Dr. Theresa Krause is very cool and hip with the kids. I quietly shared with her the issues the teacher had laid out. I admitted that Karcyn doesn't have a filter and does talk loudly and is on the less mature side of other girls her age (who are, more often than not, the first child in their family), and did these things mean there was something really wrong with her? Dr. Krause began a conversation with Karcyn for a few minutes and then we had Karcyn step out of the room. Dr. Krause said she wasn't getting any immediate red flags about Karcyn's behavior as she was extremely engaging as they conversed together and seemed very bright. Could Karcyn be on the outer edges of something? Maybe, maybe not. But the doctor brought up something new. Dr. Krause's real concern was Karcyn's lack of growth. She said Karcyn is at 1% in height for her age. I told the doctor she's always been petite. Someone has to be on the short end of the chart, right? Dr. Krause said that this is the age (8 and 9 years) when doctors start to notice children who aren't growing or catching up and try to determine the underlying problems that are contributing to that. She said it could be a thyroid issue or hormones or a chromosomal abnormality such as Turner's Syndrome. She suggested we do a blood workup and get a bone growth scan to rule things out.
Shortly after that appointment, I took Karcyn in to the diagnostic center that was attached to the ER around 5pm one afternoon when it was just me and her. I was going to have the ER do her lab work as well, but the tech said the chromosomal study was thousands of dollars and if we did it now, the blood would have to sit and wait overnight (effecting the viability of the sample) because there was no other courier pick-up scheduled and we might want to get the most bang for our buck by doing the blood draw on a morning instead.
Did she say thousands??
After Karcyn got the x-ray, I spent the next two months calling the hospital, the lab, our insurance, human resources, the lab, the diagnostic center, insurance, insurance and insurance. It was a nightmare trying to get CPT codes, billing codes, and wading my way through this new insurance plan in an effort to get a definitive answer to the question: What would our out-of-pocket responsibility be after insurance "pays"? Our insurance coverage in Oregon consisted of an HSA plan and we were on the hook for a $3000 deductible and then 20% after that. We weren't used to having co-pays. I needed to be proactive because this wasn't an immediately life-threatening issue and we didn't feel it was very responsible to get lab work done without knowing if we could afford it or not.
Finally, I got an answer that made sense. And prayed it was true. If we got the labs done at a St. Joseph facility (Jared's employer), we would only pay a $15 copay. Could it really be that easy? I got the name of the gal I spoke with, documented everything and held my breath. We got Karcyn's labs done the beginning of Christmas break when I could take her in the morning without interfering with school.
A week later, Dr. Krause called. She said the bone scan showed Karcyn is a late-bloomer, that she still has room to grow, so that's good. Her thyroid was normal, the chromosomal study was normal, as well as the other panels that were done. However, she tested positive for the Celiac Disease screen. She said that it doesn't mean Karcyn has CD, just that the blood test was picking up proteins in her blood that are evident when one has CD. Only a biopsy of her small intestine could confirm it.
So arrangements were made to see a pediatric gastroenterology specialist. The closest one "in network" is in Austin, TX. But fortunately, he does come to College Station every Thursday (bless you, doctor!) for regular office visits. The first available appointment for a consult with Dr. Easley, however, was February 26th. So we had two months to wait. [During which time I got the lab work bill back. They billed over $3,000 to insurance. Insurance paid some and then we got a $600 bill. I called insurance and after a 45 minute phone conversation, sure enough, someone hadn't noticed the correct tier 1 facility code and our responsibility was indeed only $15].
Dr. Easley is amazing! He's a big silly tease. The kids clearly love him and he's very skilled in talking to parents in a way that's informative and friendly. It was very comfortable and I'd even go as far as to say--fun! He started out by pronouncing Karcyn's name in four, off-the-wall, crazy ways. She was having giggle problems. He finally settled on Kar-Kin. And she shot back and called him Dr. "Easy."
He basically told me that her numbers were SO high that he was super confident she has Celiac Disease. It is possible, but extremely rare, that a child with those kinds of numbers are giving a false positive for Celiac Disease which meant it needed to be verified through an upper endoscopic biopsy (esophagogastroduodenoscopy or EGD) of her small intestine. He drew us pictures and explained that you have small villi that line your small intestine and their job is to absorb nutrients. He showed us how they should look. He explained that when you have Celiac Disease and eat gluten, the proteins in gluten become toxic and cause damage to those small villi reducing them to little nubs. This can be painful, of course, but the damage leads to decreased absorption of essential nutrients and can lead to other subsequent diseases or conditions.
