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.

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