluten-free make-over. Sometimes, I'll make regular treats for a potluck or book group or something special like that. Our family wasn't much of a treats family to begin with and now that we've got the gluten-free thing happening, we really aren't into baked goods. Which isn't a bad thing. Just a bit of a shift. I have to wonder what the boys will do when they leave home and are on their own. I'm curious if they'll start making and eating all the things we've recently eliminated from our family's diet or if this new lifestyle will carry over into their future lives or if it'll be a little bit of both.
Around the beginning of October, I was home alone with JJ and we were fixing lunch. Out of the blue, when I handed him his food, he asked, "it gooten-fee?" I was so surprised! This little boy, who we had never spoken directly to about this, had, through observation and listening, realized that it was important for our food to be gluten free. So he wanted to know if what I was giving him was gluten free. It was so cute and reminded me that he knows and is processing a whole lot more than he can express. For weeks after that, he kept asking if the foods we were eating were "gooten fee." Sometimes they were, sometimes they weren't. I explained that it was Karcyn who had to have only gluten free foods and it was okay for us if we didn't.
Karcyn actually fared okay through her first Halloween since getting her diagnosis. We always sort through all candy afterwards anyway. After she decided what she wanted to keep, we had to then look up each piece/brand of candy to find out which were gluten free and which were not. Ironically enough, more candy is gluten free than you'd think. Kit Kats and Nestle crunch bars are an obvious no, but there weren't too many things she couldn't have.
We're coming up on our first Thanksgiving since her diagnosis. Not sure what that's going to look like. We were invited to a big pot luck at the church like we did last year. It's very tempting on an "I'd- like-to-enjoy-the-spirit-and-spread-of-Thanksgiving-without-having-to-cook-the-entire-meal" level, but we have to consider looking at it from Karcyn's perspective too. I won't know what she can have aside from raw veggies and fruit that we didn't make ourselves. Even turkey cooked with bread stuffing inside it would be contaminated--as would gravy and possibly mashed potatoes that might have been stirred with a spoon that was in the stuffing bowl. Cross contamination can come in a myriad of ways. I'm sure I'm not 100% clean in my prep either. Sometimes I just forget we're supposed to be mindful of those types of things. And I can't question every person who contributed food with the third degree regarding how they prepared their dish, nor would they even know if their ingredients are gluten free or not. So--we have yet to determine where we'll be and what we'll be eating for Thanksgiving this year.
A week ago Monday, my mom underwent some out-patient procedures. She and my dad are trying to get their mission papers sent in again, but she was unable to get her medical papers signed. Her blood count was extremely low. She failed three blood tests. So the procedures were scheduled to do a comprehensive, top to bottom scan to locate where she was losing blood. She had a colonoscopy and an upper endoscopy done. Turns out, the doctor found four "bleeders" in her stomach, which he cauterized. She is ulcer free, however. And her colon was also clear. In fact, the doctor signed her medical papers that very day! In his findings during the scope of her small intestine and stomach, however, the doctor discovered that my mom has Celiac disease! Mystery solved. They called to tell me yesterday. Absolutely fascinating! When I told Karcyn, she wasn't sad or angry. Nope. In true Karcyn-form, she was excited! She was excited she actually had a Celiac disease buddy. She wasn't the only one anymore.
So this autoimmune disease came to Karcyn through me, not Jared as I had predicted! Which makes me a carrier. Whether or not I actually have the disease and it's simply dormant at this point, remains yet to be seen. The doctor told my mom that because she's 70 (who knows how long it's been "awakened") and hasn't experienced any negative symptoms from it, he doesn't expect her to make the huge lifestyle change. He did say it would help her absorb the mega-hundreds of mg of iron she has to take to get her blood count back up to a safe, normal range. But he wouldn't consider her a bad patient if she didn't. If she doesn't feel bad while eating gluten at this point in her life, I can't say I would avoid it either! So the Celiac disease is a Cooper/Lee thing. Jared said it's just one more thing we can blame my mom for ;)