“Mommy, my tummy hurts.”
It had become such a common refrain from my five-year-old daughter that to my wary mom ears it sounded indistinguishable from the clearly less alarming “Mommy, I’m bored” or “Mommy, I’m hungry.” Her stomach pain would come and go, but like that unfortunate ex-boyfriend who never seemed to get the message that you were never—like, ever—getting back together, it would never be gone for long.
I could relate to her suffering on some level because I, too, have frequently been afflicted with stomach pain, compliments of irritable bowel syndrome that I apparently inherited from my mom, who also suffers regularly from abdominal distress. But even as I tried to take her frequent complaining with a grain of salt and not be “that mom” who is always convinced her child is teetering on the brink of catastrophe on a daily basis, I was still concerned about what I noticed in her from a very early age.
Her tummy troubles started about a couple of weeks after she was born. She struggled with pretty intense reflux. After it wasn’t helped by the first medication we tried, her pediatrician suggested I eliminate all dairy from my diet for a month to see if it helped her symptoms. It really didn’t seem to, so we moved on to a stronger medication that greatly reduced the number of times she projectile-vomited my “liquid gold” all over our carpet, couch, car—you name it.
We rode a wave of relative calm for about a year, until I started noticing blood in her stool on an infrequent basis—maybe once or twice a month. Obviously alarmed, I took several poopy diapers tightly sealed in Ziploc bags to her pediatrician’s office for inspection. Her pediatrician, on several occasions, sent her stool samples to a lab to confirm that the red in the stool was, in fact, blood. It always was. We also had her stool tested for a number of different bacteria and parasites, but nothing abnormal ever materialized.
Her pediatrician at the time theorized that she was possibly getting anal fissures (or tears) due to the fact that she battled with frequent constipation and her stool was rock hard by the time it finally passed. A while later after the pediatrician who offered that theory retired from her practice, I again raised my concerns with our new pediatrician. She, too, informed me that it wasn’t uncommon or necessarily alarming for children to produce blood in their stool and that it was probably directly linked to her frequent issues with constipation. She recommended I give my daughter a daily probiotic and make certain she ate plenty of fiber every day.
I complied with her instructions, but as my daughter grew older, her level of discomfort seemed to increase. My level of discomfort with the seemingly dismissive explanation of her chronic stomach pain and blood in her stool increased, too. I started to fear the worst, as we moms tend to do. What if she has stomach cancer? What if she has any kind of cancer? What if there is something horribly wrong with my child that we’re missing?
During this time, my husband was diagnosed via endoscopy with Celiac disease after he, too, battled sudden onset and intense abdominal distress for several months. Celiac disease can be hereditary, so we thought perhaps Celiac was also responsible for my daughter’s suffering. After some discussions with our pediatrician about the pros and cons of eliminating gluten from my daughter’s diet on a proactive basis, we decided we had nothing to lose and everything to gain, and we took her off gluten. It was a very difficult adjustment for everyone at first, but we made it through.
My daughter’s complaints of stomach pain did seem to decrease in frequency, but we weren’t out of the woods completely. She continued to complain of stomach pain, and when her stomach would hurt, she would writhe around and wail in such a way that would break any mama’s heart. After a few months of giving the gluten-free diet time to work its magic, I determined that we hadn’t solved the problem yet.
I decided to switch pediatricians—this marking the fourth pediatrician my daughter had seen in her five short years—and basically begged this new doctor to refer me to a pediatric gastroenterologist. He did so without hesitation but warned me that a colonoscopy was likely in my daughter’s future. I fretted over the possibility of having to walk my rather dramatic daughter through the prep work involved for a colonoscopy. I fretted about having to put my daughter under anesthesia for a colonoscopy. I fretted about the actual mechanics involved in a colonoscopy. But in the end, I resolved that all of the risks would be worth it if we could just get to the bottom of what was causing my daughter to be in so much pain.
You can imagine my relief when our pediatric gastroenterologist did not recommend a colonoscopy but instead ordered immediate blood work and sent us home with a very elaborate stool sample kit. Over the next week, the calls from her office with the lab results started to trickle in. The first call we got—the one I was most anxious about—indicated that her white blood cell count was normal. Hooray! I received several more calls suggesting that her lab work looked normal, which was great except that it was an all-too-familiar echo of our journey up until this point: “Everything looks great. We don’t know what’s wrong.”
And then we got the call. It wasn’t the doctor calling, of course, but her nurse. “Your daughter’s blood work indicates food allergies,” she said. “Are you ready to write this down? She’s allergic to eggs, dairy, and bananas. On a scale of one to ten, ten being the most allergic, she’s around a six on all of them. You need to eliminate these foods from her diet immediately. Do you have any questions?
Did I have any questions? Um, yeah—like, a million. Starting with, “What the heck is my daughter supposed to eat? Are you totally sure she’s truly allergic to this stuff and not just intolerant? How accurate are these tests? What about gluten—can we put her back on gluten?” I asked the nurse these questions as they were rapidly firing into my brain, but she ultimately confessed they were “above her pay grade” (her exact phrase, mind you), and I hung up the phone feeling frustrated and upset that the doctor hadn’t called me herself. Instead, I had to wait for our follow-up appointment two weeks later to get the answers I so desperately needed.
