I am ground zero for questions about fake food allergies and gluten intolerances. I have Celiac Disease. My kids are undiagnosed but on gluten-free, low sugar diets, and they go to nut-free schools. I recently started a company, which makes healthy energy bars that are free of the top eight allergens and gluten, called ZEGO, and frequently do product demos at stores. What I’m typically asked is, “When people who aren’t Celiac claim they need to be gluten free, doesn’t that hurt real Celiacs?” Another is, “Aren’t a lot of these fake allergies? I mean, really, not all these people can have food allergies.”
Spoiler alert: the answers are NO and NO, but I understand where they are coming from. Food allergies and intolerances are relatively new to the general public, and they are SO common now that they may be hard to believe. But believe me that these restrictive diets are so hard to follow, no one would do it voluntarily for long unless they experienced huge health benefits.
Food allergies grew 50% from 1997 to 2011 according the Center for Disease Control, that’s an epidemic proportion, and Celiac Disease diagnoses have grown exponentially during that time as well. But for people born before 1997, there probably weren’t many kids they grew up with who had severe food allergies or gluten intolerances (in 1981, my Tennessee doctors told me only one other person in the entire state had Celiac Disease). Based on their experience, this sudden, dramatic increase in “Bobby can’t have peanuts” and “no bun, please” may seem like a dietary trend of choice, or an overreaction to a condition.
Another source of confusion is that sensitivities vary–some people can have a deadly allergic reaction to 1/500th of a peanut while others can eat up to 4 or 5 whole peanuts and be fine. Gluten sensitivities can vary similarly. But with gluten, the reactions are usually ones people want to keep more private, like digestive trouble or depression. So when one mom seems laid back about her child’s food restrictions and another seems freaked out, it probably has more to do with the child’s sensitivity rather than the mother’s personality. But to many people, it looks like one is over reacting or exaggerating, while the other is giving their child healthy space to make their own decisions and still enjoy being a kid.
As a Celiac mom of 3 kids who have food sensitivities and intolerances, I don’t have the deadly allergies to worry about, but I really feel for people dealing with suggestions that they are faking their allergies and intolerances, or the severity of them. I have dozens of examples of people telling me that I was being too restrictive on my kids’ diets or that I was making up symptoms for myself, or my children. Sometimes this came from doctors, sometimes from well-meaning people who love me. The memories go back far, and, honestly, they bring tears to my eyes even still.
The first time was when I was a scrawny 12 year-old. I swung my skinny legs from the exam table and cried quietly as an orthopedist told me I was making up my bone pain to get attention. He had no diagnosis for me, so he decided I must have been making it up. That year, I broke 5 bones in a series of very minor falls. My history of broken and painful bones ended at age 15, when I was diagnosed with Celiac Disease and went on a gluten-free diet. I didn’t know my symptoms had a dietary link. I had no intuition about what was happening to me at all, but I did know it was real.
But it felt surreal on a sunny fall day 5 years ago when a well-meaning doctor told me in front of my 10 year-old son that it wasn’t fair for me to have him on a gluten-free and sugar-free diet, even though he would get acute stomach pains and headaches if he ate as little as a spoonful of ice cream, and suffered from chronic digestive upset when gluten was in his diet.
The problem was, he didn’t test positive for Celiac or Diabetes—no diagnosis, no public validation for my dietary choices for my son. This opened the door for skeptics—doctors, other parents, and friends. We were lucky in a way, his reaction to sugar and gluten were so severe it was a clear to me that we should ignore the doctor and go with my parental instincts and observations. My youngest daughter’s symptoms, however, have been a bit more illusive.
My youngest daughter was experiencing hyperactivity and distractibility, problems sleeping, elevated anxiety, and chronic stomachaches. Many folks suggested ADHD drugs, including some parents and some teachers at her school, but my intuition was that at least some of our answer was in diet. And, maybe a dietary approach would be enough to enable her to manage without the meds. The results have been impressive, though not the slam-dunk that we saw with my son.
When we took gluten out of her meals, the stomachaches went away. Then we took sugar and chocolate out of her diet, and she had less anxiety, slept better and was less hyperactive. And, though I’d like to see even more improvement for her, she is so much better than before that we aren’t even thinking about introducing ADHD meds. I didn’t need a doctor’s diagnosis to validate that she shouldn’t eat these foods. I needed some time for dietary trial and error and to trust my observations and intuition.
Almost everyone is more aware of food allergies and intolerances these days, but still there is a lot of skepticism that many people are selectively diagnosing their own issues and imposing that on other people (this is particularly the case with gluten).
For me, what it comes down to is this. If someone or their child functions or feels better by not eating certain foods, let them follow that diet without casting suspicion on their choice. They are clearly trying to get better or avoid getting sick, and may not have the time, energy, or desire to share their story with you as to why.
If it’s you or your child with food issues, be unapologetic for following diet that maximizes your health and well-being, but recognize that your diet is your responsibility. People and businesses can be very helpful but you can’t expect that always to be the case.
Figure out ways to make it easier for others to welcome you to the table, so to speak. I usually eat before going to a party instead of expecting the host to have special food for me. If it’s a sit-down dinner, I will offer to bring a gluten-free dish. I try to remember to call the restaurant before booking a reservation to ask if they can accommodate our family’s restrictions. I have treats in the freezer for my kids to bring to birthday parties, and when they were younger, if their issue was severe enough, I stayed at the party to keep an eye their eating.
It’s a challenge to be healthy. It’s a challenge to raise healthy kids. Let’s support each other in meeting these challenges and not engage in debates over whether other people are faking their dietary needs.
Colleen Kavanagh is the CEO of ZEGO www.zegosnacks-staging.iuwvijf3-liquidwebsites.com, a nutrition focused company making allergy friendly snacks. She also is the executive director of A Better Course www.abettercourse.org, whose mission is to improve nutrition for low income kids at school and home.