Sitting at the hotel bar during a recent food allergy conference I was surprised–no, shocked– when two mothers of food-allergic children told me that adults shouldn’t need help coping with their allergies. They were wondering why I was at the conference. Now before you get angry, let me explain their side. They assumed all adults with food allergies had developed them as children. Hence, by adulthood, food-allergic folks should be experienced–physically and emotionally–at handling restrictions and reactions.
Imagine! I had no idea some people thought this way! Of course, I quickly took this opportunity to tell them how wrong they were.
I explained people can develop food allergies and celiac disease and other health issues requiring food restrictions at any time in life. I shared that my symptoms started in my late thirties, though it took nearly ten years to find out multiple food allergies, celiac disease, and eosinophilic esophagitis were the cause.
My kids ate everything–and I mean everything!–when they were little. Their food issues developed as teens. My oldest son realized dairy and eggs were off-limits in high school, and my youngest started showing signs of celiac disease his first year in college. I also mentioned one of my adult friends couldn’t eat dairy and gluten due to Crohn’s Disease and another developed life-threatening reactions to many foods in her thirties. Oh, and by the way, one of my favorite attendees at the conference was a spunky senior citizen with over 40 recently diagnosed food allergies and intolerances.
After we were all on our second glass of wine, I may have suggested that getting diagnosed with food allergies as an adult may actually be more difficult than being diagnosed as a child. What I was trying to say is the food-allergic adults needed the conference as much as the parents of food-allergic kids did. Figuring out all the foods containing soy, dairy, gluten and corn fell on my shoulders–I didn’t have mom and dad to guide me. My young adult sons taught themselves how to negotiate school cafeterias and participate in social activities with peers who didn’t get that food could make them horribly sick. My oldest even figured out how to eat dairy- and egg-free in Italy, the land of pizza and cheese. After years of not needing to worry about allergy-friendly menus, or planes with peanuts, or explaining to family members why they couldn’t double-dip, becoming “the weird person who can’t eat anything” is like being a foreigner in a new land–yet the doctors don’t offer any counseling.
I think the women were kind of tired of me by then. They wanted to get back to talking about preschools and camps. But this conversation opened my eyes to how some people may view adults with food allergies. Will a waiter or chef who thinks I’ve managed celiac disease all my life have a false sense of security that I know what I’m doing when ordering my food? Will my co-workers and friends not believe me when I become sick from food; after all, shouldn’t I know how to eat by now? My own mother doesn’t understand my health issues because I didn’t have food allergies as a child, so how can I expect strangers to understand?
Fortunately, there are those out there who do get it. The next few blog posts will focus on resources for teens and adults, starting with Erica Brahan’s “A Teenager’s Perspective on Food Restrictions: A Practical Guide to Keep from Going Crazy.” Gotta love the title.
Please be sure to let me know of any resources I miss. And remember, I do know how difficult a later-in-life diagnosis is–I am here to help.
Lately I’ve been feeling like my leaky gut is an alien that’s taken over my body, like in one of those sci-fi movies my boys watched as kids. My leaky gut and all its accompanying symptoms control me physically and emotionally. My gut dictates my family life, my work life, my social life. It tells me where I can eat and what I can eat. It makes me tired and angry. It keeps me from traveling and doing the things I used to do. It makes my brain feel like mush and the wrong words come out of my mouth.
I wish I had an antidote to cure my leaky gut, so that I could return to the person I once was, the one who felt Super Human. Of course, back then, I didn’t know I felt Super Human. I did not appreciate my health, my energy, my memory, and my non-eczema skin because I didn’t know any different.
If I could go back in time, oh how I’d live my life differently. I wouldn’t starve myself in high school because I wanted to fit in 28-waist Levis. I wouldn’t have lived on lettuce and beer in college. As a young mom, I’d skip the processed convenient foods and focus more on the outer aisles of the grocery stores. I’d follow the advice of my sister-in-law, an osteopathic doctor, who touted organic and non-GMO foods way before it was cool.
In my thirties, I’d take probiotics when I took antibiotics along with prescribed painkillers for the first medical procedure . . . and the second . . . and the third. I wouldn’t have believed the first two doctors who diagnosed IBS; instead, I would have listened to that voice in my head that said something else was wrong. Nor would I have believed the next two doctors who diagnosed gall bladder disease and not celiac disease and food allergies. Yes, the cheese sticks made me sick but not because they were fatty! Because they were full of wheat and dairy!
When my father died, I would have taken long walks in the Vermont woods instead of drowning my sorrow in wine and Ben and Jerry’s. I would have believed that stress does impact your health.
But I can’t go back.
None of us can.
We can only go forward.
We can do all the things we should have been doing all along. We can continue educating ourselves about our leak guts and accompanying illnesses. We can stand up for ourselves at our doctors’ offices. We can listen to the voices in our heads when they tell us something isn’t quite right, or maybe I need another doctor’s opinion or test, or maybe the diet I’m following isn’t working.
Most importantly, we can support one another.
When you’re having a bad day, reach out to someone who understands; there are dozens of online support sources. Check out the websites, bloggers and nonprofit organizations who dedicate themselves to educating and supporting various autoimmune illnesses.
And when you’re feeling good–maybe not quite Super Human, but good nonetheless–help someone who is having a bad day.
It’ll make you feel even better.
After writing this post, I realized you could replace “Leaky Gut” with “Celiac Disease” or “Food Allergies” or “Multiple Chemical Sensitivities” or “Lupus” or “Lyme Disease” or an other autoimmune illness and the meaning of my words would be the same. Coincidentally, it happens to be “awareness week or month” for just about every autoimmune disease. So if you want to substitute “leaky gut” for the illness you have and share this post (with a link back to me), please feel free to do so.