We are relatively new to the Celiac world. Since last November when we received her diagnosis, we have been learning how to deal (with the crazy curve balls this disease throws at you) and heal (our baby girl). This certainly takes a lot of time, patience, and research, so I put together a list of 10 tips we’ve picked up along our journey. If you or somebody you know was recently diagnosed with CD, these tips might come in handy.

1) Peppermint oil

peppermint oil

Despite the fact that Keira is 100% gluten and dairy free and taking supplements and a probiotic, she still gets tummy aches. They can pop up out of nowhere, and nine out of 10 times, they quickly pass without much fuss. One thing that has helped ease the pain is peppermint oil. We have bottles of this stashed in different rooms throughout our house. I carry one in my purse. She keeps a bottle of it at school. Even her grandma has a bottle she keeps at her house. We simply dab a few drops on her belly and rub it around the pain in a clockwise motion.

2) A bracelet

celiac bracelete

Keira wears this bracelet all the time. It reads:

Celiac Disease

Gluten and diary free

It gives me peace of mind to know she has an extra reminder on her wrist. Plus, she’s very much into pretty things, so this is a bonus in that department. My friend made this. Check out her FB page if you are interested.

3) Gluten Free labels

I actually need to order more or make these, but Raising Jack with Celiac sent us these!

gf labels

These have come in handy when in comes time to share food at parties, school, or meetings. The labels alert others to avoid contaminating the GF dish. In addition to labeling the food, I try to separate the GF food in potluck set ups. I also like to put it first on the line so others’ hands aren’t contaminating the GF dish by touching other gluten-filled foods first.

4) A school food stash

Keira has a stash of food she keeps at school. In a shoebox size plastic container, I packed a box of safe cookies, a few pouch fruit juice drinks, and some safe candy. Anytime there is a party or food reward, Keira will have safe options. This makes her happy, while also making it easy on her teacher and me.

5) A purse/car stash of safe snacks

Keira is involved in after school activities. She loves soccer and she dances her heart out in dance class. She’s a busy girl living with a big and busy family, so having access to food–and food  safe for her–is a must. I try to have safe and healthy (as I can get) snacks on hand. They aren’t always ideal–sometimes I have organic fruit snacks or a GF/DF granola bar–but I do keep some fruits with me too. Bananas travel very well while also helping soothe her achy legs (soccer and dancing will tire a girl’s legs out rather quickly). She likes oranges and apples as well.

6) Sunday prep-day

Having food on hand can really be helpful for anybody trying to stick to any kind of diet. It helps us to not run to the store for pre-packaged goodies. And since the drive-thru isn’t really an option for us, it’s nice having safe food on hand for those nights we might otherwise be hitting the drive-thru.  Ideally, I would prep food every Sunday, but I am the first to admit we don’t live in a perfect or ideal world! That being said, when I can get in the kitchen for any stretch of time, I like to make some meals/snacks ahead of time. This school year, I am making and freezing soups. I store the soups in mason jars, and when it’s time to use them, I set them in the fridge to thaw overnight. The next morning I heat it up and pack it in a good thermos. This keeps it nice and warm until lunch. I also like to make muffins for a quick snack or for part of breakfast. I just made some paleo bacon biscuits, and they are a hit. Cutting up fruit for snacks, or even veggies I plan to use in meals that week saves me time. I boil a dozen eggs every Sunday to have on hand for breakfast or snacks, or as part of their school lunches. Sometimes I’ll even add a cookie to the list of foods. I like to treat them every once in a while. I will share recipes in a future post (coming soon)!

7) Epsom salt baths

epsom salts

Maybe it’s the warm water. Maybe it’s the salts… I’m willing to bet it’s both. Whatever it is, the Epsom salt baths help soothe Keira’s body. Sometimes she will get flare ups that affect her stomach, but she also feels it in her joints and muscles. This happened more when she wasn’t taking magnesium, but she will occassinally get them still. To help her, I prepare a warm bath with Epsom salts. She soaks for 20 minutes, and it helps to pull the “poison” out of her body. I use also use this tool when she or any of her siblings are sick. Even if it only makes them feel better without actually “curing” anything, it’s a great way to help ease their troubles. And the best thing is that you can get Epsom salts pretty cheaply!

8) Keep medical records close by

Since Keira was much younger, I’ve had an inkling something wasn’t right with her. It occurred to me back then that I should have a record of everything related to her health. I learned quickly that I couldn’t rely on a doctor to look a the whole person–her history of complicated symptoms–so I kept my own medical records. I actually have a note on my iphone for each of my children that details their medical history. Even if something seems insignificant at the time, I still jot it down. I’ve learned that you just never know when that information could come in handy. In addition to the “notes” app on my phone, I have a huge accordion file folder where I keep a file for each kid. There are test results, doctor notes, my notes, growth charts, vaccination records, and maybe even Jimmy Hoffa’s body in there. Only kidding! When Keira was going to her first appointment to see the doctor who diagnosed her, I poured over her file. I was looking things up and making connections I’d never seen. Thankfully, all that was unnecessary because for the first time in my life, the doctor actually took care of this step in the treatment process so I didn’t have to!

9) Reconsider your dairy consumption

Undiagnosed or newly diagnosed celiac patience may be intolerant to dairy due to the damage of the small intestinal mucosa. This article explains it better than I can, but basically, the part of your intestines that helps you digest dairy is often too damaged to preform its job–thus leaving you intolerant to dairy.