He said she would need to continue to eat gluten because if not, the biopsy would give a false negative. We needed to load her up to make sure he got an accurate picture from the tissue samples he took.
The biopsy was scheduled for Tuesday, March 31st. I just figured I would have to go to Austin with Karcyn alone and I was dreading it. But Jared saved me and took the day off for which I was very grateful. Not just to drive us, but so we could be there together for this very new experience. We were going to take JJ with us, but as the day drew nearer, we got word, that you can't bring other children with you. Blasted. So I needed someone to watch JJ. Amazingly enough, just a few days prior, I was able to secure our college friend, Maren, for the time before he went to preschool and after he got back until the older boys got home to take over. It worked out great because Maren didn't need to be at work until then anyway. Such a tender mercy!
Interestingly enough, we didn't know Karcyn's surgery time until less than 24 hours before! How were we supposed to plan around that?? Fortunately, Maren was flexible. The surgery was scheduled for 12:45 in the afternoon. She had been fasting since midnight and could have water only until 9am. We left at 8:30am to make sure we had enough time to travel, find the surgery center, turn around and backtrack if needed (it was needed) plus be there an hour before, as advised. Getting to Austin was a breeze. So much nicer than driving to Houston. We were there waaaay early, but that was also a blessing. This allowed us to speak with the nutritionist before her surgery instead of during or after, as previously scheduled.
We got a big folder of LOTS of information about what foods are safe, which ones aren't. Very overwhelming! Even though we still weren't 100% sure she had Celiac Disease, I was operating on the assumption she did. My mind was spinning. Stephanie, the nutritionist, was very nice and easy to talk to. I did learn something unexpected. The WHOLE FOODS chain was actually started in Austin, Texas! Having just come from Oregon (where this store and others abound) to central Texas where we're lucky just to have a Sam's Club, I was shocked. And I was really wishing, under the circumstances, that we were back in Oregon for the accessibility to Whole Foods, Trader Joe's and Costco. As we considered the food changes we'd have to make, Jared and I had decided that when we ate as a family (at breakfast and dinner) we would eat gluten-free meals. But at lunch time, when the kids are all in their separate classes/schools we'd allow the boys to have sandwiches or other non-GF foods. Hopefully that would work.
After speaking with Stephanie, we trudged down to the surgery center where I wrote a $920 check (on top of the $270 already paid to the anesthesiology group--with Dr. Easley's bill and the statement from the pathologist yet to come) to get the ball rolling.
Karcyn was one happy camper! If she was afraid, she sure didn't show it.
Fortunately, it didn't take long before they called her back for all the pre-op business. She thought all the machines were cool and fascinating to watch.
Out of her clean jammies and into the hospital issued ones! Karcyn was SO excited to see that her gown had LOONEY TOONS on it! The nurses were impressed she even knew who those characters were!!
After vitals were taken and she had changed, the nurse asked Karcyn what flavor she'd like for her "space mask." She started naming the choices: strawberry, birthday cake--
Karcyn piped up and said, "Birthday cake!" I suggested she might want to hear all the options first before deciding. The nurse listed off four more and Karcyn responded, "Yeah, birthday cake." Okay, so what do I know?
A nurse (there were about five different ones who came to do different things--I couldn't keep track of them all) announced that Dr. Easley would be by in a few minutes to talk to us about the procedure. Karcyn smiled and said, "You mean, Dr. Eeeeaaasy??" The nurse and another one near-by got a kick out of that and felt Dr. Easley had finally met his match :)
Here's a picture with Dad--who had just lost 30 pounds in 7 weeks (doesn't he look AMAZING?!)
Cuddling with a warm blanket and Rex.
Getting ready to go....
Karcyn waved and said, "Good-bye!! See you after the ride" as they wheeled her away!