During that time, I dramatically reduced the amount of dairy, egg, and banana from my daughter’s diet, but I didn’t eliminate it completely. I was convinced for some silly reason that the doctor would tell me we didn’t have to completely cut these foods out of my daughter’s diet but rather just avoid them as much as possible. After all, I reasoned, my daughter had never broken out into any kind of rash or breathing problems after eating these foods. Isn’t that what food allergies are all about: you eat a food and your body reacts violently and visibly right then and there?
“No,” the doctor explained at our next appointment. “Food allergies can manifest themselves in a number of different ways, one of them being a ‘gut allergy,'” which is what my daughter has. “She will never need a EpiPen, but even though she will not outwardly display signs of her allergy, she must avoid these allergens completely at all times. You basically need to get her on a paleo diet,” she explained. “Lots of meat, berries, and nuts.”
I looked at this woman in disbelief. She might as well have told me to go out and forage for tree bark and grub worms to feed my child.
“But how is this going to work?” I asked her.
“You’ll figure it out,” she told me. “There are lots of resources online, or you can call this nutritionist and set up an appointment.” She handed me a card with a name and number printed on it.
I felt so shocked. Where was my conciliatory hug? My “I’m so sorry—I know it’s hard, but you can do this!”? My world had basically been turned upside down, and this doctor didn’t seem to notice, much less care. Such is the world of medicine, I reasoned. I thought about the patients on stretchers and feeding tubes I had seen in the waiting room and reminded myself that as hard as this diagnosis was to me at the time, it could’ve been so much more devastating. And while perspective like that is necessary and healthy, I am also a strong believer in feeling your way through the hard times.
So I wallowed in self pity for a while. I am, by voluntary admission, a lazy parent when it comes to food preparation for my children. I do not fix Pinterest-worthy Bento Box lunches. I do not seek out ways to sneak cleverly disguised vegetables into my children’s pizza sauce. Who am I kidding? I do not even make my own pizza—I buy it frozen in a box and heat it up in my oven. I mourned the loss of all my convenience foods. I had felt pretty proud of myself for navigating my way through the world of gluten-free eating, but to add dairy and egg to the list of banned substances seemed absolutely inconceivable.
I also wallowed in pity for my daughter. I hated that she would have to turn down all the “normal” foods that kids her age eat. No more mac ‘n’ cheese. No more quesadillas. No more pizza. No more cakes, cookies, or ice cream. The list was endless. The doctor had recommended meat, nuts, and berries. It was a culinary death sentence for a five-year-old, as far as I was concerned. My heart ached for her and all the disappointment and isolation I knew she would feel at class parties, birthday parties, and social gatherings of any kind.
And I strongly believe that all of those feelings are valid even though I also strongly believe that in the grand scheme of things, we really don’t have it all that bad. After some trial-and-error tastings, we have identified a fairly robust lineup of foods my daughter is excited to eat. She has surprised me with her enthusiasm to try new things and surprised me even more with the new things that appeal to her little taste buds. Going out to eat at a restaurant is admittedly hard, but we have a few standbys that seem to be available at most every place we go.
I have also been surprised to find dairy lurking in some very unlikely suspects—like her probiotic, for instance. The very pill that we had been giving her for years to alleviate her pain was possibly adding to it. We switched brands immediately after one day miraculously noticing the disclaimer on the box that it “may contain milk protein.” Dairy was also hiding in her Fiber and Protein branded fruit and veggie pouches, one of the few “healthy” foods I thought I could count on for convenient on-the-go snacking. Imagine my surprise one day when I actually bothered to read the label and realized that pea protein wasn’t fueling these pouches as I had foolishly assumed but rather whey protein. Whey protein in a “fruit and veggie” pouch?! WHY???
What I learned from these rookie mistakes was to assume nothing. I am now most certainly “that mom” who spends an inordinate amount of time reading labels in the aisles of the grocery store. I usually have my phone in hand, not so I can respond to a group text but so I can Google any unfamiliar ingredients to make sure we aren’t dealing with an allergen in disguise. As a food allergy mom, I feel like I am constantly going into battle with the world and that the world is often out to get my daughter. It’s my job to protect her, and I take it pretty seriously.
And on that note, I’ll leave you with my parting thoughts on this subject. I regret a great many things in my life but none as much as that I did not do a better job of protecting my daughter early on in our journey by fighting harder to get better answers to what was upsetting her stomach so much. My daughter battled food allergies for FIVE years, and I let doctor after doctor convince me that there was nothing seriously wrong with her. I had heard it before; you have heard it before. But I’ll say it again: trust your gut. If you aren’t getting the answers you need from a doctor, seek a second opinion. Or a third or a fourth. Whatever it takes. Keep fighting for your kids. They’re depending on you.