10) Communication

Such a simple idea, I know. But it truly is the key to successfully leading a healthy life as a celiac patient. Some ways we communicate with others include verbally–like when we drop her off for a playdate or birthday party I always inform the parent and provide a snack (if necessary). Via text–we have found this to be helpful with communicating with teachers. They typically don’t have time to make a phone call, and I’m not always checking my email–thus, texting is a quick and effective manner to ask quick questions or to alert me of anything concerning Keira. A 504 plan is something new we used to communicate this school year. So far, it has proved to be a wonderful tool. It allows our daughter to be safe at school. Cafeteria staff, office staff, the guidance counselor, librarian, art teacher and, of course, her homeroom teacher are all informed of her condition and the necessary precautions that need to be taken to keep her safe. I will write a future post about this in more detail. We also communicate with her doctor. Anytime she gets a random/odd symptom that persists and makes me a bit uneasy, I call her doctor. So far, this has only happened a couple of times, but it is important to stay on top of this. And last, but certainly not least, we communicate with our daughter. We teach her to be aware of her body. She notices changes and alerts us. We’ve learned that we can’t make too big of a deal, but that we should also not brush off her symptoms. In the past, I’ve been known to brush off aches and pains that my children complain about. You kind of become a cynic when you have six kids who seem to be constantly complaining about anything from a healed boo-boo, to a hangnail, to a tummy ache. “You’ll be fine” has been uttered from my mouth more times than I care to admit! I try to keep that in check now because I’ve learned that, while most complaints are not necessarily serious, they can help to paint a clear picture later on down the road.

This list is something I hope can help you or somebody you know. I realize each person with CD has different symptoms, but I think this list is pretty generalized. What tips have you utilized?


Part V: How We Finally Received Her Diagnosis (July 2013-Present)

By now it was summer 2013 and Keira was home with me again. The first thing I did was take her off gluten again. This poor child—how she remembered whether she was on or off gluten is beyond me—but she was off again, for sure. I was really starting to heavily research functional medicine. If this is something you aren’t familiar with, take a break in your reading to google it. If you don’t want to do that, just know that it is an approach to medicine that looks at the cause of the disease or symptoms and not just jumping into simply treating symptoms. To put this into every day terms, functional medicine typically starts by looking at the health of the gut since this is where 80 or so percent of your immune system lies. And the health of the gut of most Americans is pretty awful. We come into contact with inflammatory substances every day—antibiotics, gluten, dairy, ingredients in vaccines, environmental toxins… the list goes on and on. These agents all have the ability to destroy the gut and the delicate balance of good and bad bacteria. And most diseases are being traced back, at least partly, to a leaky gut.

I spent a lot of my time on the functional medicine website because I wanted to know more! I researched and read day and night. I would finish a book in an afternoon—determination is my only explanation for how I accomplished this with six kids home all summer. I would check the website frequently, looking for a functional medicine MD. They come in all shapes, sizes, and specialties. I wanted a GI, and internist, a pediatrician, or maybe even a family doctor. I searched for months and didn’t find what I was looking for. Meanwhile, Keira started first grade and things were looking up. She was off gluten 100% of the time now, and her teacher knew that. We accommodated her needs at snack time. She also had her own cookies and drinks for when there was a birthday party, but all this did not seem to be enough. Again, as her birthday rolled around, she was miserable. I lost count of how many days of school she missed in October and November, but it’s on her report card like a permanent reminder of just how sick my baby was.

Finally, a few days into November I was at a local mom’s group I belong to. At prayer request time, I nearly lost it and started tearing up when I spoke of Keira. To say out loud how sick she was and how worried I was, was a real test of strength for me. I couldn’t get through the request without eventually sobbing about my baby’s health. The women, who hardly knew me since I was new, tried to comfort me and told me they would pray. Something else I hate to admit—while I was so appreciative, I’d been conditioned over the years to not expect much in the way of medical miracles. So I left feeling grateful that these women allowed me time to share what was in my heart, offered their prayers, and let me feel normal as I walked away from the table. I went to pick up my kiddos from the nursery, and I went home emotionally drained. I cried part of the way home just because I felt there was nothing else I could do.

The next day is one I will never forget.  I was once again searching the functional medicine website when I came across a pediatrician at KU Med. Her email was listed, as was her phone number. I clearly remember thinking, ‘What the hell do I have to lose?’ So I emailed this woman the following message:

Hi- I found your name on the IFM’s website. I am looking to help my 7yr old daughter with her myriad of complicated symptoms. I am at a loss with where to turn to seek help for her and to actually heal her instead of throwing pills at her symptoms. She has a life-long history of mysterious symptoms that often seem to come from nowhere–from a simple case of hives, to constipation, distended belly, debilitating abdominal pain and many other symptoms without a clear cause. We have taken her to several doctors and not received many answers. The latest round of doctors was a GI at Children’s Mercy. She found an increase in her eosinophils in the terminal ilium–it was non-specific.  We treated her with several drugs, including Pentasa. During the weaning process she became ill and symptoms returned. The scope/treat/wean cycle repeated again before I became fed up with not actually helping my daughter in the long term. I have removed gluten from her diet for the past three months, and this seems to help some. But in the last week, she has missed nearly every day of school due to stomach pain. I was hoping that you or somebody you know may be able to help her get her life back. Could you email me back or call me–even with a simple answer- as to whether or not you could help her? Thank you for taking the time to read my plea. I appreciate any direction you can provide.


And you know what; she emailed me back within minutes, on a Friday afternoon at four, mind you. And this is what she wrote:

I think we can help your daughter. Much of chronic illness comes from dysregulation/unhealthy gut that needs more than medicine to correct. If you would like, call my administrative assistant, _________, at xxx-xxx-xxxx to make an appointment for me to meet your daughter and you. From that we can discuss what might be the underlying problem and what we might be able to do to help. Blessings, ____ ______, MD

I tell you what—I nearly fell out of my chair reading that response not 15 minutes after I sent the original email. I actually flew off the couch and told anybody who would listen to me what had just transpired. I can hardly put into words the hope I felt. It felt real this time—not just something within sight yet unattainable. I had renewed faith in the system that had continued to let us down so many times before. And I knew some prayers were finally being answered. Once all the calls were made, an appointment was set up. Keira would be seen in about a week.

In the days leading up to the appointment, I pulled out all the medical records I had and went looking for the ones I didn’t have. I poured over all of them, looking for answers that may have fallen through the cracks over the years, and doctor and ER visits. Also during this time, I was attending the Gluten Summit, an online conference for all things gluten related, hosted by Dr. Tom O’bryan. He interviewed 29 leading experts, doctors and researchers alike, in the fields of nutrition, celiac disease, non-celiac gluten sensitivity, and even specialist MDs.  I spent hours every day for 10 days listening to the webinar all I could. I took notes and read and researched like never before. I was not sleeping much because this new information fascinated and consumed too much of me. By the time I took Keira to see this new doctor, I was a loaded gun of information about gluten and the like. I did not want to give a bad first impression, but I kind of—on accident—let her know that I was not new to the world of leaky guts, gluten intolerances, and chronic illness. She was appreciative of all the work I had put into preparing for this appointment–or at least she was kind enough to pretend.