Jared and I were then escorted to the recovery room where we were to wait for her. We munched on a couple snacks and hadn't been there 20 minutes when Dr. Easley showed up. I had a puzzled look on my face and said something along the lines of "Aren't you supposed to be somewhere?" He said they were all done. Man! That was fast. He said SHE did great. But her tummy was not happy. He showed us colored images that he had taken with the camera when he did the scope.
#1 is the esophagus. #2 is the entrance to the stomach. #3 is the stomach. #4 is another angle of the stomach and the scope. #5 is the duodenum--the entrance to the small intestine. He pointed out what the tissue in the small intestine should look like (similar to #5) and then showed what it actually looked like in numbers 6-9: red and "angry" looking, scalloped along the edges, not smooth. He said this looks like classic Celiac Disease to him. But we should know for certain by Monday, April 6th when the pathology report comes back. I hadn't considered it before, but I asked, "What if it isn't Celiac?" His response, "Then we'll cross that bridge when we get there." He left the photos with us, shook our hands, bid us a nice day and was off. Yikes! It never dawned on me it could be something worse than Celiac Disease.
Karcyn was wheeled in right after that and the nurses quickly fluttered to her side to check her vitals and make sure she was comfortable as she was coming out of her birthday cake "fog."
Once she shook out the cobwebs, Karcyn was offered a popsicle. She said she would like a purple one.
Her best "post-op" smile :)
After munching on the popsicle for a couple minutes she said, "Thank you, Mom, for bringing me." Uh, to get a biopsy? Sure thing, Sweetie. Then, she scrunched up her face as if she was trying to process some information. After a moment, she slowly said,"This popsicle kind of tastes like grape." We chuckled then explained that purple popsicles are grape!
Watching some PBS Kids. Life is good.
After her popsicle, one of the nurses took out her IV and detached her from the wires connected to the monitors. We had her sit up slowly and Jared took this opportunity to show her the pictures that Dr. Easley left with us so she could see her tummy, too.
Once the check out orders were given to us, it was time to go! It took longer to get there and wait around to get started than it did to do the whole procedure. It was also sticker time for Karcyn. Her choices were: Tinker Bell, Hello Kitty, Princess, Cinderella, Doc McStuffins. Karcyn's answer: Ultimate Spiderman. Can you tell this girl has four brothers? The nurse said, "Oh girl, I think he's good looking. I would have picked him, too!"
Karcyn did so well on her way home. We gave her saltine crackers to munch on and when we stopped to get gas, I grabbed some Salsa Mango Sun Chips to try--one of their experimental flavors. So gross! But Karcyn loved them!
Monday, April 6th, we got word that Karcyn DOES have Celiac Disease and we were to start her new gluten free diet immediately. And then...the real work began.
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Trying to come up with menu ideas for meals is chore enough on a limited budget and with seven mouths to feed. I am so grateful Karcyn's diagnosis was nothing worse and that it can be controlled with diet (for the rest of her life), but maaaan. What a headache this was going to be while we wrapped our brains around it. Furthermore, while we suspected this was what she had, we couldn't DO anything for it until we got the official word. And then it was "okay, GO!" She would need a meal a couple hours after that phone call from the doctor and then three meals the next day and the next. There's no break from it or working up to it. It's a perpetual thing that doesn't stop. Plus she's at school and involved in other activities where food is offered so we'd have to be super vigilant about that and make sure teachers and leaders were informed.
We need to avoid wheat, rye and barley--and anything else that might have traces of these grains in them! Soy is okay. But not soy sauce because it has gluten in it. Recent studies show that oats are probably okay, but not because they may be contaminated with wheat during milling and processing. So the oats must be certified gluten free.
Our love of cereal has been cut short. Clearly our restrictions are purely financial. The only GF cereal out there, in our budget is Chex. Sam's carried the big boxes of Chex at Christmas, but hasn't since. Of course. I already put in my request to bring them back permanently but I'm not holding my breath. Interestingly enough, Rice Krispies are not GF. They are made with malt, which comes from barley. Honestly, we were only eating Cheerios (Plain or Honey Nut) that we could purchase in bulk at Sam's. So now we're having to adjust to the reduced frequency of cereal since it's not a bi-weekly purchase anymore.