Dr. W  took a good, hard look at Keira’s history—starting with my pregnancy with her. This was just want I had wanted and hoped for. Actually, this is what I, and my friends, had prayed for. A doctor who actually not only cared, but also knew how to get to the bottom of this mess. After all the questions and the exam, she sent us for blood work—and there was a lot! In addition to running a simple CBC and other basic blood tests, she looked for nutrient deficiencies and the celiac genes.  Just a few days later, we finally had our answer! Not only was she severely lacking in Vitamin D and C, Magnesium, Iron, and Zinc, but Keira also has celiac disease (stage II). She tested positive for both celiac genes—the HLADQ2 and HLADQ8.

She may not have it diagnosed by the mainstream means of a biopsy, but there is so much wrong with this form of diagnosing that it would take me another 13 pages to write that all out. But to make it short, the gut is quite large, and a biopsy is microscopic. The damage from celiac disease varies with each patient. In other words, the site where they took the biopsy from back in 2012 may not have had total villous atrophy yet. The damage from celiac disease can be, and often is, patchy.  If the doctor did not pick a damaged spot, then the disease will not show up. And though her panels both came back negative, those aren’t fool proof either. First, most doctors do not know how to interpret them accurately. Second, even if there is damage from celiac disease, it may not show up on the panel. There are many cases of a false negative. So if she already was experiencing the symptoms of celiac disease, had small intestine inflammation and esophageal inflammation, had several nutritional deficiencies, and tested positive for both genes—it’s a pretty sure bet she would continue to worsen and develop stage III and eventually stage IV celiac disease. Since this disease is capable of being deadly, her doctor told her to remain off gluten for the rest of her life in order to prevent the disease from worsening.

As for the most important test—going on a gluten-free diet and evaluating symptoms—that one also leads us to this specific gluten intolerance. She’s a completely different child off gluten.  Since her diagnosis nine months ago, we have been extra careful about cross-contamination. We bought some new cookware and kitchen utensils, and I got rid of all our gluten-containing foods. We made everybody aware of her condition, and thankfully, she’s already an advocate for herself.  Dr. W also put Keira on some supplements to not only help heal her, but to put the nutrients back in her body that she was not absorbing thanks to the little devil called gluten. She has actually grown some since we started healing her.  Where I notice the biggest difference is on the soccer field.

Last fall, it seemed Keira’s life was sucked right out of her. She didn’t have motivation. She was exhausted. She couldn’t get out of bed, let alone run the soccer field during a game. When she finished the latest spring season of soccer, not only did we notice a difference, but her coach and other parents noticed it, too. Keira ran with the best of them. She would play all four quarters if allowed. She was scoring goals, keeping her head in the game, and cheering on her teammates. She fought for the ball and never gave up. She would literally battle a player on the opposite team, head to head, and always win the ball. When the ball gets stuck between her and a player on the opposing team, she just kicks at it until she wins it. I see her foot and leg go, go, go, and I can’t help but realize she’s a fighter. She’s tough. She knows pain, and she’s come out the other side of it knowing she is only that much stronger for having survived years of torture and havoc wreaked on her gut and the rest of her body.

So now as I sit here at 10pm on a Tuesday night almost eight years after I first noticed something just wasn’t right with my daughter, I can finally say we have answers for sweet Keira. We fought the good fight and didn’t back down or quit trying until we knew we could safely rest with the answers we deserved.

Reflecting on those years of doubt, confusion, mysteries, crying, screaming, and no belief that things can turn out good, I feel incredibly sad. I hate that her early childhood and infancy is clouded in my memory. I am angry that I can hardly remember her baby smile. I loathe the doctors who didn’t try harder! To think they can just let us down time and time again infuriates me. To let somebody suffer for so long because so much of the medical system hardly acknowledges this disease and what it all entails is utterly ridiculous. Maybe if they made a drug for it, more doctors would know a thing or two about it because that seems to be how the system here in America works. But instead of calling everybody who turned us away saying my baby was fine when she clearly wasn’t and rubbing their faces in the facts, I will choose to educate instead. So I’m reaching out to you all.

Like most of you, I was once a mostly “normal” person, too. If I’d read something about celiac awareness, I’d have ignored it, too. Why would I take the time to read something that had nothing to do with me? What I didn’t know is that it is a major issue for some 4 million people in the U.S. alone. At least, 1 percent of Americans have celiac disease, but only a small percentage of these people know it. The numbers are not quite clear, but between 85-95% of people who have celiac disease do not know they have it. This happens for a number of reasons—like uneducated doctors, silent sufferers, the fact that this disease looks like many other things and doctors typically only treat symptoms and not the cause. But also, there is a large portion of this 1% who do not even have symptoms yet.

So here is your sign. You were meant to read this—and thank you for doing so. Pass it on if you wish. This is our story and if it can help somebody realize they may be suffering from celiac disease, or if it prompts somebody to get tested, or even if you read this and tell your mom who has 10 of the possible 300 symptoms, then I’ve done my job.

Since Keira’s story was described in detail, and I actually left out most of her symptoms, I thought I’d put all of them in a nice little box for you and put a pretty ribbon on it to send home with you as a thank you gift for sticking with me on this one. I know it was long (and I didn’t write for quite a while)!

From birth to diagnosis Keira experienced constipation, “colic,” hives, bloated “celiac belly,” diarrhea and constipation going back and forth, abnormally long and intense screaming fits where she “wasn’t there,” food intolerances, stomach pain, felt better while off gluten, bloody/mucous stools, canker sores, nausea, back pain, joint pain, low iron, low vitamin D, leg cramps, brain fog, irritability, memory loss, dandruff, mood swings, eczema, pale skin, dark circles under her eyes, chronic fatigue, dizziness, slowly falling off the growth charts, GERD, hair loss, heart burn, low blood sugar, and hemorrhoids. She was also sometimes the only person in our big family of 8 to catch a cold, or every stomach bug that crossed her path. Or if others caught something, she would always have it first, the longest, and the worst.

In this story, I left out several doctor visits and a couple other ER visits where we thought she had appendicitis.  My only advice is to keep up the good fight if you know that something isn’t right. Look at her symptoms I listed. They aren’t normal, and anybody who tells you they are is just as clueless as can be. Nobody should try to function with these symptoms and be told they are normal. Ask questions, search for answers, and continue to educate yourself and those around you. Who cares if you are annoying—be annoying and healthier, or less annoying and be in pain, or maybe even die before you should.  The choice is yours to make, but I will tell you right now that I do not regret one thing about our journey except the fact that I was incredibly uneducated about the issue. And if only I’d started my research sooner, then maybe my daughter would’ve had more of her childhood not spent in bed feeling like death. Learn from us and our story so that you can help make a positive impact on somebody else’s life.

Part IV: The Carousel of Crazy (January 2012-June 2013)


By the start of 2012 I was ready to put the past where it belongs and move on with life. We started enjoying all of our normal foods again. I went back to cooking one meal for all of us. Kaelyn, our third daughter, was still in the heyday of her fits, but at least we didn’t have to focus on every minute detail of our diets. We had a little bit of our lives back and we weren’t going to waste it on researching anything else medically related. I even started a new job in addition to my teaching online job, and I found out I was expecting. Our sixth baby was a surprise, but a nice surprise after those heavier months. A new life has a way of inspiring you to look on the bright side! 

That summer came, and I was happy to have all my kids home for the next few months. Just as my belly was starting to really show, Keira was starting to really complain of her tummy hurting again. This was her last summer before she started kindergarten, and I wanted her to get answers before she started school. I put her belly aches off for a few weeks, but it didn’t last long. Those tummy aches became more pronounced. She was in pain—a lot of pain. Every day she would tell me how awful she felt. Finally, I pulled out the one thing I knew in my gut would probably help her. We took her off gluten again.

The last part of summer I spent trying to get her tested for celiac disease. At her back to school checkup in August of 2012, I asked for a celiac panel. I only knew this existed because Makenzie had had one when she was hospitalized. What I didn’t know is that she had to be on gluten for a very long time, and a moderate amount of it at that, in order to get a true reading. So even though she officially started school gluten-free, here we were putting her back on gluten. And I mean, we basically stuffed it down her throat. We were constantly gluten-ing her up. Here’s some bread. Oh, look, you’re favorite—mac ‘n cheese. Here, let me help you sprinkle those extra breadcrumbs onto your chicken nuggets. We were starting to enjoy MISSION: STUFF THE KID WITH GLUTEN!

We did this for a couple weeks and then got her tested. That dang test came back negative. Again, I was just so sure it would tell us she had celiac disease. Once the testing was complete and we thought we had our answer, I gave birth to our son, Keian. It was a difficult birth, the toughest to date—by far, and to say I was struggling afterwards isn’t quite painting the whole picture. But as my health was taking a downward spiral, I saw that Keira’s was, too. By her sixth birthday in October 2012, she was the sickest I’d seen her. These details may seem gruesome, but I’m trying to spread awareness. And I figure if you’ve made it this far into the story, you are worthy of these details.

The poor girl was passing loose, watery stools with bloody mucous. When I saw this with my own two eyes, I was immediately alarmed. There’s a history of stomach and other cancers on both sides of her family, so we took her straight to the GP. She was not sure of the cause, so she referred us once again to our favorite (please note the sarcasm) children’s hospital. I prayed and prayed we would not endure the same quality of treatment we last received there, and I think we did end up with a better doctor.

This time, we got into the GI in a matter of days. Apparently they don’t like to deal with screaming babies until they’ve let them go for so long that they are now school-aged children passing bloody, mucous-laden stools. The new GI we saw seemed pretty intelligent and seemed to want to figure this little mystery of a kid out. She looked Keira over from head to toe, asked us several questions, took her whole history and decided to do blood work. She wanted to check for celiac disease, but we told her she’d been off and on gluten for the last few months and one test had already come back negative. Well, she decided to test anyway. If the celiac panel came back positive or if she was anemic, Keira was guaranteed some scopes. Well, if I know anything about my daughter’s medical issues, I do know she consistently tests anemic. And she did this time, as well—though her panel came back negative—go figure!

So within a couple days, our three week old son accompanied my husband, Keira, and me to her endoscopy and colonoscopy appointment. I was terrified thinking about what they would find. When they took her back, we got to accompany her. We were allowed to sit with her until she fell asleep. I’ll never forget how she suddenly passed out shortly after the drugs were injected. It was so sudden and that made it a bit scary—but at least we were warned this would happen. I cradled my baby boy and we all walked into the waiting room. Ellen was on the television, and I remember it was a funny episode where some lady (who worked for Ellen) would walk up to strangers and sing lyrics to them as if they were trying to have a conversation. I watched this to distract my thoughts. I also watched Keian as he let out his first real smile. It was absolutely precious. The timing was perfect and something I will never forget.

Sometime later, the doctor called us into a private room. She talked about what she found and there were absolutely no growths. I was instantly relieved and kind of let everything else go in one ear and out the other. She said she would call with biopsy results within a matter of days. I got this phone call in the kids’ school parking lot after the Halloween parties at school. I recall lots of kids talking loudly and my mom handing me her checkbook to take notes on the back. As I was listening to the nurse explain everything they found, I was baffled again. She did say that there were three prescriptions waiting at the pharmacy for us to go pick up. One was an anti-inflammatory because her small intestines were inflamed—non-specific inflammation, to be exact (yay, I love mysteries). She had an acid reducer because she had inflammation in her esophagus and obvious damage from years of GERD. And she was once again, put on Mirilax to ease the constipation.