I still don't know my way around my local grocery store (meaning, I do not have the rows and their items memorized yet like I did in Oregon...) and now I have to read ALL the food labels--every last one of them. Even if something is labeled gluten-free, I can't assume it always will be because manufacturers change their labels AND their ingredients all the time. Consequently, I am now a full-time label reader. And the GF info is never in the same place. Sometimes it's on the front and jumps out at you, sometimes it's in super small print at the top or bottom, in a corner, after the ingredient list, or off to the side.
Yet on the flip side, there are foods that ARE gluten-free but aren't labeled that way! I just found out from a GF blogger that KIX cereal is gluten free, but nowhere does it say that on the box. Sure enough, there are no hidden sources of gluten in the ingredients. It would be so helpful if they were marked it GF so I wouldn't have to spend hours at the store like a detective, scrutinizing every little thing or worse....trying to do this with a 3-year-old. It would at least help me sift through the sea of food products.
Other foods I was surprised to discover that have gluten in them, just to name a few:
*taco seasoning
*canned white beans
*canned chili
*dried mangoes
*chewing gum
*baking powder
*nuts
*ground spices
*vinegar
*tomato soup
*cream of soups
*mustard
*ketchup
*salad dressing
*sausage
*ground meat
*canned meats
*curry powder
*lunch meats
*cheese
*spaghetti sauce
*alternative milks
A few possible non-food sources of gluten:
*envelopes
*stamps
*play dough
*glue
*soap
*shampoo
*lotion
*chapstick
*toothpaste
*make-up
*vitamins
While Jared was working on his weight loss that began the second week of February, he was eating lean and greens only at dinner. We kind of adopted that as much as we could as a family to support him. Consequently, dinners haven't been hard to maintain as gluten-free. With that said, ironically, our all time favorite family meals are the gluten filled ones. Guess we'll just have to find new favorites.
Lunches have been the bane of my existence. I'm SO grateful school was out Friday and we can spend the summer planning lunches for Karcyn to take to school that are budget-friendly and have a bit of variety that she'll enjoy. We'll just make a list and create a rotation.
Karcyn has been amazing. She has never ONCE complained about the new diet (just the rest of us have!) and she has stuck to it fiercely. Since we began the transition, she always asks me, about every meal I make or food item I offer her, "Is this gluten-free?" After a couple weeks of this question, several times a day, I was growing weary of her constant inquiry. I began responding, with a hint of exasperation, "Yes, Karcyn, this is gluten-free. Mommy would never give you something that was."
Until I did. It was a Kolache that I had gotten for the kids after we cleaned the church building last month. I actually remembered she couldn't have any and purchased some GF vanilla donuts for her to eat instead when we got home. But somewhere along the line, our plans changed. Jared was working that day, so it was just me and the kids. We needed haircuts and I think I just decided to combine two trips in one which meant we would end up eating the Kolaches in the car while we waited for stores to open at 9am. I even did the math right and picked up ten Kolaches (two for each of the boys and me) not twelve which would have included Karcyn. But when it came time to divvy up the yummy pastries, Karcyn got not one, but two! I couldn't figure out why some of us got only one. Then it dawned on me and I exclaimed, "OH NO!!! KARCYN!! That had gluten in it!!" Stupid me. I freaked her out and she started to cry, weeping and a bit fearful, exclaiming, "I'm going to be sick!" Way to go, Jenn! You are Mother of the Year. I finally calmed her down and kicked myself repeatedly for a) forgetting my daughter's gluten allergy and b) upsetting her like that. We had done SO well for three three weeks. I was furious that all our painstaking work was wiped out and we were back to square one! Karcyn continues to ask me if the foods I'm preparing are gluten-free and...well, I'm okay with that!
My second epic fail was last Sunday. Jared was working that day also. I was teaching gospel doctrine, which makes me a little uni-focused--especially without Jared to help out with the kids. As I was finishing my morning prayers, I was reminded to go get Karcyn's Chex piece for the Sacrament since she can't have the bread. Between getting up from my prayers and walking the five steps to my bedroom door, I totally forgot! Didn't remember until we were going into the chapel later that morning. Dang it! I'm sure she'll be reminding me each Sunday from now on. I hope she does, actually!
It's been seven weeks now since we began our gluten-free journey and here are some things we've discovered:
*It's a great blessing that there are a TON of gluten-free foods available on the market today, more so than ten or even five years ago. However, they are still super expensive for very little product.