So we started in immediately with getting her good and drugged. Pentasa was taken three times a day, Mirilax once a day, and her GERD pills twice a day. This lasted from November to January, at which point we were instructed to meet with the GI again to check in on Keira’s progress. I remember this day, January 17, because it was Keian’s four month birthday. I was trying to mentally prepare for this appointment by thinking about how Keira had been feeling, and honestly, she seemed much better—well, all except for this lump that developed under her left breast in December, but I’ll discuss that later. But overall, her digestive symptoms were improving. Complaints about tummy aches had drastically dropped—a big plus in my book! By the time we got back to see the doctor, I felt prepared to answer her questions.

Matt and I both reported how much better we thought she was. Even Keira added her two cents about her symptoms all but disappearing. We did tell the doctor that we had her on some gluten at home this whole time, but she did eat gluten-free when she was at school or with anybody else. I did this because I wanted to know when and how much she consumed so I could check for reactions. Nobody had instructed us on what to do about the gluten, so we winged it. She was getting gluten in small doses a few times each week. Then, the doctor remarked and noted (as I’ve now read in the report), that she looked extremely pale and had dark circles under her eyes on this day. She asked Matt and me if we agreed, and we both looked at each other and shrugged. She always looked that pale to us, and this was written in the doctor’s notes as well. Since she seemed to be doing better and we had no additional complaints, we were told to start the weaning process. Since Pentasa was the heaviest, for lack of a better term, drug she was on, we started by removing one pill per day. Every two weeks we were to cut another pill/dose until she was drug free. I liked that idea and so we started at the end of January because this was her three month mark of being on the drugs. She also told us to have her eat gluten as normal—including at school—so we would know if it was the drugs or the gluten-free-ish diet that was making her better. So we obliged.

After seeing the GI that day, we went straight to see an endocrinologist with this same hospital. Prior to this appointment, Keira had a bone age X-ray done as well as some blood work. These results were forwarded to the endocrinologist. When we finally saw the doctor, she told us that the blood work looked good as did her bone age. She questioned some lifestyle topics (like eating food that comes from BPA lined cans—which we didn’t eat) and discovered we may be contaminating her endocrine system by using lavender shampoo. We told her we would stop using it, and she told us that if the lump didn’t go away we should come back in six months. Ah, thank goodness for the ol’ standby known as the “wait and see” approach. It’s a mother’s favorite! Luckily, that mystery of a lump went away at the start of spring.

We left the endocrinologist that day and went home to mark our calendars for the day we’d begin the weaning process. Everything seemed fine at first. We started off in February full steam ahead. I finally felt we had some answers, we’d started fixing them, and now it was time to go back to normal. Heck, she was even eating gluten again—life was peachy. That is until Valentine’s Day 2013. Just two weeks into the weaning process and my baby girl was home sick with a fever. It wasn’t very high, but I kept her home and she rested on our couch. A few hours later, I checked her temp and it had gone to not quite 100 degrees to over 103 degrees. I got her a cold cloth and loved on her. Shortly thereafter, I was in the kitchen and I suddenly heard a scream of pain come from my girl. I ran to her side and she was in the fetal position, grabbing her belly in obvious pain. I immediately tried to get her to go potty, but she could hardly even stand. After a feeble attempt, I told Matt we were headed to the ER. I was thinking her appendix was about to or already did burst. I know nearly nothing about this condition except the location and severity of the pain, so going off of that I took her in. By the time we reached the ER 20 minutes later, the pain had gone from a 9 to a 2. I was at a loss again, but seeing as how she had the fever and the sudden onset of pain, I took her in anyway. They drew blood but we decided not to do a CT Scan because it did not seem necessary. They checked for several viruses and the like, but everything came back mostly normal. The doctor did note that she had dropped a whole point in her hemoglobin in the six weeks since she’d had her blood drawn for the endocrinologist. This concerned the doctor enough to tell us to follow up with our GP, but not enough to do anything besides wish us well on our way.

I took her home from the ER that night more frustrated than ever. The puzzle pieces were finally starting to make some sense, but I think I was too angry to try to work them out in that moment. But it did sit in the back of my mind for the next six weeks as we continued to wean our daughter off her anti-inflammatory meds. We were down to one Pentasa a day, and the tummy aches were back again in full force. I did as the doctor said and called to report the change. She told us to immediately go back to the full dose of Pentasa, stay on all the drugs, and come back for a scope. So we did, and two weeks later we were right back where we’d been six months ago—getting scoped at the GI clinic.

I wonder if you’re thinking like I was at this point—surely they found something this time. There will be an answer after six and half years of dealing with these symptoms. Right? Wrong! They called a few days after the scopes to let us know that everything was fine and we needed to start the weaning process again. “Call us back if she starts to have symptoms again!” the nurse exclaimed.

I think my response was something like “Why? So you can scope her again, find nothing, and tell us to start weaning again? How long am I supposed to run my daughter and our family on this carousel of crazy?”

And then I hung up the phone. It was a low point for me in this journey. Just when I thought, once again, that we were going to have real answers, real hope, it was all lost with a lousy call from the nurse. All the blood draws, all the time off work, all the scheduling management, all the pain my daughter was in, all the effort made to keep the drugs in her, all the blood and sweat and definitely tears were all for nothing. NOTHING! Not one single thing came of this—or so it seemed at the time. But what I failed to realize in my moments of despair watching my daughter fade before my eyes, was that this would be the turning point in getting her well. This is when we started the healing process.

To be continued…

Part III–eating paper, throwing tantrums, and seeing more doctors

Keira had always been a very picky eater, but now she was starting to eat things that were not food. Sometime in her toddler and preschool years, I forget exactly when, she started to eat paper. At this age, my kids are natural hoarders. Keira was no exception. She had plenty of junk in her bed–from stuffed animals to pillows to books. I noticed the books she stored in her bed were all chewed on. I saw that the upper right corner of these books all had bites taken out of them. It looked like a bunny ate these books for afternoon snacks. It was obvious little teeth were tearing at the pages of our favorite picture books, but we did not have any rodents in the house. Again, I wish I’d known at the time what I was dealing with. And for anybody reading this who is going through something similar, this is a sign of pica which is found in people with nutrient deficiencies. In fact, according to one PubMed study, “Underlying celiac disease should be considered in children with persistent pica and growth failure even if gastrointestinal disturbances are minimal.” And just FYI, Keira was very petite, and growing less and less each year.

At the age of 3.5, some symptoms not related to the digestive tract started to take shape as well–tantrums, to be exact. And these were not your average fits. I’d had one older and two younger toddlers and many friends with children by this point in my mothering career, and not one of them would throw fits like this. These outbursts could be over something as simple as the texture of her sock—we never knew what would set her off. And when she did “go off,” she would scream for hours. These screams were high pitched. Her eyes glossed over. At some point after her initial screams, she just screamed to scream, or so it appeared. She didn’t even look like she was of this earth when she had her fits—it was like her mind was somewhere else.

During this time in my parenting journey, I wanted to run for the hills. I did not know what to do with her anymore. Her fits not only continued, but they increased in frequency and intensity. They seemed to lurk around every corner. I hesitated to say anything to her, afraid it would cause an episode. I wanted so badly to be close to her and find a solution to whatever was causing her to act this way, but I let fear get the best of me. While I wanted to help her, I will confide that these fits put a huge {temporary} wedge between us. I’m not proud of this, and I really did not know how to help this fact, but that’s what it was—a fact.

As parents, Matt and I were just trying to raise four girls all four an under, and these fits proved to be quite challenging. We had three other kids who needed our attention, and we were not prepared for everything that awaited us. Despite the chaos happening under our roof, I did have a friend who was going through something a little similar to what we were going through. When we talked about our children, she mentioned she had found an allergist who was starting to help her son. I was excited for her, and I thought maybe that was the route we should take. So I looked up allergists in town thinking I might find help.

I ended up getting her an appointment with a random allergist in town in the Spring of 2010. I thought maybe Keira was allergic to milk. She did have those hives as a baby. Could she just not know how to express her pain or thoughts and so she screamed? I just knew I’d leave that doctor’s office with answers. So we went to the appointment, and I was less than impressed. The doctor was a joke. Basically, since she wasn’t seizing or dying before my eyes, she was fine. His arrogance was enough to knock me out of his office never to return. And I felt let down again. Worse yet, I felt I had let my daughter down again.

These awful fits of screaming lasted well into the summer when she was three. I remember a vacation we took to Colorado. We tried to make happy memories, and we did make some. But I will never forget being awakened by our screaming child at 2 am. We were in a condo with thin walls in a little ski town. We were dumbfounded as to what we should do with Keira as she belted out in her highest pitch to date. To prevent waking our other children and guests of the complex, my husband lifted her into his arms and took her to the car to let her scream it out. Oddly enough, this wasn’t the first time we had to do this. I actually had to do the same thing when we were staying in a hotel in Illinois when she was about 16 months old. I remember being clueless then, too. All I could do at midnight in my car in a hotel parking lot was wait for her screams to end. I recall my mom, who was staying with us at that hotel, saying she could hear Keira screaming in the parking lot—my mom was in our hotel room. Fast-forward two years later and here we are again.

After Keira’s fourth birthday that fall, her father and I grew more perplexed. We were worn out and I remember wanting to give up. I would never actually give up on my children, but not seeing an end in sight can play evil tricks on your brain. And when a thinker like me is given the time to imagine what could happen to their child they don’t know how to help and seems to be getting worse with every birthday, they go to the deepest darkest corners of their mind. Places I don’t care to ever visit again. No hope or faith rests in these places, and sadly, I spent most of my time there. This continued for months until the summer before her fifth birthday. By now, we were finally seeing some improvements in her demeanor. She wasn’t screaming as often or as intensely. She was easier to get along with. Our family life seemed to be happier, but we hadn’t reached the end of the tunnel yet. The fits still happened, and a new symptom started. She was complaining of tummy aches, constantly. That’s when I remembered my friend who sought help from an allergist. I was nervous I’d be laughed out of his office like I was at the previous allergist’s office, but I decided to call him and see what he had to offer.

A year after learning about him, we finally went to this allergist my friend recommended–who is actually a PhD and an MD. I found out he is a biomedical doctor—I didn’t even know what that was. I just knew he was going to help my kid. We sat through blood draws, skin pricks, and many painful screams. It wasn’t a pleasant visit, but I was willing to do whatever it took to help my baby. From these tests I learned what and IgE (a “true” allergy, think anaphylactic shock) is, and also what an IgG is. Living in the Midwest, I certainly knew what “true” allergies were, but I’d never heard of an IgG reaction. These are the more delayed immune responses—and they cause multiple symptoms. Well, Keira had IgE and IgG reactions. We were instructed to start allergy shots and remain off several different foods in order to heal her gut. “Heal her gut?” Yep, I was wondering what in the world I was uttering—I didn’t know anything about leaky or permeable gut at the time.

That fall in 2011 we stuck with our very strict diets. I had two other children who also saw this doctor, and their tests all came back with different allergies and sensitivities. This meant that I was cooking one meal for my husband, Kenli and me; one meal for Keira; one for our third daughter, Kaelyn; another one for our fourth daughter, Makenzie; and on top of that I was making baby food purees for our fifth daughter, Karys. This was financially, physically, and emotionally taxing. I was constantly focused on what to feed our kids and when their next allergy shot was due—because God forbid we went past the window of time and had to start over. But guess what, that actually happened.

In December 2011, I called and called the doctor’s office to order new vials of the serum for their allergy shots, but I never received even a phone call back, and we missed our window. About the same time, my kids were visiting my mom without me there, and she accidentally gave them a cookie that had one of their IgE reaction foods in it. I rushed over there expecting the worst—Epi-pen in hand. When I got there, everything was calm and cool. Nobody was freaking out. Everyone was breathing normally. I didn’t even see hives. And that’s when I said screw it! I was done, DONE, with this “fix.” I felt that the system failed us once again. I was done paying for it with my sleep, sanity, and money.

When Life Hands You a Mystery

I planned on adding Part II of Keira’s story tonight, but instead I think I’ll just vent about the not so fun parts of healing.