*There are a plethora of great gluten-free web sites out there, too, written by people who are living the experience and have done it for years. I'm grateful for their insights, but I have to say, the recipes they post require so many obscure and expensive ingredients that in the end only combine to make something that serves two or four people--the size of their families. This just doesn't work for a family of seven--which calculates to 12-14 servings with our growing boys. Every once in a while I can find a recipe here or there that might work.
*Gluten-free pasta is not worth it. We'd rather skip the pasta altogether. If someone out there has a brand of GF pasta to recommend, we'd love to hear it!
*It's a tender mercy than Karcyn has loved rice for many years. It's her fave. Just last week, however, Jake saw the rice cooker on the counter when he came home from school and asked, "Riiiice? Again??" We don't eat it every day, but he is clearly "riced out."
*I had more gluten-free recipes in my personal repertoire than I thought and several more that could be with a small adaption.
*I have not lost one pound since going "mostly" gluten free. So not cool.
*You gotta be flexible. We had originally said no gluten for anyone at breakfast or dinner, when we eat together as a family. But as the days wore on, it was clear, just eating eggs, was tough for the kids. Calvin loves his egg sandwiches. Jake loves having "dipped eggs" (over medium) with toast. Jake eats up to half a dozen scrambled eggs at breakfast without blinking an eye and hasn't even started training for cross-country yet. He's gonna need some major calories and gluten-filled foods (like bread) are a good way to get those. Soooo, I threw in the towel and reinstated bread at breakfast for the boys. Concurrently, I purchased a ten-slice loaf of gluten free bread for Karcyn (for $7), where each slice is, at most, about 3/4 the size of a regular slice of bread for her to have for breakfast from time to time. But, not anticipating we'd need GF bread, I never bought her a new, clean toaster (where the GF bread won't get contaminated by the crumbs from the regular bread), so I quickly adapted and toasted it up in the skillet for her. It did the trick!
*Experimenting with meals stinks! Whether it's a new pancake recipe or the Upside Down Pizza I made the other night for dinner (which had over 600 4 or 5 star ratings on allrecipes.com), it's a crapshoot! And gross. Plus you have to have a back up plan and having some quick and easy GF meals to fall back on are virtually non-existent to us at this point. But when we're fortunate enough to find a recipe that tastes amazing and is loved by all, it is worth its weight in gold!!
I've had several people ask what Karcyn's symptoms were or how we discovered this. Honestly, it was because the pediatrician caught it. Looking back though, she is more gassy and crampy (which we attributed to the gas) than any other child, Cooper being the next after her. But the frequency at which those episodes occurred was so low that it never triggered any thoughts that we might have a food allergy, because her stomach pains never seemed to follow a pattern like flaring up after we ate a specific food or dish. And if she's been in frequent pain, Karcyn has literally and figuratively gutted through it like a champ because it certainly wasn't appearing to interfere with her quality of life.
Some kids, if they get "glutenized" immediately vomit, for example. Or have a definite outward manifestation of their allergy. Karcyn doesn't. So in some ways, it'll be harder for us to know if we're successfully avoiding everything with gluten. Furthermore, Dr. Easley explained at the consult appointment in February, that for some kids, the only symptom of Celiac Disease they have is being short. And once they eliminate the gluten from their diet they shoot up in height. That makes me wonder about Cooper. He is most definitely short. Always has been. And while Jared and I think he's actually grown a smidge recently, we can't help but wonder if he has Celiac Disease too.
Karcyn had her follow-up appointment with Dr. Easley on Thursday, May 28th, and we learned some more things.
He asked if we had been following a strict GF diet for her. I said yes and then Karcyn promptly threw me under the bus and brought up the Kolache incident. Dr. Easley said not to worry, those things happen from time to time, and assured me that one mishap like that does not reset you back to zero. It can cause minor damage, but it doesn't wipe out all the work you've done thus far. So that was good to know.