I’m kind of not a fan {at all} of mysteries when health is concerned–especially when it comes to the health of one of my children. And Keira has always been one giant health puzzle. It seems for all her life we never knew what was going on with her little body. Weird symptoms would come on, we would try to “fix” them, and then we would try again. We would see many doctors, stay up all night cuddling the pain away, and many nights I just prayed and wished on stars for a resolution to her health issues. There were pills we tried that never truly worked. We saw specialists who couldn’t figure her out. We actively tried to figure out the mystery! As you know, we eventually did. But here’s the funny thing, Celiac Disease isn’t understood much beyond the classic presentation and the knowledge that gluten is the trigger. So really, we closed one chapter of mysteries just to open another.

Somedays Keira still gets tummy aches. Though they pale in comparison to what they were last fall {and all the years before that}, they still creep up. And it’s usually about the time I start getting cocky about how well she’s doing. I seem to be mid giving-the-finger to gluten when one of these tummy aches will happen.

Super Bowl night 2014 was one of those times. We were having a good day. I’d made a decent amount of food to snack on while we pretended to watch commercials. Keira really liked the bacon wrapped figs I’d prepared. She also loved the Asian rice salad, and seemed to be gobbling it down just fine.

The night before, she had complained about belly pain around the center of her belly. It’s as if we could have traced a circle with about a one inch radius around her belly button, and that’s where all the pain was. It grew in intensity, and we sat through it with her. We tried rubbing peppermint oil on her, using a heating pad, rubbing it in a clockwise motion, and trying to distract her with sweet words and stories. Nothing was helping for quite some time, and then suddenly it subsided. As quickly as it reared it’s ugly head, it also left. We wrote it off as some minor hiccup in the healing process. But 24 hours later, my baby was in screaming and crying out in the fetal position.

Here is a time when, as the parent of a celiac child, you feel completely helpless. I felt like there was nothing I could do to take this pain away from her. Before we had the diagnosis, I could at least rush her to the ER in hopes of getting answers. Doing this made me feel like there was a chance she could be helped and the pain would be magically drawn out of her body. But knowing she has celiac disease, I knew there wasn’t much of anything an ER doctor could do for her. Short of pumping her full of pain killers, I didn’t know how thy could help her. Yet I had this urge to take her and seek help. And actually, that’s what we ended up doing.

Being familiar with her pain patterns, Matt and I knew this seemed extreme for Keira. She was rating the pain at a 9. She usually tops out at a 7. Also, all the research I’d done for months and months was replaying in my mind. I kept thinking about appendicitis. It could easily make sense since so much of her body was inflamed and so many of her organs had an itis attached to their name.

Her pain had migrated from her belly button to her lower right quad over a 24 hour time period. This was classic appendicitis. She could not even sit up, let alone stand up. With all of this weighing on my mind, I told Matt I thought we needed to take her to the ER. I don’t know how much of me thought it truly was appendicitis and how much was me just seeking somebody, anybody, to help my baby–but we did decide to go.

Matt carried her to the car, and we both went with her to the hospital. I knew that we might not get any real answers, but I was hoping to at least rule appendicitis in or out. On the ride there I remember thinking about an article I’d read that talked about undiagnosed celiac patients receiving unnecessary appendectomies. I was worried that Keira was a diagnosed celiac patient suffering from celiac pain that mimicked appendicitis. Not that I wanted her to have inflammation or surgery, but a small part of me did want answers. I’m tired of not having answers.

When we got to the ER, I made sure the doctors understood she had celiac disease. I told them I thought the pain she was in now was very different from her previous tummy aches. For one, she couldn’t move without crying out in pain. It was also her highest rating on the pain scale ever. And it’s location and migration looked just like appendicitis. But deep down I felt it was her celiac inflammation acting up. I felt this way because just one year earlier we were at the ER for the exact same reason, but we were weaning her off Pentasa at the time.

An ultrasound and CT Scan proved my gut feeling to be correct. I was glad to hear that she didn’t have to have those complications on top of what she was already dealing with, but I also felt defeated. I felt out-smarted by the gluten devil. I felt like I let my baby down. I think it’s part of the mom DNA to always place blame on yourself and question everything you’ve done that could’ve led to the very moment you couldn’t protect your child the way you wanted to.

After a very long night, we went home. With us, we brought a very tired girl who seemed to be in less pain. Keira feeling better is always a good thing, but why she was ever in pain in the first place remains a mystery.

I don’t know if it’s who I am or if most people are like this, but I do not like being clueless when dealing with illnesses and diseases. I always want to know why–no matter what the truth is, I always question it. I’m a very trusting person with other people, and I usually don’t think twice about somebody’s intentions. But when it comes to everything else {be it health, education, politics, etc}, I question. I probably over analyze and ramble on in my head, but I am just wanting answers. I want to figure things out. So when I can’t figure out why my innocent little girl is holding her stomach, curled into herself like a baby, all while moaning in pain, I GET MAD! I don’t like this fact, but this is a vent post and so I am venting.

I think there is a lesson for me to learn while we go through life on this journey. I need to not be mad. I need to not let anger and frustration distract me from being there for my daughter. When she needs me, I want to give her my 100%. Well, actually I always want to give her and her siblings my 100%, but I’m sure you know what I mean.

As Keira has lived her life, she has truly inspired me. She has to be the toughest person I know. She rarely complains about anything because she knows true pain. If I were her, I question whether or not I could dig myself out of a pity party. Where she persists and takes everyday as it comes, I’d probably wallow and look for blame to place on something or somebody for my situation. And that is what is so beautiful about her spirit, she just keeps going. I’ve seen this scenario play out many times in her life. She never seems defeated and she always rises out of whatever crappy ashes life hands her. This girl might have my eyes and passion for art, but she most certainly has a better attitude than I would have. She keeps me in awe and feeling truly blessed to be her mom. I have no idea how I got so lucky.

The Start of our Journey

Recently, I sat down with my computer and thoughts when Matt was out of town and the kids were all in bed. Nary a creature was stirring, but my ideas were bouncing around and coming together without my trying to make it happen. I had been bottling up all of my emotions, thoughts, and ramblings about Keira’s health for quite some time. You could say I’d been keeping it all to myself {mostly} for the past six months, but in reality I’ve been frustrated and holding back for over seven years. 