Secondly, in three months time (and realistically probably just since we went GF seven weeks ago), Karcyn has gained 1.5 pounds and grown 1.5 inches! She is now in the 2nd percentile. Dr. Easley was SO impressed and very encouraged by this dramatic increase in growth. He was going to do a blood screen again to check her numbers but because she's doing so well, he decided to wait until the fall. I jokingly asked him if we earned a gold star for that and he said, "You get more than a gold star, you get a platinum star!" He said we should definitely be proud of our diligence because it's making a difference. He said he has some parents who give their kids with CD one day a month where they can have all the gluten they want. And Dr. Easley's like "Noooo!!!" You just have to make the change and stick with it.
I told him I had heard that if she's got CD then that means either I have it or Jared does (I predict it's Jared and not me) and asked if that was true. He smiled and said he was just getting to that. "Yes, one of you have it and your immediate family needs to be screened for it" through the blood test. I cringed, though, at the possible financial ramifications and asked if everyone would need a biopsy as well. He said, most likely, considering the circumstances, if the lab numbers are really high, we'll just assume that person has it and that they will need to make the complete change to GF as well. He said we can discuss options for those whose lab numbers are borderline if it comes to that.
I learned that 40% of Americans have the Celiac Disease gene. So first, you have to be a carrier. But then you have to have a number of circumstances or "insults" against the gene that awaken it--which is why it can pop up in anyone at any age. Crazy. Just the past couple weeks, JJ has been complaining of stomach pain. He usually lays down and then a little while later, he's okay. At first I thought he just had the stomach bug. But he didn't. When it continued off and on over the course of a week, I figured his "stomach pain" was something else and he just didn't know how to articulate it. But he continues to say something about his tummy every other day or so. Who knows? Maybe he has it, too. This kid lives on PB and Bread alone. For the purpose of the blood test, the remaining six of us Houghs will need to make sure we're getting enough gluten in our diet every day for the next 3-4 weeks to ensure our lab results are accurate, which, believe it or not, will be trickier than it sounds as we've been working hard the past two months to eliminate as much gluten from all of our diets as possible. Now we have to switch gears again.
Dr. Easley also mentioned that while you don't need to worry about gluten getting on the skin, you do need to worry about it getting on Karcyn's fingers and then having her eat. So if there's gluten in her shampoo and she washes her hair then has a finger food afterward, that can be a problem. Working with play dough, for example, unless it's gluten-free, Dr. Easley says, she'll need to wear gloves. Yikes! Chapstick is another one to consider as well as chewing gum. More head spinning...
I also asked about vitamins and growth potential. We wondered if Karcyn would need a supplemental vitamin and Dr. Easley said if she's getting a variety of foods (fruits, vegetables, meat, etc) she's fine. But then I asked about brain development when she was a baby--should we be concerned that she didn't get adequate nutrition as an infant? He told me she didn't have Celiac Disease when she was a baby. It's a slow growing disease and she was fine as a baby.
And as far as growth potential, if Karcyn continues to be gluten free, she will absolutely catch up on the growth that she's missed thus far. If God intended her to be 5 feet, 7 inches, she will grow to be 5 feet, 7 inches. You can't make someone taller than they're supposed to be, obviously. If, however, we don't stick to the diet, we can certainly make her much shorter than she could be.
So that's where we are right now. Hopefully, we'll be even more adjusted with an additional seven weeks under our belts.
3 comments:
Soy sauce CAN be gluten free. I should call or email you about your journey! I have a wheat allergy (not celiac disease) that is mild so I CAN have gluten but I try to shop and eat gluten-free generally. While I know I cheat sometimes, it's a conscious choice usually so at least I know what's in it and don't have to wonder if I suddenly feel weird later in the day.
Wow! What a story. I can't imagine making that change for so many...You're a good mom. :-) Glad she's handling it so we'll and amazing that she's growing so much so fast!
Thanks! For sharing. I feel all your pain and worries. It's a hard journey. To check on gf foods I like gfoverflow.com. you can type in a food or brand name and it can tell you! Have you tried mission thin corn tortillas? Or thin flat rice cakes?
Although Kix are gf it doesn't mean they aren't processed on the line with gluten! Cheerios are going gf soon! There are gf rice krispies, but they are labeled as such. It's the rice crispy brand too!
There is a trick to gf pasta. It will blow your mind! I will try to find it and email it. Did I ever send you recipes? If not I am sorry. Foster patenting to young kids is tough :)
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