So, a few days ago I sat down to let it all out. It took me a matter of a few hours, but 13 pages all about Keira’s health poured out of me. I felt drained of all creative energy afterwards. Though that can be damaging to my career, it felt nice for a change. I felt like I had confessed to a crime and the weight of knowledge I didn’t want was finally lifted from my shoulders. There was freedom in the act of writing. Ridding my brain of these ideas was long overdo.  This sounds a little dramatic, but that’s how us passionate people are. And if you can’t put up with that, then this certainly isn’t a place you will want to spend much time. Just FYI…

So, I thought for my first official post, I’d tell the first part of her story:


“I think up until a year or two ago, I had never heard the word ‘celiac.’ I didn’t know what gluten was until a year or so before that. And what I knew about it could be summed up in a sentence—something like, “ummm… I think it’s bad for you.”

I didn’t know about these things, because according to me, I didn’t need to. My kids were fine. I was fine. My other family and friends were all fine. I didn’t need to be up until 2 am several nights in a row for months on end looking up ridiculous amounts of information on mysterious symptoms. If we had a complaint, we went to the doctor. They know everything there is to know about illnesses and diseases, so why should I worry about it? This was my line of thinking for a short while before I started to think and reflect on what was happening before my very eyes.

Blame it on the fact that we had several babies back to back and with that came enough sleep loss to consider ourselves delirious and weary for a decade, but I did very little reflecting the first few years of motherhood. I was blissfully unaware of anything that did not meet the day-to-day needs {not wants} for my rapidly growing family. I was too busy. I spent my days changing diapers, holding crying babies, being miserable and pregnant, sneaking bites of chicken nuggets and mac ‘n cheese, chasing toddlers away from toilet water and the middle of streets, teaching at night, writing a book, nursing or pumping, and trying to manage my new mom life. There was hardly a moment to even consider doing anything besides surviving. I do admit that every once in a while–usually while nursing or pumping and exhausting all of the channels on cable  television–I would take pause and think about life. These moments were few and far between, but they did happen. Keira’s health popped its little head into this window of time every now and then. As it did, little bits and pieces of her health journey started to come together like a puzzle. But instead of starting with one piece and finding the next one that fit it, we started with a random piece. And it did not come together smoothly after that, either. It was like we would find one of the corner pieces, and then another random piece not knowing where it belonged. I knew I had puzzle pieces, but I did not even realize they all belonged to the same puzzle. None of them seemed connected at first, but I eventually learned they were all part of the same big puzzle. I started to rethink everything I knew. It made me start to question what I’d always held to be true.

Sometime in the last 7.5 years, let’s just say about 4.5 years ago, I really started to realize something was different about my daughter, Keira.


She is our second daughter—just 13 months younger than her big sister. She came into my arms on a fall night in 2006, a screaming, pink, plump, dark-haired beauty. I fell in love instantly. We had a bond like we knew each other in ways that no other person could know. The day after she was born, I remember photographing her like I was getting paid per picture. Her daddy left the hospital that afternoon to go home and take a shower, so naturally, I dressed her up in several outfits and made sure to capture each one on camera. We snuggled. We slept. We even got yelled at by a nurse for sleeping together in one of those “unsafe,” gated hospital beds. That’s neither here nor there… , but I was simply smitten with my new bundle, and we were released as scheduled, to go home.


It is incredibly difficult to remember much of Keira’s first months at home. I really hate to admit this, but I can’t remember so much because she completely blindsided me, and I was consumed with all things that come with having a new baby. I had no idea just how different two babies, from the exact same parents, born just a year apart, could be. Where Kenli, our oldest, was mostly quiet, happy, slept through the night from the get-go, ate like a champ, did everything according to the books, and just loved her little world—Keira was almost completely the opposite. To say there was a stark contrast between Kenli and Keira’s infancy would certainly be an understatement.

I remember one of the first signs that something with little Keira’s body was different. My husband was out of town, and my mom was visiting us. We remarked at how bloated her belly was. It was rock solid. The poor girl hadn’t had a bowel movement in days. I remembered in my childbirth class just a year and a few months prior, the nurse commented how different babies have different bathroom schedules. Well, Keira’s was certainly different from Kenli’s, but she was so young I really hadn’t noticed a pattern for her movements yet. I didn’t know if a week without pooping was okay, but in my gut I did know. I could see the signs in front of me—a grumpy and grunting baby, a bloated and hard belly, a restless infant who looked at me with the saddest eyes. After putting a call in to the doctor, we were prescribed a suppository for her. It seemed to help, and naturally I was happy it worked, but the next few months proved to be tougher than I ever could have imagined.”

I’ll end there for now, but I’ll be back tomorrow to share more of Keira’s journey.


ImageAs I’m sure many of you reading this already know, my sweet girl, Keira, was diagnosed with celiac disease about six months ago. And what does a writer do when given this little slice of lemon? Well, she writes about it. This is my therapy. As an educator, I also wanted a place where I could share information with the masses–and I think I’m using that term lightly since maybe my mom and a couple of friends are probably the only ones reading this. But I don’t care. I just want a place where I can vent about our bad days, celebrate our successes, update on doctor visits, and basically keep track of Keira’s journey. And if our story enlightens anybody along the way–all the better!

During the past six months, I have spent many hours reading articles and listening to webinars about celiac disease and the devil that is gluten. I have learned so much because I wanted to. I am not a doctor, and you should not take everything I say to heart. I’m just a mom, and sometimes I write really late at night or very early in the morning–I also haven’t hired editors to go over my writing with a fine tooth comb. So, take what I write and if it resonates with you, do something about it. Ask your doctor, look it up, talk to friends, and reflect on your own life. Search for your own answers while letting my little piece of blog-land serve as a springboard to your journey.

My other goal in creating a blog was to save you guys the time and energy (and coffee) it took me to learn about this disease by compiling a bunch of information right here. It is my hope that while sharing Keira’s story, our struggles, our gains, and our questions, you will find something you are looking for. Whether we can help you answer a question, or just entertain you, I am glad you are here.